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Virtual Issues
Read our Virtual Issues on the following topics:
- Ethics and philosophy of neurodevelopmental conditions
- Richard Robinson: Lifelong Contributor to DMCN
- Epigenetic mechanisms in human growth, development, and disease
- Developmental changes in paediatric neurodisability: from concepts to diagnostics and therapy
- Mac Keith Press: 50th Anniversary
- Paediatric Stroke (2020 Update)
- Cerebral Palsy Classification Systems
- Childhood Disability Across the World
- New Technologies in Paediatric Neurodisability
- Neonatal Neurology
- Orthopaedic Management of Cerebral Palsy
- Transition to Adulthood
- Pain in Cerebral Palsy and Other Developmental Disabilities
- Epilepsy 2018 Update
- Early intervention: the power of parenting and practice in the light of the ICF-CY
- Dyskinetic Cerebral Palsy
- Participation
- Autism (2017 Update)
- Encephalitis
- Recent Advances in Developmental Medicine – Plain Language Summaries
- Interventions in Cerebral Palsy (2016 Update)
- Mitochondrial Disorders
- Cerebral Palsy Grows Up
- Rett syndrome – in celebration of the work of Bengt Hagberg,
- Activity and Exercise Therapies
- Autism Spectrum Disorders
- Paediatric Stroke
- Orthopaedic Interventions in Cerebral Palsy
- Selective Dorsal Rhizotomy
- Hippotherapy and Therapeutic Horse Riding
- Epilepsy
- Autism
- Evaluating Interventions in Cerebral Palsy
- Editor's Choice

Developmental changes in paediatric neurodisability: from concepts to diagnostics and therapy
Mac Keith Press: 50th Anniversary
[Taken from Baxter P. Mac Keith Press: 50th Anniversary. Dev Med Child Neurol 2008; 50: 4.]
We have commissioned a short series of reflective articles to appear in each issue where authors will select a specific paper which has had a major effect on them or their practice. Most of these papers are classics with high numbers of citations but it was not intended to exclusively pick out this group of articles. There is not enough space left here to do justice to the article that had most influence on me, a review by Dr Keith Brown on migraine and migraine equivalents in children, published in 1977. While it is in the top 5% of our cited articles, the impact on me was different in that, as a medical student becoming interested in paediatrics and neurology, and seeing children with paroxysmal events, I found it practically helpful, full of insight, interestingly written, and enjoyable to read. The result was to help develop an interest in paediatric neurology and in particular to make me want to work in Dr Brown’s department, an ambition that I was grateful to achieve some years later. The authors of the other anniversary articles will have their own reasons for selecting them, and many could be equally personal.
In the meantime, Mac Keith Press has had the good fortune to be associated with many notable figures in our field who have made major contributions to the care of children with neurological disabilities. Medical progress seems to be accelerating, bringing real hope and more effective treatments to many children with conditions hitherto thought incurable. The Press will continue to thrive in such an exciting clinical and scientific atmosphere. Here’s to the next 50 years.
Peter Baxter, Former Editor in Chief
1. Migraine and Migraine Equivalents in Children
J. K. Brown
October 1977
2. Development of the gross motor function classification system (1997)
Christopher Morris
January 2008
3. Development and reliability of a system to classify gross motor function in children with cerebral palsy
Robert Palisano, Peter Rosenbaum, Stephen Walter, Dianne Russell, Ellen Wood, Barbara Galuppi
April 1997
4. An appreciation of Ronnie Mac Keith (1978)
Martin Bax
February 2008
5. Varus and valgus deformities of the foot in cerebral palsy (1982)
Mark Paterson
March 2008
6. Varus and valgus deformities of the foot in cerebral palsy
George C. Bennet, Mercer Rang, Derek Jones
October 1982
7. The first meta‐analysis of randomized controlled surgical trials in cerebral palsy (2002)
Robert W Armstrong
April 2008
8. Selective dorsal rhizotomy: meta‐analysis of three randomized controlled trials
John McLaughlin, Kristie Bjornson, Nancy Temkin, Paul Steinbok, Virginia Wright, Ann Reiner, Theodore Roberts, James Drake, Maureen O'Donnell, Peter Rosenbaum, Jason Barber, Anne Ferrel
January 2002
9. Behaviour after cerebral lesions in children and adults (1962)
Dorothy Bishop
May 2008
10. Behaviour after Cerebral Lesions in Children and Adults
Hans‐Lukas Teuber, Rita G. Rudel
February 1962
11. Position as a cause of deformity in children with cerebral palsy (1976)
David Scrutton
June 2008
12. Position as a cause of deformity in children with cerebral palsy
G. E. Fulford, J. K. Brown
June 1976
13. The tyranny of the idea of cure (1967)
Richard Robinson
July 2008
14. The tyranny of the idea of cure
Ronald Mac Keith
June 1967
15. Or is a children’s physician just naturally nice? (1975)
Richard Robinson
July 2008
16. Or is a children’s physician just naturally nice?
Ronald Mac Keith
December 1975
17. ‘Puppet’ children. A report on three cases (1965)
Hilary Hart
August 2008
18. ‘Puppet’ Children A Report on Three Cases
Harry Angelman
December 1965
19. Effects of powered mobility on self‐initiated behaviours of very young children with locomotor disability (1986)
Peter Rosenbaum
September 2008
20. 20. Effects of powered mobility on self‐initiated behaviours of very young children with locomotor disability
Charlene Butler
June 1986
21. Age of onset and outcome in Landau‐Kleffner syndrome (1985)
Anne O'Hare
October 2008
22. Age of onset and outcome in ‘acquired aphasia with convulsive disorder’ (Landau‐Kleffner syndrome)
D. V. M. Bishop
December 1985
23. Visual function in infants with brain lesions (1994)
Eugenio Mercuri
November 2008
24. Patterns of Visual Impairment Associated with Lesions of the Preterm Infant Brain
M. G. Pike, G. Holmstrom, L. S. de Vries, J. M. Pennock, K. J. Drew, P. M. Sonksen, L. M. S. Dubowitz
October 1994
25. Cerebral palsy and newborn care: I, II, and III (1981)
Fiona Stanley
December 2008
26. Cerebral palsy and newborn care. I: secular trends in cerebral palsy
John L. Kiely, Nigel Paneth, Zena Stein, Mervyn Susser
October 1981
27. Cerebral palsy and newborn care. II: mortality and neurological impairment in low‐birthweight infants
John L. Kiely, Nigel Paneth, Zena Stein, Mervyn Susser
December 1981
28. Cerebral palsy and newborn care. III: estimated prevalence rates of cerebral palsy under differing rates of mortality and impairment of low‐birthweight infants
Nigel Paneth, John L. Kiely, Zena Stein, Mervyn Susser
April 1981
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Historically, stroke has been considered rare in children, partly for semantic reasons. The term ‘stroke’ encompasses any brain injury with a vascular aetiology, and thus includes many paediatric entities (e.g. prenatal middle cerebral artery infarction leading to hemiplegic cerebral palsy). Stroke, if not more precisely defined, (e.g. arterial ischaemic, perinatal venous infarction, etc.), obscures the fact that vascular brain injury in childhood is a symptom of both congenital and acquired, non-atheromatous, disorders – illustrated by the association with HIV and the molecular signatures described in this Virtual Issue.
In contrast to adults, the plasticity of the immature brain is thought to facilitate recovery. In fact, as apparent in some of the papers here, there are long-term effects across many functional domains, with personal, familial, social, and health costs. I would advocate moving away from the concept that children recover after stroke to that children recover differently from adults. Thus models of rehabilitation need to think outside traditional adult stroke paradigms.
Hyperacute therapies (thrombolysis/thrombectomy) have shown promise in the treatment of stroke. These interventions remain unproven in children, in whom the disease substrate is significantly different. Royal College of Paediatrics and Child Health guidelines (https://www.rcpch.ac.uk/resources/stroke-childhood-clinical-guideline-diagnosis-management-rehabilitation) provide consensus-based advice for applying such interventions; unfortunately safety and efficacy data is lacking. The barriers to hyperacute intervention (namely, recognition, urgent access to imaging and expert care, and contraindications) are much more prevalent in children, in whom the differential diagnosis of focal neurological syndromes is wide. The need to evaluate the effects of high-risk interventions beyond just survival is well illustrated by the paper included here on long-term outcomes of vein of Galen malformation, a previously lethal disorder.
Many simple measures that could immediately improve quality of care (recognition, access to urgent imaging, supporting homeostasis) are often ignored in favour of trying to deliver high-risk, unproven interventions. Whilst collaboration is key to making progress in terms of gathering evidence, better understanding of the substrate underlying paediatric stroke and a clinical approach targeted to a specific stroke syndrome would bring care of paediatric stroke into the 21st century.
Vijeya Ganesan, Associate Editor
1. Parental and professional opinion regarding outcome after neonatal stroke
Lucie Salah, Stéphane Chabrier, Guillaume Thébault, Manoëlle Kossorotoff
Letter to the Editor, July 2020 - 2. Endovascular treatment of intracranial vascular malformations in children
- Boris Lubicz, Florence Christiaens
- Invited Review, June 2020
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3. Stroke transcranial Doppler in children with human immunodeficiency virus
Nomazulu Dlamini, Keith Pohl, Brian Eley, Ronald Van Toorn, Tracy Kilborn, Soundrie Padayachee, Ann‐Marie Pontigon, Fenella J Kirkham, Jo Wilmshurst
Original Article, January 2020 - 4. A neglected population in the study of children with HIV infection and stroke
- Laura A Benjamin
- Commentary on Dlamini et al., January 2020
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5. Endovascular clot retrieval for acute ischaemic stroke due to basilar artery occlusion in childhood
Emma Macdonald‐Laurs, Jason Wenderoth, Michael Cardamone, Hugo Sampaio, P Ian Andrews
Case Series, January 2020 - 6. Endovascular clot retrieval for acute ischaemic posterior circulation stroke in children: a new effective therapy?
- Adam Rennie
- Commentary on Macdonald-Laurs et al., February 2020
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7. Long-term outcome of vein of Galen malformation
Hélène Taffin, Hélène Maurey, Augustin Ozanne, Philippe Durand, Béatrice Husson, Jean-François Knebel, Catherine Adamsbauk, Kumaran Deiva, Guillaume Saliou
Original Article, November 2019 - 8. Vein of Galen malformation: beyond life or death
- Vijeya Ganesan
- Commentary on Taffin et al., December 2019
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9. Risk factors for perinatal arterial ischaemic stroke: a large case–control study
Anna-Lisa Sorg, Rüdiger von Kries, Mathias Klemme, Lucia Gerstl, Raphael Weinberger, Andreas Beyerlein, Nicholas Lack, Ursula Felderhoff‐Müser, Mark Dzietko
Original Article, September 2019 - 10. Perinatal inflammation and placental programming of neonatal stroke
- Stéphane Chabrier, Guillaume Sébire
- Commentary on Sorg et al., October 2019
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11. Fatigue in children with perinatal stroke: clinical and neurophysiological associations
James G Wrightson, Ephrem Zewdie, Hsing‐Ching Kuo, Guillaume Y Millet, Adam Kirton
Original Article, June 2019 - 12. Factors associated with fatigue in children with perinatal stroke
- Jan Stubberud
- Commentary on Wrightson et al., July 2019
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13. Mirror movements in children with unilateral cerebral palsy due to perinatal stroke: clinical correlates of plasticity reorganization
Madison Riddell, Hsing‐Ching Kuo, Ephrem Zewdie, Adam Kirton
Original Article, January 2019 - 14. Importance of assessing the intermanual asymmetry of mirror movements in paediatric hemiparesis
- Jessica Tallet
- Commentary on Riddell et al., February 2019
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It is a privilege to have the opportunity to introduce this virtual issue on functional classification systems in childhood disability. The more than three dozen papers listed here attest to the international interest in this topic and the creative research and implementation efforts that they have spurred. In fact, however, these reports represent only the tip of a very large iceberg. The thousands (>5000) of references to these classification systems in the published literature speak to the impact that these systems have had on our field.
It is worth highlighting a couple of innovations that this collective work represents. First, this approach to describing functioning across several areas of activity, in terms of what people can do, contrasts with our traditional ‘severity’ ratings that emphasise limitations. Second, many people have created and used home-grown classifications of function to report outcomes or correlations of one dimension of a person’s life with other aspects. What the systems collated in this virtual issue have in common is that they have all been created and validated using principles of measurement science to establish their reliability (whether these systems are used consistently by different observers, including parents) and validity (whether and how well, based on evidence, they ‘do the job’ to discriminate ‘levels’ of functioning in their respective areas of activity, or, in the case of the GMFCS, their ability to predict later gross motor functioning from an early age). Thus, these classification systems are, indeed, ‘systems’ and will hopefully serve as models for continuing 21st century efforts both to create tools useful to clinicians and families, and to promote appropriate application and uptake in practice and research.
Prof. Peter Rosenbaum, North American Editor
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1. Development and reliability of a system to classify gross motor function in children with cerebral palsy
Robert Palisano, Peter Rosenbaum, Stephen Walter, Dianne Russell, Ellen Wood, Barbara Galuppi
September 20082. Development of the Gross Motor Function Classification System for cerebral palsy
Peter L Rosenbaum, Robert J Palisano, Doreen J Bartlett, Barbara E Galuppi, Dianne J Russell
September 20083. Gross Motor Function Classification System: impact and utility
Christopher Morris, Doreen Bartlett
February 20074. Stability of the Gross Motor Function Classification System
Robert J Palisano, David Cameron, Peter L Rosenbaum, Stephen D Walter, Dianne Russell
February 20075. The Gross Motor Function Classification System for Cerebral Palsy: a study of reliability and stability over time
Ellen Wood, Peter Rosenbaum
February 20076. Stability of the Gross Motor Function Classification System in children and adolescents with cerebral palsy: a retrospective cohort registry study
Ann Alriksson‐Schmidt, Eva Nordmark, Tomasz Czuba, Lena Westbom
Original Article, January 20177. The Gross Motor Function Classification System: 20 years on
Anna Mccormick
Commentary, February 20178. The stability of the Gross Motor Function Classification System in adults with cerebral palsy
Anna McCormick, Marie Brien, Joelle Plourde, Ellen Wood, Peter Rosenbaum, Jennifer McLean
March 20079. Content validity of the expanded and revised Gross Motor Function Classification System
Robert J Palisano, Peter Rosenbaum, Doreen Bartlett, Michael H Livingston
September 200810. Reliability of family report for the Gross Motor Function Classification System
Christopher Morris, Barbara E Galuppi, Peter L Rosenbaum
February 200711. Gross Motor Function Classification System used in adults with cerebral palsy: agreement of self‐reported versus professional rating
Reidun Jahnsen, Geir Aamodt, Peter Rosenbaum
February 200712. Caregiver knowledge and preferences for gross motor function information in cerebral palsy
Amy F Bailes, Mary Gannotti, Danielle M Bellows, Michele Shusterman, Jennifer Lyman, Susan D Horn
Original Article, August 201813. The Gross Motor Function Classification System: clinicians need to spread the word
Laura Brunton
Commentary, September 201814. Should the Gross Motor Function Classification System be used for children who do not have cerebral palsy?
Megan Towns, Peter Rosenbaum, Robert Palisano, F Virginia Wright
Review, November 2017 -
1. The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability
Ann‐Christin Eliasson, Lena Krumlinde‐Sundholm, Birgit Rösblad, Eva Beckung, Marianne Arner, Ann‐Marie Öhrvall, Peter Rosenbaum
February 20072. Reliability of the Manual Ability Classification System for children with cerebral palsy
Christopher Morris, Jennifer J Kurinczuk, Raymond Fitzpatrick, Peter L Rosenbaum
February 20073. The stability of the Manual Ability Classification System over time
Ann‐Marie Öhrvall, Lena Krumlinde‐Sundholm, Ann‐Christin Eliasson
Original Article, November 20134. Stability of the Manual Ability Classification System in young children with cerebral palsy
Andrea Burgess, Roslyn Boyd, Jenny Ziviani, Mark D Chatfield, Robert S Ware, Leanne Sakzewski
Original Article, January 20195. Assessing the stability of functional classifications for pediatric disability
Steven Hanna
Commentary, March 20196. Mini‐MACS: development of the Manual Ability Classification System for children younger than 4 years of age with signs of cerebral palsy
Ann‐Christin Eliasson, Anna Ullenhag, Ulla Wahlström, Lena Krumlinde‐Sundholm
Original Article, June 20167. Classifying the manual abilities of young children with cerebral palsy
Deepa Jeevanantham
Commentary, June 20168. Stability of the Gross Motor Function Classification System, Manual Ability Classification System, and Communication Function Classification System
Robert J Palisano, Lisa Avery, Jan Willem Gorter, Barbara Galuppi, Sarah Westcott McCoy
Original Article, May 20189. Stability of three classification systems for cerebral palsy: benefits from multicenter collaboration
Erika G Gisel
Commentary, June 2018
- CFCS
1. Developing and validating the Communication Function Classification System for individuals with cerebral palsy
Mary Jo Cooley Hidecker, Nigel Paneth, Peter L Rosenbaum, Raymond D Kent, Janet Lillie, John B Eulenberg, Ken Chester Jr, Brenda Johnson, Lauren Michalsen, Morgan Evatt, Kara Taylor
Original Article, June 20112. Developing the Communication Function Classification System for individuals with cerebral palsy
Helen Cockerill
Commentary, June 20113. Validity of the Communication Function Classification System for use with preschool children with communication disorders
Mary Jo Cooley Hidecke, Barbara Jane Cunningha, Nancy Thomas‐Stonel, Bruce Oddso, Peter Rosenbaum
Original Article, January 20174. Measuring communication and participation in children with speech and language disorders
Elspeth Mccartney
Commentary, January 2017
- FCCS
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1. Development and reliability of the Functional Communication Classification System for children with cerebral palsy
Elizabeth Barty, Katy Caynes, Leanne M Johnston
Original Article, April 20162. Reflections on the Functional Communication Classification System for children with cerebral palsy
Katherine C Hustad
Commentary, May 20163. The Functional Communication Classification System: extended reliability and concurrent validity for children with cerebral palsy aged 5 to 18 years
Katy Caynes, Tanya A Rose, Deborah Theodoros, Debbie Burmester, Robert S Ware, Leanne M Johnston
Original Article, January 20194. The Functional Communication Classification System for children with cerebral palsy: the potential of a new measure
Elspeth McCartney
Commentary, January 2019
- EDACS
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1. Development and reliability of a system to classify the eating and drinking ability of people with cerebral palsy
Diane Sellers, Anne Mandy, Lindsay Pennington, Matthew Hankins, Christopher Morris
Original Article, December 20132. Classifying eating and drinking ability in people with cerebral palsy
Sophie Scott
Commentary, February 20143. The Eating and Drinking Ability Classification System in a population‐based sample of preschool children with cerebral palsy
Katherine A Benfer, Kelly A Weir, Kristie L Bell, Robert S Ware, Peter S W Davies, Roslyn N Boyd
Original Article, March 20174. Distribution of children in class I through V in functional classification systems
Erika G Gisel
Commentary, April 20175. The Eating and Drinking Ability Classification System: concurrent validity and reliability in children with cerebral palsy
Lea Tschirren, Susanne Bauer, Chiara Hanser, Petra Marsico, Diane Sellers, Hubertus J A van Hedel
Original Article, April 20186. Measurement tools in a globalized world: is translation or redevelopment the best approach?
Erika G Gisel
Commentary, April 2018
- VFCS
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1. Visual Function Classification System for children with cerebral palsy: development and validation
Giovanni Baranello, Sabrina Signorini, Francesca Tinelli, Andrea Guzzetta, Emanuela Pagliano, Andrea Rossi, Maria Foscan, Irene Tramacere, Domenico M M Romeo, Daniela Ricci
Original Article, June 20192. Visual Function Classification System for children with cerebral palsy: development of a new tool
Peter Rosenbaum
Commentary, June 2019 -
Childhood Disability Across the WorldThis Virtual Issue on ‘Childhood Disability Across the World’ has been assembled in relation to the 2nd Triennial Conference of the International Alliance of Academies of Childhood Disability (IAACD). The IAACD was founded in 2014 in response to the challenging conditions of the estimated 100 million children with developmental disabilities around the world, 80% of which live in low- and middle-income countries (LMICs). Many of these children are neglected or stigmatized, live in poverty, and are not attending school. In addition, they have no or limited access to rehabilitation services and technical assistive devices, and where such services do exist, they are often not evidence-based. The mission of the IAACD is to enhance local multidisciplinary professional capacity and expertise through a global network of academies, with an ultimate goal to improve the health and well-being of children with developmental disabilities – everywhere.
The United Nations’ global agenda has shifted during the last years from ‘surviving’ to ‘thriving’ as illustrated in the Sustainable Developmental Goals (2015–2030) ‘ensuring healthy lives and promoting well-being’ and ‘leaving no one behind’. Developmental Medicine & Child Neurology’s aspiration to foster development and research efforts through this special feature is therefore very timely. The collection focuses on children with disabilities in LMICs, but also includes other groups of vulnerable children such as unaccompanied refugee and migrant children, as well as children with disabilities in Europe suffering from the impact of austerity.
Papers report on the current situation in East Africa, Latin America, Mexico, China, and Asia/Oceania; some of these from members of newly established academies joining the IAACD. Interestingly, and illustrative of the current situation in most countries, only a few are research articles; with two on children with cerebral palsy (CP) from Bangladesh and Ghana. Both depict strikingly different conditions compared with high-income countries (HICs), emphasizing the inaccuracy of extrapolating from studies in HICs and the urgent need to perform research in LMICs. An included systematic review on quality of life in children with CP identified only eight studies from LMICs.
Considering that over 80% of children live in LMICs, there is an unjust imbalance in the distribution of research in childhood disability across countries. This imbalance was exemplified by a recently published World Health Organization report on epilepsy (https://www.who.int/mental_health/neurology/epilepsy/report_2019/en), in which the vast majority of articles were from North America, Europe, or Oceania. Obviously, this distribution is not based on populations and needs, but reflects the lack of resources and infrastructure in most LMICs, including professional expertise, research training, access to information, and funding. Building infrastructure and resources to facilitate research on children with disability is one of the IAACD’s missions, and it is time to develop a strategy to support research in LMICs member academies. One example could be to establish international summer schools for PhD students in LMICs similar to the one held by European Academy of Childhood Disability for the first time this summer. This Virtual Issue, featuring reports from LMICs, is also an encouraging step towards greater visibility and action.
Hans Forssberg
International Alliance of Academies of Childhood Disability, President1. Treatment and re/habilitation of children with cerebral palsy in India: a scoping review
Pranay Jindal, Joy C Macdermid, Peter Rosenbaum, Briano Direzze, Amitesh Narayan, Sharada L Nayak
Review, September 20192. Identifying neurodisability research priorities in resource poor regions
Arnab Seal
Commentary, September 20193. Neurodevelopmental problems of unaccompanied refugee and migrant children: a new challenge for pediatric neurologists
Elisa Fazzi, Christian Korff, Antoinette Bernabe Gelot, Patricia Leroy, Francois Rivier, Victoria San Antonio-Arce, Pierangelo Veggiotti
Commentary, September 20194. Challenging the boundaries of child neurology in Asia and Oceania
Ching‐Shiang Chi
Editorial, July 20195. Improving outcomes for children with neurodisability in East Africa
Pauline Samia
Editorial, June 20196. Developmental milestones of the Latin American Academy of Child Development and Disabilities
Verónica Schiariti
Editorial, August 20197. Epidemiology of cerebral palsy in Bangladesh: a population‐based surveillance study
Gulam Khandaker, Mohammad Muhit, Tasneem Karim, Hayley Smithers‐Sheedy, Iona Novak, Cheryl Jones, Nadia Badawi
Original Article, May 20198. Important report on cerebral palsy in Bangladesh: but different findings compared with other countries need further exploration
Carin Andrews, Angelina Kakooza‐Mwesige, Ann‐Christin Eliasson, Hans Forssberg
Commentary, May 20199. Comparative use of the Ages and Stages Questionnaires in the USA and Scandinavia: a systematic review
Kevin P Marks, Nina Madsen Sjö, Philip Wilson
Systematic Review, April 201910. Comparative use of the Ages and Stages Questionnaires in low‐ and middle‐income countries
Jason W Small, Hollie Hix‐Small, Emily Vargas‐Baron, Kevin P Marks
Review, April 201911. Austerity and families with disabled children: a European survey
Karen A Horridge, Rosie Dew, Alain Chatelin, Arnab Seal, Lourdes Merio Macias, Giovanni Cioni, Oleh Kachmar, Scott Wilkes, On behalf of the European Academy of Childhood Disability
Original Article, March 201912. Improving the future for families with disabled children
Riccardo Ribera
Commentary, March 201913. Inclusive education for learners with disabilities: the role of the European Union
Fanny Fontaine
Editorial, February 201914. Children with cerebral palsy in Ghana: malnutrition, feeding challenges, and caregiver quality of life
Sarah Polack, Mel Adams, David O'banion, Marjolein Baltussen, Sandra Asante, Marko Kerac, Melissa Gladstone, Maria Zuurmond
Original Article, September 201815. Nutritional status in children with cerebral palsy: figuring out feeding
Elizabeth Molyneux
Commentary, September 201816. 搏 Pediatric neurology in China: challenges and solutions
Yuwu Jiang
Editorial, July 201817. Health‐related quality of life of children and adolescents with cerebral palsy in low‐ and middle‐income countries: a systematic review
Rosalie Power, Catherine King, Mohammad Muhit, Eamin Heanoy, Claire Galea, Cheryl Jones, Nadia Badawi, Gulam Khandaker
Systematic Review, May 201818. Health‐related quality of life in children with cerebral palsy in low‐ and middle‐income countries: opportunities and next steps
Angelina Kakooza‐Mwesige
Commentary, May 201819. Closing the knowledge gap in Mexico: towards evidence‐based medicine in childhood disability
Marta E Valverde‐Diaz, Jorge Carranza‐Del Rio
Editorial, February 2018
New Technologies in Paediatric Neurodisability
This Virtual Issue has been put together to coincide with the British Academy of Childhood Disability (BACD) annual conference which is focussed on ‘The changing face of paediatric neurodisability’. From a personal perspective, it is particularly pleasing to see my own area of research interest reflected in the majority of included papers. These examine the use of active video gaming (AVG), the current preferred term, or virtual reality therapy as it is otherwise known, whilst recognising the ‘dangers of internet gaming disorder’. The common themes across the papers are that AVG, in its various forms, has great potential in delivering physical therapy, whether in a home setting using cheap(ish) commercially available gaming systems such as tablet-based games, the Wii Fit, and Xbox Kinect, or using expensive, often one-off, bespoke systems in therapeutic centres. However, whilst there are a growing number of studies showing positive results, whether in children with cerebral palsy, developmental coordination disorder, Down syndrome, or other motor disorders (or for that matter adults with stroke), numbers in each study have been small. Moreover, systematic reviews have used different outcome measures making comparison of results difficult.
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There remains a need for a large scale, adequately powered, multicentre randomized control trial to confirm these benefits. Once this has been achieved, it would then be possible to focus on more detailed studies comparing different devices, settings (eg home vs school), or how to make AVG more accessible to children with more significant disability. In their commentary, Hung and Gordon conclude:
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‘Selection of virtual reality training protocols should consider individual movement deficits, both unimanual and bimanual tasks, progression of task difficulty such as spatial and temporal constraints, age‐appropriateness, and enjoyment of the session.’
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A meta-analysis and a systematic scoping review consider the role of deep brain stimulation for paediatric dystonia (with encouraging results) and transcranial direct current stimulation in children with autism spectrum disorder (ASD) respectively. In the latter, a few small studies were identified giving ‘tentatively encouraging’ preliminary evidence that this may improve ASD symptoms, including some aspects of language. However, they recognise further research is required.
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For those attending the BACD conference and/or reading this Virtual Issue, I hope you gain greater awareness of the emerging positive or potential changes of new technologies that will hopefully improve the lives of the children and families we work with over the next few years.
Ian Male
British Paediatric Neurology Association
Consultant Community Paediatrician Sussex Community NHS Trust
Honorary Senior Lecturer Brighton and Sussex Medical School1. Artificial intelligence and cerebral palsy
BERNARD DAN
Editorial, September 20182. Use of active video gaming in children with neuromotor dysfunction: a systematic review
ROBBIN HICKMAN | LISA POPESCU | ROBERT MANZANARES | BRENDAN MORRIS | SZU‐PING LEE | JANET S DUFEK
Systematic Review, September 20173. Transcranial direct current stimulation in children with autism spectrum disorder: a systematic scoping review
ANA ALEXANDRA CALDAS OSÓRIO | ANDRE RUSSOWSKY BRUNONI
Invited Review, March 20194. Validation of reaching in a virtual environment in typically developing children and children with mild unilateral cerebral palsy
MAXIME T ROBERT | MINDY F LEVIN
Original Article, April 20185. Virtual reality training for children with unilateral cerebral palsy
YA‐CHING HUNG | ANDREW M GORDON
Commentary, April 20186. Interactive media as a tool for reducing waiting anxiety at paediatric rehabilitation hospitals: a randomized controlled trial
ELAINE BIDDISS | TARA JOY KNIBBE | DARCY FEHLINGS | PATRICIA MCKEEVER | ASHLEY COHEN | AMY MCPHERSON
Original Article, June 20187. Interactive media versus human activities to reduce waiting room anxiety: what is the best option for children with disabilities?
ANDREA MESSERI | BARBARA ATZORI | LAURA VAGNOLI
Commentary, June 20188. Deep brain stimulation for pediatric dystonia: a meta‐analysis with individual participant data
LIOR M ELKAIM | NAIF M ALOTAIBI | ALISSA SIGAL | HAIFA M ALOTAIBI | NIR LIPSMAN | SUNEIL K KALIA | DARCY L FEHLINGS | ANDRES M LOZANO | GEORGE M IBRAHIM | NORTH AMERICAN PEDIATRIC DBS COLLABORATION
Systematic Review, January 20199. Functional electrical stimulation of the ankle dorsiflexors during walking in spastic cerebral palsy: a systematic review
IRENE MOLL | JOHANNES S H VLES | DAN L H M SOUDANT | ADHIAMBO M A WITLOX | HELEEN M STAAL | LUCIANNE A W M SPETH | YVONNE J M JANSSEN‐POTTEN | MARCEL COENEN | SUZANNE M KOUDIJS | R JEROEN VERMEULEN
Systematic Review, December 201710. Internet gaming disorder in children and adolescents: a systematic review
FRANK W PAULUS | SUSANNE OHMANN | ALEXANDER VON GONTARD | CHRISTIAN POPOW
Invited Review, July 201811. Internet gaming disorder: more questions on a new diagnosis
KAI MUELLER
Commentary, July 201812. Disentangling Tourette syndrome heterogeneity through hierarchical ascendant clustering
ELENA CRAVEDI | EMMANUELLE DENIAU | MARIANNA GIANNITELLI | HUGUES PELLERIN | VIRGINIE CZERNECKI | TIPHANIE PRIOU | JEAN XAVIER | ANGÈLE CONSOLI | ANDREAS HARTMANN | DAVID COHEN
Original Article, September 201813. The growing role of machine learning and artificial intelligence in developmental medicine
ROBERT J REYNOLDS | STEVEN M DAY
Commentary, September 2018
In this Virtual Issue on the topic of neonatal neurology, you will find recent publications in Developmental Medicine & Child Neurology. The articles range from observational studies investigating risk factors for brain injury in infants born preterm, to studies that examine different early interventions to improve outcomes. A systematic review examines the physiological responses of newborn infants to music on a neonatal intensive care unit. Another systematic review focusses on evidence for treatment of neonatal cerebral sinovenous thrombosis: a common, but often unrecognized neurological condition in the newborn infant. This collection of articles (and accompanying commentaries) illustrate the breadth of neonatal neurology and the importance for this field of a multidisciplinary and multispecialty approach in both the clinical and research setting. This collection reminds us that neonatal neurology does not end when an infant is discharged home from the neonatal unit, but that a long‐term perspective is important since disorders originating from this early developmental period often have lifelong implications.
Brigitte Vollmer
British Paediatric Neurology Association1. Neonatal neurology: bridging the gap
BRIGITTE VOLLMER
Editorial, January 20192. Neuroanatomical correlates of sensory deficits in children with neonatal arterial ischemic stroke
CATHARINA GIUDICE | ELIZABETH E ROGERS | BRIDGET C JOHNSON | HANNAH C GLASS | KEVIN A SHAPIRO
Original Article, (Early View) December 20183. Early intervention following neonatal stroke: closer towards targeted therapy
LUCY ALDERSON
Commentary on Guidice et al., (Early View) December 20184. Brain structure and neurological and behavioural functioning in infants born preterm
CLAIRE E KELLY | DEANNE K THOMPSON | JEANIE LY CHEONG | JIAN CHEN | JOY E OLSEN | ABBEY L EELES | JENNIFER M WALSH | MARC L SEAL | PETER J ANDERSON | LEX W DOYLE| ALICIA J SPITTLE
Original Article, (Early View) December 20185. Cranial ultrasound and neurophysiological testing to predict neurological outcome in infants born very preterm
HELEN FRANCKX | DANIELE HASAERTS | KOEN HUYSENTRUYT | FILIP COOLS
Original Article, December 20186. Clinical biomarkers for assessing neurodevelopmental outcome of infants born preterm
MAX J KURZ | SANDRA WILLETT
Commentary on Franckx et al., December 20187. Apolipoprotein E gene polymorphisms and intraventricular haemorrhage in infants born preterm: a large prospective multicentre cohort study
MARK DZIETKO | SOEREN SCHULZ | MICHAEL PREUSS | CHRISTOPH HAERTEL | ANJA STEIN | URSULA FELDERHOFF-MUESSER | WOLFGANG GOEPEL
Original Article, (Early View) August 20188. Apolipoprotein E gene polymorphisms: a risk factor for preterm brain injury?
BRIGITTE VOLLMER
Commentary on Dzietko et al., (Early View) October 20189. Neurodevelopmental outcome of nutritional intervention in newborn infants at risk of neuro developmental impairment: the Dolphin neonatal double-blind randomized controlled trial
MORAG J ANDREW | JEREMY R PARR | CHRISTINE MONTAGUE-JOHNSON | KAREN LALER | JANE HOLMES | BONNY BAKER | PETER B SULLIVAN
Original Article, September 201810. The Dolphin trials: nutritional supplementation for neonates and infants at risk
ZULFIQAR A BHUTTA
Commentary on Andrew et al., September 201811. Anticoagulation in the management of neonatal cerebral sinvenous thrombosis: a systematic review and meta-analysis
THOMAS ROSSOR | TOMOKI ARICHI | SANJAY BHATE | ANTHONY R HART | RAHUL RAMAN SINGH
Systematic Review, September 201812. Neonatal cerebral sinvenous thrombosis: the anticoagulation debate
ELIZABETH KOUZMITCHEVA | MAHENDRANATH MOHARIR
Commentary on Rossor et al., September 201813. Infants born preterm, stress, and neurodevelopment in the neonatal intensive care unit: might music have an impact?
DANE E ANDERSON | ANIRUDDH D PATEL
Systematic Review, March 201814. The effect of music therapy on infants born preterm
FRIEDERIKE HASLBECK | THOMAS STEGEMANN
Commentary on Anderson and Patel, March 2018
Orthopaedic Management of Cerebral Palsy
Cerebral palsy (CP) describes a group of permanent disorders of the development of movement and posture. The motor disorders of CP are often accompanied by disturbances of sensation, perception, cognition, communication, behaviour, by epilepsy, and by secondary musculoskeletal problems. Many interventions over the years are directed to improve many of these functions, specifically mobility.
Humans are one of only a few species that preferentially walk in an upright posture. Though societies continue to increase access to those with mobility challenges, the ability to walk efficiently is still a much-desired goal and important function for patients and their caregivers.
The papers in this Virtual Issue evaluate gait improvement management, quantifying changes utilizing the enhanced technical advances of 3-D computerized motion analysis. A few areas of focus are presented. The continued emphasis on the biomechanical aspects of pathological gait and how intervention on both the skeletal alignment (hip and foot) and the motor generators (muscles) impact clinical outcome in both short- and long-term follow-up. Functional effects besides gait by the now accepted management approach of single-event multilevel surgery are presented. Lastly, the need for evidence-based medicine continues to be a challenge as differing treatments are developed. Thoughtful commentary is provided by those in the field and provide readers another viewpoint through critical thinking and analysis.
As in any other disease, an evolution of care and management occurs as knowledge is gained over time. Many of these are system directed, yet more recently actual function and participation in the societal context has taken a larger role. Though I agree with the need to investigate this impact, it seems to have downplayed the importance walking itself as an actual function. Improving that ability alone is a laudable goal. It is not necessarily a means to an end, it is an end unto itself.
Future researchers will face the continuing challenge of defining the desired outcome in this diverse population. Picking the ‘right’ one poses the great challenge of meeting societal and, most importantly, patient expectations in the face of ever-increasing health care costs.
Michael Aiona
American Academy for Cerebral Palsy and Developmental Medicine1. Proximal versus distal femoral derotation osteotomy in bilateral cerebral palsy
MIRJAM NIKLASCH | ELIZABETH R BOYER | TOM NOVACHECK | THOMAS DREHER | MICHAEL SCHWARTZ
Original Article, (Early View) May 20182. The effects of soft tissue procedures for internal hip rotation in cerebral palsy
MAURO CÉSAR DE MORAIS FILHO
Commentary on Niklasch et al., (Early View) June 20183. Mid-term development of hamstring tendon length and velocity after distal femoral extension osteotomy in children with bilateral cerebral palsy: a retrospective cohort study
FIROOZ SALAMI | JULIA WAGNER | STEFAN VAN DRONGELEN | MATTHIAS C M KLOTZ | THOMAS DREHER | SEBASTIAN I WOLF | MIRJAM NIKLASCH
Original Article, August 20184. Gait research in cerebral palsy: should we zoom in or zoom out?
URI GIVON
Commentary on Salami et al., August 20185. Symptomatic hallux valgus and dorsal bunion in adolescents with cerebral palsy: clinical and biomechanical factors
SAMUEL K VAN DE VELDE | MEGAN CASHIN | RATNA JOHARI | RACHEL BLACKSHAW | ABHAY KHOT | H KERR GRAHAM
Original Article, June 20186. Treatment of hallux deformities in adolescents with cerebral palsy
MARYSE BOUCHARD
Commentary on van de Velde, June 20187. Evolution of self-care and functional mobility after single-event multilevel surgery in children and adolescents with spastic diplegic cerebral palsy
GRIET DEQUEKER | ANJA VAN CAMPENHOUT | HILDE FEYS | GUY MOLENAERS
Original Article, May 20188. Functional mobility and self-care outcomes after multilevel orthopaedic surgery in children with cerebral palsy
PAM THOMASON
Commentary on Dequeker et al., May 20189. Selective percutaneous muscle lengthening in cerebral palsy: when there is little or no evidence
HENRY G CHAMBERS
Editorial, April 201810. Long-term development of gait after multilevel surgery in children with cerebral palsy: a multicentre cohort study
THOMAS DREHER | PAM THOMASON | MARTIN ŜVEHLÍK | LEONHARD DÖDERLEIN | SEBASTIAN I WOLF | CORNELIA PUTZ | OLIVER UEHLEIN | KOHLETH CHIA | GERHARDT STEINWENDER | MORGAN SANGEUX | H K GRAHAM
Original Article, January 201811. Results of multilevel surgery in diplegic cerebral palsy at skeletal maturity: new evidence
TIM THEOLOGIS
Commentary on Dreher et al., January 201812. Changes in hip abductor moment 3 or more years after femoral derotation osteotomy among individuals with cerebral palsy
ELIZABETH R BOYER | TOM F NOVACHECK | MICHAEL H SCHWARTZ
Original Article, September 201713. Hip internal rotation in cerebral palsy: does femoral derotation osteotomy influence abductor insufficiency?
BRUNO DOHIN
Commentary on Boyer et al., September 2017
Growing up and becoming an adult is hard for everyone. It can be even harder for children with neurological conditions or developmental disabilities. The health and life trajectories of young people with disabilities may go in many different directions, depending on the interaction of personal and environmental factors, and supports and opportunities to participate in developmental experiences that are part of growing up. These interactions are most important at transition points. For example, transition into or out of high school and leaving the pediatric healthcare setting; all times during which an individual is dealing with significant changes in personal and environmental factors, as well as support systems.
In this Virtual Issue you will find seventeen recent publications in Developmental Medicine and Child Neurology, including eight original articles, seven commentaries, one editorial, and an invited review on the topic of transition to adulthood. The work reflects the paradigm shift in our field: developmental medicine is no longer about children only. Developmental medicine is about the health and well-being of people living with child-onset neurodevelopmental conditions and their families over the life course. Developmental medicine is also about social inclusion, citizenship, community engagement, and other outcomes that are meaningful to these emerging adults with disabilities and their families.
An important takeaway message from this Virtual Issue is that there are more similarities than differences in transition to adulthood across conditions: from focusing on meaningful outcomes (such as employment and participation) to understanding health trajectories (including physical, cognitive, and psychological well-being). Therefore, it makes sense to develop and to evaluate the next generation of interventions in child neurology and developmental medicine, such as environment-focused interventions for young people with a range of developmental disabilities. A life course health development approach encourages future planning, successful transitions, and continuity of care to enable full participation and well-being of individuals with disabilities.
Jan Willem Gorter
McMaster University, CanadaVirtual Issue Articles:
1. Initial evaluation of the effects of an environment-focused problem-solving intervention for transition-age young people with developmental disabilities: Project Team
JESSICA M KRAMER | CHRISTINE HELFRICH | MELISSA LEVIN | I-TING HWANG | ANN CARRELLAS | ARIEL E SCHWARTZ | ALEKSANDRINA GOEVA | ERIC D KOLACZYK
Original Article, (Early View) March 20182. Towards a new generation of participation-based interventions for adolescents with disabilities: the impact of the environment and the need for individual-based designs
DANA ANABY
Commentary on Kramer et al., (Early View) March 20183. Classic infantile Pompe patients approaching adulthood: a cohort study on consequences for the brain
BEREDINE J EBBINK | ESTHER POELMAN | FEMKE K AARSEN | IRIS PLUG | LUC RÉGAL | CARSTEN MUENTJES | NADINE A M E VAN DER BEEK | MAARTEN H LEQUIN | ANS T VAN DER PLOEG | JOHANNA M P DEN HOUT
Original Article, (Early View) March 20184. Novel Pompe disease phenotype: a treatment‐related modified phenotype neglecting the brain
BENEDIKT SCHOSER
Commentary on Ebbink et al., (Early View) March 20185. From paediatrics to geriatrics: ageing with a neurodevelopmental disability
BERNARD DAN
Editorial, March 20186. Neurocognitive outcome in young adults born late‐preterm
KATE HEINONEN | JARI LAHTI | SARA SAMMALLAHTI | DIETER WOLKE | AULIKKI LANO | STURE ANDERSSON | ANU-KATRIINA PESONEN | JOHAN G ERIKSSON | EERO KAJANTIE | KATRI RAIKKONEN
Original Article, March 20187. Precious young adults born late‐preterm: how much follow‐up is enough?
MICHAEL N NELSON
Commentary on Heinonen et al., March 20188. Psychological well‐being and independent living of young adults with childhood‐onset craniopharyngioma
RODICA MIA MEMMESHEIMER | KARIN LANGE | MICHAEL DÖLLE | IRIS MUELLER
Original Article, August 20179. Survivors of childhood brain tumors and their caregivers: transition to adulthood
LAMIA P BARAKAT | WENDY HOBBIE | JANE MINTURN | JANET DEATRICK
Commentary on Memmesheimer et al., August 201710. Course of employment in adults with cerebral palsy over a 14‐year period
JOYCE L BENNER | SANDER R HILBERINK | THESSA VEENIS | WILMA M A VAN DER SLOT | MARIJ E ROEBROECK
Original Article, July 201711. Employment as a measure of participation in adults with cerebral palsy
SUSAN I MICHELSEN
Commentary on Benner et al., July 201712. Quantification of walking‐based physical activity and sedentary time in individuals with Rett syndrome
JENNY DOWNS | HELEN LEONARD | KINGSLEY WONG | NIKKI NEWTON | KYLIE HILL
Original Article, June 201713. A life course approach to increase physical activity in individuals with Rett syndrome
PATRICK G MCPHEE | JAN WILLEM GORTER
Commentary on Downs et al., June 201714. Life course health development of individuals with neurodevelopmental conditions
ROBERT J PALISANO | BRIANO DI REZZE | DEBRA STEWART | PETER L ROSENBAUM | OKSANA HLYVA | MATTHEW FREEMAN | TRAM NGUYEN | JAN WILLEM GORTER
Invited Review, May 201715. Milestone achievement in emerging adulthood in spina bifida: a longitudinal investigation of parental expectations
CHRISTINA E HOLBEIN | KATHY ZEBRACKI | COLLEEN F BECHTL | JACLYN LENNON PAPADAKIS | ELIZABETH FRANKS BRUNO | GRAYSON N HOLMBECK
Original Article, March 201716. Participation trajectories: impact of school transitions on children and adolescents with cerebral palsy
CHRISTINE IMMS | BROOKE ADAIR
Original Article, February 201717. Capturing change: participation trajectories in cerebral palsy during life transitions
MARY A KHETANI
Commentary on Imms and Adair, February 2017
Pain in Cerebral Palsy and Other Developmental Disabilities
Children with cerebral palsy and other developmental disabilities frequently experience pain. However, reported pain prevalence in childhood disability is variable with pain typically under-identified, measured, and treated by clinicians. A rising number of publications have explored the complex nature of pain in childhood disability, highlighting the impact of pain on everyday function and quality of life. Despite these valuable insights, there remains a distinct gap in knowledge of accurate pain assessments and effective treatments, which limits the scope of current pain management strategies.
Pain identification and measurement in childhood disability is challenged by factors including: (1) the inability of many children to self-report their pain due to communication, cognitive, and physical limitations, thus relying on less accurate proxy-reports by carers; (2) the presence of multiple pain sources which complicates the ability to isolate the location of pain; and (3) limitations within existing measurement tools. Many existing measurement tools are not appropriate for children across a broad spectrum of disability from less to more severe disability nor do they quantify pain in sufficient detail across relevant physical, psychological, and social parameters. Until pain is adequately identified and measured in childhood disability, attempts to implement effective pain management and translate strategies into clinical care are likely to be futile.
This virtual issue of Developmental Medicine & Child Neurology showcases papers which cover a range of topics including pain presentation, identification, and measurement, and the impact on health-related quality of life. These studies contribute to a growing body of pain literature in childhood disability which will hopefully lead to advances in evidence-based management.
-Adrienne Harvey | Clare McKinnon
CRE-CP, Murdoch Children’s Research Institute, Melbourne, Australia.Virtual Issue Articles:
1. Long-term impact of childhood selective dorsal rhizotomy on pain, fatigue, and function: a case–control study.
ALECIA K DAUNTER | ANNA L KRATZ | EDWARD A HURVITZ
Original Article, October 20172. Assessments of pain in children and adolescents with cerebral palsy: a retrospective population-based registry study.
LENA WESTBOM | AMAND RIMSTEDT | EVA NORDMARK
Original Article, August 20173. Pain in cerebral palsy: a neglected comorbidity
DARCY FEHLINGS
Commentary on Westbom et al., August 20174. Change in pain status in children with cerebral palsy
RHANDI CHRISTENSEN | ALEXANDER MACINTOSH | LAUREN SWITZER | DARCY FEHLINGS
Original Article, April 20175. Pain hurts 2: over time in children and young people with cerebral palsy
REIDUN JAHNSEN
Commentary on Christensen et al., April 20176. Parent-reported pain in non-verbal children and adolescents with cerebral palsy.
SUBHASHINI JAYANATH | LAI CHOO ONG | MARY JOSEPH MARRET | AISHAH AHMAD FAUZI
Original Article, April 20167. Pain hurts worldwide: non-verbal children and adolescents with cerebral palsy.
KJERSTI RAMSTAD
Commentary on Jayanath et al., April 20168. Investigating the impact of pain, age, Gross Motor Function Classification System, and sex on health-related quality of life in children with cerebral palsy.
BRIAR FINDLAY | LAUREN SWITZER | UNNI NARAYANAN | SHIYI CHEN | DARCY FEHLINGS
Original Article, March 20169. Pain as a root of the problem: health-related quality of life in children with cerebral palsy.
JILDA N VARGUS-ADAMS
Commentary on Findlay et al., March 201610. Pain sensitivity of children with Down syndrome and their siblings: quantitative sensory testing versus parental reports
ABRAHAM J VALKENBURG | DICK TIBBOEL | MONIQUE VAN DIJK
Original Article, November 2015, Editor’s Choice11. Reduced pain threshold documented in children with Down syndrome
CHANTEL C BARNEY
Commentary on Valkenburg et al., November 2015
This Virtual Issue provides a range of reading that includes the genetics of epilepsy, structural malformations, possible pathogenic mechanisms, surgical outcomes, antiepileptic drugs, comorbidities, and developmental outcomes.
Among other issues relating to epilepsy, articles in Developmental Medicine & Child Neurologyin 2017 and 2018 have examined the relationships between epilepsy and childhood stroke (Fox et al.), and between epilepsy and autism (Strasser et al.). There have been reports assessing the effectiveness of clobazam upon cognitive outcomes in the treatment of epilepsies with continuous spike-wave discharges in sleep (Vega et al.); and assessing the effectiveness of hemispherotomy upon language function in children with electrical status epilepticus in sleep and drug-resistant structural hemispheric epilepsies (Gröppel et al.).Epilepsy surgery has gained attention in other DMCN papers this past year. A study from London and Sydney reported 20 years’ experience of corpus callosotomy in 55 patients whose operations were performed before the age of 18 years (Graham et al.), with focus upon treatment effects relating to drop attacks and upon the rates of transient or longer-term surgical complications. An invited review described the role of surgery for epileptogenic cerebral dysplasia in children (Hidalgo and Weiner), suggesting that there has been a change in surgical landscape in which higher proportions of children are now considered appropriate for epilepsy surgery as we improve both our understanding of these conditions, and our investigative and surgical techniques.
Malformations of cortical development are said to be the most common pathology leading to epilepsy surgery in children. One study reported a case series of five young females with mutations in the PCDH19 gene, which are a well-recognized cause of infancy-onset epilepsy (Kurian et al.). Four of the five cases had focal cortical dysplasia, an association that has not been described previously, and which is even more curious because of the range of dysplasias that were found. The associated commentary by Trivisano and Specchio explores this association and the possible pathogenic mechanisms.
DMCN has published several important articles on Dravet syndrome this past year. A study by Lagae et al. facilitated by the Dravet Syndrome European Foundation described an extensive survey of 584 caregivers of patients (mostly children) with Dravet syndrome. The survey suggested that although seizures have a significant impact upon quality of life, the cognitive impairments are influenced more by the type of SCN1A gene mutation and its effects on the neuronal sodium channel (Nav1.1). Another study found that there were significant sleep problems in three-quarters of children with Dravet syndrome, whose parents and guardians had completed a relevant questionnaire (Licheni et al.).
Finally, an editorial by Bernard Dan examined the role that might be played by gap junctions between neurons and glial cells in the pathogenesis of epilepsy. It is thought that gap junctions may play a role in thalamocortical networks and that they can modulate the synchronization of neuronal activity. They are therefore of potential interest in developing novel therapeutic strategies.
- Andrew Lux
Bristol Royal Hospital for Children, UK.Virtual Issue Articles:
1. Prolonged or recurrent acute seizures after pediatric arterial ischemic stroke are associated with increasing epilepsy risk
CHRISTINE K FOX | MICHAEL M DOWLING | PAOLA PERGAMI | LUIGI TITOMANLIO | GABRIELLE DEVEBER | ON BEHALF OF THE SIPS INVESTIGATORS
Original Article, January 20172. Epilepsy as the ‘echo’ of acute stroke in children
MICHAEL J RIVKIN
Commentary on Fox et al., January 20173. Prevalence and risk factors for autism spectrum disorder in epilepsy: a systematic review and meta-analysis
LAUREN STRASSER | MICHELLE DOWNES | JANE KUNG | J HELEN CROSS | MICHELLE DE HAAN
Systematic Review, January 20184. Response to clobazam in continuous spike-wave during sleep
CLEMENTE VEGA | IVAN SÁNCHEZ FERNÁNDEZ | JURRIAAN PETERS | MARIA S THOME-SOUZA | MICHELE JACKSON | MASANORI TAKEOKA | GRETA N WILKENING | PHILLIP L PEARL | KEVIN CHAPMAN | TOBIAS LODDENKEMPER
Original Article, Early View November 20175. Immediate termination of electrical status epilepticus in sleep after hemispherotomy is associated with significant progress in language development
GUDRUN GRÖPPEL | CHRISTIAN DORFER | ANASTASIA DRESSLER | ANGELIKA MÜHLEBNER | BARBARA PORSCHE | JOHANN A HAINFELLNER | THOMAS CZECH | MARTHA FEUCHT
Original Article, January 20176. Interictal epileptiform discharges and cognition
IVÁN SÁNCHEZ FERNÁNDEZ | TOBIAS LODDENKEMPER
Commentary on Gröppel et al., January 20177. Seizure outcome after corpus callosotomy in a large paediatric series
DAVID GRAHAM | DEEPAK GILL | RUSSELL C DALE | MARTIN M TISDALL | CORPUS CALLOSOTOMY OUTCOMES STUDY GROUP
Original Article, Early View October 20178. Long-term effects of corpus callosotomy for therapy-resistant epileptic seizures.
BERTIL RYDENHAG
Commentary on Graham et al., Early View December 20179. Surgery for epileptogenic cerebral dysplasia in children
EVELINE TERESA HIDALGO | HOWARD L WEINER
Invited Review, March 201710. Focal cortical malformations in children with early infantile epilepsy and PCDH19 mutations: case report
MARY KURIAN | CHRISTIAN M KORFF | EMMANUELLE RANZA | ANDREA BERNASCONI | ANJA LÜBBIG | SRISHTI NANGIA | GIAN PAOLO RAMELLI | GABRIELE WOHLRAB | DOUGLAS R NORDLI JR | THOMAS BAST
Case Report, January 201811. Focal cortical dysplasia in genetic epilepsy: new insights from PCDH19-related epilepsy
MARINA TRIVISANO | NICOLA SPECCHIO
Commentary on Kurian et al., January 201812. Quality of life and comorbidities associated with Dravet syndrome severity: a multinational cohort survey
LIEVEN LAGAE | ISABELLA BRAMBILLA | ANA MINGORANCE | EDDIE GIBSON | ALYSIA BATTERSBY
Original Article, January 201813. Is epilepsy the cause of comorbidities in Dravet syndrome?
SVETLANA GATAULLINA | OLIVIER DULAC
Commentary on Lagae et al., January 201814. Sleep problems in Dravet syndrome: a modifiable comorbidity
SHANE H LICHENI | JACINTA M MCMAHON | AMY L SCHNEIDER | MARGOT J DAVEY | INGRID E SCHEFFER
Original Article, Early View November 201715. Sleep, oxygen saturation, and seizures in Dravet syndrome
SAMEER M ZUBERI
Commentary on Licheni et al., Early View December 201716. Gap junctions in epilepsy: for better or worse
BERNARD DAN
Editorial, January 2017
Early intervention: the power of parenting and practice in the light of the ICF-CY
About two in every 1000 newborn infants are later diagnosed with cerebral palsy (CP). CP is caused by a lesion of the brain during early phases of development. Current early diagnostics allow for the detection of a considerable proportion of these infants at an early age. This offers the opportunity for intervention at an age that is characterized by high plasticity of the young nervous system.
Most knowledge on early intervention is based on studies in high risk infants without a lesion of the brain, i.e. without CP. In these infants, early intervention programs promote cognitive development up until and including preschool age; motor development profits less from such programs.1 However, relatively little is known about the effect of early intervention in infants later diagnosed with CP.2,3
In April 2016, a workshop was organized in Groningen, the Netherlands, which dealt with early intervention in infants at high risk of developmental disorders, particularly those at high risk of CP. The meeting was structured on the framework of the WHO International Classification of Functioning, Disability and Health, Children & Youth Version (ICF-CY). This meant that the presentations moved from basic mechanisms on neural plasticity (including possibilities of stem cell therapy) to clinical studies on the effects of early practice and parenting on activity and participation of child and family. This Virtual Issue in Developmental Medicine & Child Neurology is the product of that venture: many of the presenters summarized the state of the art in their research area in a concise review.
In the first paper, Kolb et al. review the remarkable capacity of the young nervous system for plastic changes. The developing brain is sensitive to many influences, e.g. early motor, sensory, and social experiences, as well as early stress. The influences may occur in isolation or in concerted interaction, including counterbalancing interaction. The second paper by Wagenaar et al. summarizes the status of the evolving potential use of mesenchymal stem cells for brain injury in newborn infants with hypoxic-ischaemic encephalopathy. The authors conclude that animal experiments suggest that mesenchymal stem cell therapy is safe and promising as it is associated with improved motor and cognitive outcome. Studies on the effectiveness and safety of this therapy in human infants is ongoing.
The next three papers deal with unilateral lesions of the developing brain as a precursor of unilateral spastic CP. First, Williams et al. discuss the motor system plasticity after a unilateral lesion of the brain on the basis of animal experiments. Their paper highlights the complexity of the activity-dependent interactions between the two corticospinal tracts and the various systems in the spinal cord. Second, Ferre and Gordon review the literature on interventions in children with unilateral spastic CP. They suggest that a ‘one size fits all’ approach presumably should be replaced by tailor-made interventions, in which optimal intervention is determined by the type of lesion and the resulting development of the corticospinal system. Third, Kuo et al. discuss the significance of mirror movements in children with unilateral spastic CP. Two different reorganizational mechanisms may underlie the mirror activity, each putatively having different consequences for intervention. The last paper is the systematic review of Hadders-Algra et al. on the evidence of the effect of early intervention in infants at very high risk of CP on child and family outcome. No firm conclusions could be drawn, but two suggestions emerged: dosing may be critical for effectiveness, and multifaceted intervention may offer the best opportunities for both child and family. The papers in this DMCN Virtual Issue show that our knowledge on brain plasticity is increasingly translated into clues for early intervention. To better understand vulnerability and resilience in brain development, further interdisciplinary translational research is needed, spanning the width from neural receptor molecules to family empowerment.
-Mijna Hadders-Algra, University of Groningen, University Medical Center Groningen – Developmental Neurology, the Netherlands
REFERENCES
REFERENCES
1. Spittle A, Orton J, Anderson PJ, Boyd R, Doyle LW. Early developmental intervention programmes provided post hospital discharge to prevent motor and cognitive impairment in preterm infants. Cochrane Database Syst Rev 2015 Nov 24; (11): CD005495.
2. Morgan C, Novak I, Badawi N. Enriched environments and motor outcomes in cerebral palsy: systematic review and meta-analysis. Pediatrics 2013; 132: e735–46.
3. Morgan C, Darrah J, Gordon AM, et al. Effectiveness of motor interventions in infants with cerebral palsy: a systematic review. Dev Med Child Neurol 2016; 58: 900–9.Virtual Issue Articles:
1. Principles of plasticity in the developing brain
BRYAN KOLB ¦ ALLONNA HARKER ¦ ROBBIN GIBB
Review, December 20171. Principles of plasticity in the developing brain
BRYAN KOLB ¦ ALLONNA HARKER ¦ ROBBIN GIBB
Review, December 20172. Repair of neonatal brain injury: bringing stem cell-based therapy into clinical practice.
NIENKE WAGENAAR ¦ CORA H NIJBOER ¦ FRANK VAN BEL
Review, October 2017, Editor’s Choice3. Motor system plasticity after unilateral injury of the young brain
PRESTON TJA WILLIAMS ¦ YU-QIU JIANG ¦ JOHN H MARTIN
Review, December 20174. Coaction of individual and environmental factors: a review of intensive therapy paradigms for children with unilateral spastic cerebral palsy
CLAUDIO L FERRE ¦ ANDREW M GORDON
Review, November 20175. Neurophysiological mechanisms and functional impact of mirror movements in children with unilateral spastic cerebral palsy
HSING-CHING KUO ¦ KATHLEEN M FRIEL ¦ ANDREW M GORDON
Review, Early View September 20176. Effect of early intervention in infants at very high risk of cerebral palsy: a systematic review
MIJNA HADDERS-ALGRA ¦ ANKE G BOXUM ¦ TJITSKE HIELKEMA ¦ ELISA G HAMER
Systematic Review, March 2017
Improved understanding and more accurate identification of dyskinesia in children with cerebral palsy (CP) in the last 10 years has seen a welcome increase in the number of studies focusing on this population. Dyskinesia is a movement disorder that causes significant functional limitations for children with CP and is challenging for the child and family, as well as health professionals and researchers. Despite dyskinetic CP representing 6% to 15% of all CP cases, many children with spastic CP also have dyskinesia. Consequently, the frequency of dyskinesia seen in children with CP is likely higher than the reported figures for predominant motor type.
There is limited evidence to guide management of this complex group of children. Intervention trials specific to children with dyskinesia in CP are desperately needed. However, before this we need: (1) the ability to accurately identify and classify dyskinesia, and (2) reliable, valid, and responsive tools able to measure dyskinesia in a clinically meaningful way that capture the impact dyskinesia has on the child and family.
This Virtual Issue of Developmental Medicine & Child Neurology includes papers providing further insights and understanding of the clinical patterns and functional profiles of children with dyskinetic CP. Papers also focus on issues around identification, classification, and measurement of dyskinesia in CP. Importantly, the issue highlights the need to improve our recognition, measurement, and management of children with CP who present with both spasticity and dyskinesia, i.e. ‘mixed’ movement disorders.
-Adrienne Harvey; CRE-CP, Murdoch Children’s Research Institute, Melbourne, Australia
Virtual Issue Articles:
1. Identification and measurement of dystonia in cerebral palsy
JAMES RICE | PAWEL SKUZA │ FELICITY BAKER │ REMO RUSSO │ DARCY FEHLINGS
Original Article, Early View August 20172. A systematic review of scales to measure dystonia and choreoathetosis in children with dyskinetic cerebral palsy
KIRSTY STEWART │ ADRIENNE HARVEY │ LEANNE M JOHNSTON
Systematic Review, August 2017, Editor’s Choice3. Functional outcomes in children and young people with dyskinetic cerebral palsy
ELEGAST MONBALIU │ MARY-GRACE DE LA PEÑA │ ELS ORTIBUS │ GUY MOLENAERS │ JAN DEKLERCK │ HILDE FEYS
Original Article, June 2017, Editor’s Choice4. Towards a comprehensive profile of dyskinetic cerebral palsy
ROSER PUEYO
Commentary on Monbaliu et al., June 20175. Rater reliability and scoring duration of the Quality Function Measure in ambulant children with hyperkinetic movement disorders
KYLEE TUSTIN │ HORTENSIA GIMENO │ ERIN MORTON │ JONATHAN MARSDEN
Original Article, August 20166. Evaluation of movement quality: a new tool for children with hyperkinetic movement disorders
ELIZABETH WRIGHT
Commentary on Tustin et al., August 20167. Clinical patterns of dystonia and choreoathetosis in participants with dyskinetic cerebral palsy
ELEGAST MONBALIU │ PAUL DE COCK │ ELS ORTIBUS │ LEIVE HEYRMAN │ KATRIJN KLINGELS │ HILDE FEYS
Original Article, February 20168. The quest for patterns in dyskinetic cerebral palsy
KATE HIMMELMANN
Commentary on Monbaliu et al., February 20169. Burke–Fahn–Marsden dystonia severity, Gross Motor, Manual Ability, and Communication Function Classification scales in childhood hyperkinetic movement disorders including cerebral palsy: a ‘Rosetta Stone’ study
MARKUS C ELZE │ HORTENSIA GIMENO │ KYLEE TUSTIN │ LESLEY BAKER │ DANIEL E LUMSDEN │JANE L HUTTON │ JEAN-PIERRE S-M LIN
Original Article, February 2016, Editor’s Choice10. Same but different: analyzing hyperkinetic movement disorders
KATE HIMMELMANN
Commentary on Elze et al., February 2016
Participation is essential for children’s development. Children with disabilities are at high risk for restricted participation, with negative impact on their health and quality of life. The WHO International Classification of Functioning, Disability and Health for Children and Youth defines participation as ‘involvement in a life situation’. For children this includes participation in educational, social, recreational, and physical activities. Participation can be also considered as an index of physical and psychosocial health to be studied, by specific scales, as a major outcome measure for any intervention.
Much has moved on since that time, including the care of adults with autism and learning disability in the community. However, the interchange also sums up the reasons why this diverse field holds such interest for all, regardless of our professional background and whether we work in health, education, or social care. The challenges of the autism spectrum require the bringing together of a rich multi-professional body: a collaboration between basic scientists, clinicians, psychologists, teachers, and many others – including people with autism themselves, and their families, carers, and friends.
Despite the acknowledged importance of participation for research in childhood disabilities, published studies and reviews around this issue are still quite limited. The 14 articles included in this Virtual Issue of Developmental Medicine & Child Neurology capture some of the essence and complexity of this area.
Some papers highlight the need for researchers working in this field to clearly define the construct of the participation under study, because it remains ambiguous in many instances.
Other studies deal with the importance of the interplay between the support offered by the environment and the child’s functional limitations; these include task performance, fatigue, and weight management, as welll as such specific items as the possibility of riding a bicycle.
I enjoyed reading the systematic reviews that highlight the importance of promoting ‘real-world’ experience; person-environment transition; outdoor adventure for children with cerebral palsy, autism spectrum disorder, or other disabilities; and the necessity to innovate when promoting participation.
Finally, we know that adolescence is the crucial period for participation and also a time when many psycho-social crises can occur. But as indicated in this Virtual Issue, it is participation trajectories that give us the perspective to understand and improve this crucial component of health in our children.
- Giovanni Cioni
Chairman, European Academy of Childhood DisabilityVirtual Issue Articles:
1. Environmental impact on young children’s participation in home-based activities
ERIN C ALBRECHT | MARY A KHETANI
April 2017, Original Article2. Leisure participation–preference congruence of children with cerebral palsy: a Children’s Assessment of Participation and Enjoyment International Network descriptive study
CHRISTINE IMMS | GILLIAN KING | ANNETTE MAJNEMER | LISA AVERY | LISA CHIARELLO | ROBERT PALISANO | MARGO ORLIN | MARY LAW
April 2017, Original Article3. HIV encephalopathy with bilateral lower limb spasticity: upper limb motor function and level of activity and participation
THERESA N MANN | KIRSTEN A DONALD | BARBARA LAUGHTON | ROBERT P LAMBERTS | NELLEKE G LANGERAK
April 2017, Original Article4. Ability of independently ambulant children with cerebral palsy to ride a two-wheel bicycle: a case–control study
RACHEL TOOVEY | SUSAN M REID | BARRY RAWICKI | ADRIENNE R HARVEY | KERRIANNE WATT
April 2017, Original Article5. Fatigue and its relationship with physical activity, age, and body composition in adults with cerebral palsy
PATRICK G MCPHEE | LAURA K BRUNTON | BRIAN W TIMMONS | TODD BENTLEY | JAN WILLEM GORTER
April 2017, Original Article6. The efficacy of interventions to increase physical activity participation of children with cerebral palsy: a systematic review and meta-analysis
SARAH REEDMAN | ROSLYN N BOYD | LEANNE SAKZEWSKI
March 2017, Systemic Review7. Participation restriction in childhood phenotype of myotonic dystrophy type 1: a systematic retrospective chart review
CYNTHIA GAGNON | MARIE KIERKEGAARD | CATHERINE BLACKBURN | NICOLAS CHRESTIAN | MÉLISSA LAVOIE | MARIE-FRÉDÉRIC BOUCHARD | JEAN MATHIEU
March 2017, Original Article8. Course of employment in adults with cerebral palsy over a 14-year period
JOYCE L BENNER | SANDER R HILBERINK | THESSA VEENIS | WILMA M A VAN DER SLOT | MARIJ E ROEBROECK
March 2017 (Early View), Original Article9. Milestone achievement in emerging adulthood in spina bifida: a longitudinal investigation of parental expectations
CHRISTINA E HOLBEIN | KATHY ZEBRACKI | COLLEEN F BECHTEL | JACLYN LENNON PAPADAKIS | ELIZABETH FRANKS BRUNO | GRAYSON N HOLMBECK
March 2017, Original Article10. Participation trajectories: impact of school transitions on children and adolescents with cerebral palsy
CHRISTINE IMMS | BROOKE ADAIR
February 2017, Original Article11. Life course health development of individuals with neurodevelopmental conditions
ROBERT J PALISANO | BRIANO DI REZZE | DEBRA STEWART | PETER L ROSENBAUM | OKSANA HLYVA | MATTHEW FREEMAN | TRAM NGUYEN | JAN WILLEM GORTER
February 2017 (Early View), Invited Review12. Participation, both a means and an end: a conceptual analysis of processes and outcomes in childhood disability
CHRISTINE IMMS | MATS GRANLUND | PETER H WILSON | BERT STEENBERGEN | PETER L ROSENBAUM | ANDREW M GORDON
January 2017, Review13. The effectiveness of an outdoor adventure programme for young children with autism spectrum disorder: a controlled study
DITZA A ZACHOR | SHIRA VARDI | SHANI BARON-EITAN | INBAL BRODAI-MEIR | NOA GINOSSAR | ESTHER BEN-ITZCHAK
December 2016 (Early View), Original Article14. ‘Participation’: a systematic review of language, definitions, and constructs used in intervention research with children with disabilities
CHRISTINE IMMS | BROOKE ADAIR | DEB KEEN | ANNA ULLENHAG | MATS GRANLUND
January 2016, Systemic Review
In 1988 I went for a job interview for a senior paediatric training post in a regional referral centre which specialized in the assessment of children with autism and communication disorders. This outpatient-based service was the only children’s unit within a large hospital for adults with severe learning disability, many of whom had been admitted decades earlier with only the sketchiest medical assessments. A senior member of the panel asked me, ‘What possible contribution could a paediatrician make in dealing with children whose diagnosis is defined within psychiatric classification systems, and who frequently have other psychiatric co-morbidities?’ I was sufficiently riled up to respond, ‘Surely the question is what contribution a psychiatrist could make to children whose condition has a strong genetic aetiology, and who frequently have underlying neurological or metabolic conditions, or comorbidities requiring paediatric intervention such as seizures?’ After that foolish outburst, I looked around the room, and was hit by the heart-sinking realization that the panel comprised five psychiatrists and one paediatrician. Remarkably, although the ground failed to swallow me up and I was unable to rewind the words back into my mouth, they gave me the job.
Much has moved on since that time, including the care of adults with autism and learning disability in the community. However, the interchange also sums up the reasons why this diverse field holds such interest for all, regardless of our professional background and whether we work in health, education, or social care. The challenges of the autism spectrum require the bringing together of a rich multi-professional body: a collaboration between basic scientists, clinicians, psychologists, teachers, and many others – including people with autism themselves, and their families, carers, and friends.
This Virtual Issue of Developmental Medicine & Child Neurology captures the essence of that tapestry of knowledge, which is essential to the development of the field. With papers ranging from the metabolic underpinnings of the condition, right through to measuring outcomes and implementing specific interventions, it would be fair to say there is something for everyone in this interesting and wide-ranging collection.
-Hilary Cass br />Chair, British Academy of Childhood Disability
Virtual Issue Articles:
1. Prevalence of autism and attention-deficit–hyperactivity disorder in Down syndrome: a population-based study
ULRIKA WESTER OXELGREN | ÅSA MYRELID | GÖRAN ANNERÉN | BODIL EKSTAM | CATHERINE GÖRANSSON | AGNETA HOLMBOM | ANNE ISAKSSON | MARIE ÅBERG | JAN GUSTAFSSON | ELISABETH FERNELL
March 2017 (Editor’s Choice), Original Article2. Autism spectrum disorder and attention-deficit–hyperactivity disorder in Down syndrome
JOANNA F MOSS
March 2017, Commentary on Oxelgren et al.3. Autism spectrum disorder and other neurobehavioural comorbidities in rare disorders of the Ras/MAPK pathway
SHRUTI GARG | AMI BROOKS | AMY BURNS | EMMA BURKITT-WRIGHT | BRONWYN KERR | SUSAN HUSON | RICHARD EMSLEY | JONATHAN GREEN
February 2017 (Early View), Original Article4. The effectiveness of an outdoor adventure programme for young children with autism spectrum disorder: a contolled study
DITZA A ZACHOR | SHIRA VARDI | SHANI BARON-EITAN | INBAL BRODAI-MEIR | NOA GINOSSAR | ESTHER BEN-ITZCHAK
December 2016 (Early View), Original Article5. Disparities in adversity among children with autism spectrum disorder: a population-based study
KRISTEN L BERG | CHENG-SHI SHIU | KRUTI ACHARYA | BRADLEY C STOLBACH | MICHAEL E MSALL
November 2016, Original Article6. N-methyl-ᴅ-aspartate (NMDA) receptor antibodies encephalitis mimicking an autistic regression
YAEL HACOHEN | SUKHVIR WRIGHT | JONATHAN GADIAN | ANGELA VINCENT | MING LIM | EVANGELINE WASSMER | JEAN-PIERRE LIN
October 2016, Case Report7. Autistic regression and central nervous system autoimmunity
RUSSELL C DALE
October 2016, Commentary on Hacohen et al.8. Developing a classification system of social communication functioning of preschool children with autism spectrum disorder
BRIANO DI REZZE | PETER ROSENBAUM | LONNIE ZWAIGENBAUM | MARY JO COOLEY HIDECKER | PAUL STRATFORD | MARTHA COUSINS | CHANTAL CAMDEN | MARY LAW
September 2016 (Editor’s Choice), Original Article9. Measuring functional ability of autism spectrum disorder in a global context
PETRUS J DE VRIES | SVEN BÖLTE
September 2016, Commentary on Di Rezze et al.10. Inborn error metabolic screening in individuals with nonsyndromic autism spectrum disorders
JAUME CAMPISTOL | MARÍA DÍEZ-JUAN | LAURA CALLEJÓN | AROA FERNANDEZ-DE MIGUEL | MERCEDES CASADO | ANGELS GARCIA CAZORLA | REYMUNDO LOZANO | RAFAEL ARTUCH
August 2016, Original Article11. Inborn error metabolic screening in nonsyndromic autism spectrum disorders
GAIL REINER
August 2016, Commentary on Campistol et al.12. Testing two screening instruments for autism spectrum disorder in UK community child health services
TONY CHARMAN | GILLIAN BAIRD | EMILY SIMONOFF | SUSIE CHANDLER | ABI DAVISON-JENKINS | AJAY SHARMA | TONY O’SULLIVAN | ANDREW PICKLES
April 2016, Original Article13. Timely identification of children with autism: are we asking the right question?
KATRINA WILLIAMS
April 2016, Commentary on Charman et al.14. Validity, reliability, and usability of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test for autism spectrum disorders
JESSICA M KRAMER | KENDRA LILJENQUIST | WENDY J COSTER
March 2016, Original Article15. Appropriate outcome measurement for children with autism spectrum disorder
HELEN MCCONACHIE
March 2016, Commentary on Kramer et al.16. Emotional and behavioural problems in young children with autism spectrum disorder
SUSIE CHANDLER | PATRICIA HOWLIN | EMILY SIMONOFF | TONY O’SULLIVAN | EVELIN TSENG | JULIET KENNEDY | TONY CHARMAN | GILLIAN BAIRD
February 2016, Original Article17. Expanding our understanding of behavioural difficulties associated with autism spectrum disorder
ISABEL M SMITH
February 2016, Commentary on Chandler et al.18. Autism and inborn errors of metabolism: how much is enough?
MIYA R ASATO | AMY C GOLDSTEIN | MANUEL SCHIFF
September 2015, Opinion
The last 10 years have seen an explosion in our understanding of encephalitis, particularly the primary autoimmune mechanisms, and the interplay between infection and secondary autoimmune injury. It has been fascinating as these research findings have translated through to clinical practice, with numerous implications for diagnosis and treatment. This has required an expansive approach to therapies including immune-modulation, although the evidence base to support the more invasive therapies (e.g. plasmapheresis) is still relatively weak, and other resources are limited by either supply (e.g. immunoglobulin infusion) and/or cost (the ever expanding armoury of monoclonal antibodies). When there is a clear autoimmune marker, it is relatively easy to justify these therapies; when suspected but not proven, it is more difficult and uncertain territory for clinicians.
Increasingly, it has been recognized that autoimmune encephalitis may present in an indolent manner with neuropsychiatric features. There is some evidence that even modern atypical antipsychotic medications may be harmful in these disorders, and this can further exacerbate the clinical challenges. It remains to be seen whether a proportion of more chronic neuropsychiatric disorders could have an autoimmune component.
This Virtual Issue pulls together a number of interesting articles in this field, which I hope will prompt further research and clinical progress.
- Martin Smith
Associate EditorVirtual Issue Articles:
1. Long-term outcomes of infective encephalitis in children: a systematic review and meta-analysis
GULAM KHANDAKER | JENNY JUNG | PHILIP N BRITTON | CATHERINE KING | J KEVIN YIN | CHERYL A JONES
Review, November 20162. N-methyl-D-aspartate (NMDA) receptor antibodies encephalitis mimicking an autistic regression
YAEL HACOHEN | SUKHVIR WRIGHT | JONATHAN GADIAN | ANGELA VINCENT | MING LIM | EVANGELINE WASSMER | JEAN-PIERRE LIN
Case Report, October 20163. Autistic regression and central nervous system autoimmunity
RUSSELL C DALE
Commentary on Hacohen et al., October 20164. Paediatric brainstem encephalitis associated with glial and neuronal autoantibodies
YAEL HACOHEN | YUKIHIRO NISHIMOTO | YUKI FUKAMI | BETHAN LANG | PATRICK WATERS | MING J LIM | NOBUHIRO YUKI | ANGELA VINCENT
Original Article, August 20165. Widening the spectrum of autoantibodies in pediatric brainstem encephalitis
MELANIE RAMBERGER | MARKUS REINDL
Commentary on Hacohen et al., August 20166. Symptomatic treatment of children with anti-NMDAR encephalitis
SHEKEEB S MOHAMMAD | HANNAH JONES | MARTIN HONG | MARGHERITA NOSADINI | CYNTHIA SHARPE | SEKHAR C PILLAI | FABIENNE BRILOT | RUSSELL C DALE
Original Article (Editor’s Choice), April 20167. N-methyl-D-aspartate receptor antibody encephalitis: how do we evaluate symptomatic treatment?
JONATHAN GADIAN | MING LIM
Commentary on Mohammad et al., April 20168. FreeSurfer is useful for early detection of Rasmussen’s encephalitis prior to obvious atrophy
AARON D BOES | PAUL CARUSO | ANN-CHRISTINE DUHAIME | BRUCE FISCHL
Clinical Insight, February 20169. Mesenchymal stem cell application in children with subacute sclerosing panencephalitis
BARIŞ KUŞKONMAZ | DUYGU UÇKAN | DILEK YALNIZOĞLU | MINTAZE GÜNEL | KADER KARLI OĞUZ | BAHADIR KONUŞKAN | BANU ANLAR
Case Report, September 201510. Intrathecal treatment of anti-N-Methyl-D-aspartate receptor encephalitis in children
SARAH TATENCLOUX | PASCALE CHRETIEN | VERONIQUE ROGEMOND | JEROME HONNOROT | MARC TARDIEU | KUMARAN DEIVA
Case Report, January 201511. Does early treatment improve outcomes in N-methyl-D-aspartate receptor encephalitis?
SUSAN BYRNE | BLATHANID MCCOY | BRYAN LYNCH | DAVID WEBB | MARY D KING
Case Report, August 201412. N-methyl-D-aspartate receptor antibody-associated movement disorder without encephalopathy
YAEL HACOHEN | NOMAZULU DLAMINI | TAMMY HEDDERLY | ELAINE HUGHES | MARTIN WOODS | ANGELA VINCENT | MING LIM
Case Report, February 2014
I am a strong advocate of plain language summaries of research findings. A plain language summary is a brief version of an academic paper or other scientific report that is produced to be accessible to everyone. It is written clearly and includes explanations for any technical terms. My research group, Peninsula Cerebra Research Unit (PenCRU), publishes plain language summaries alongside our academic articles when they are published in peer-reviewed journals (www.pencru.org/projectsmeetings/plain_language_summaries). The aim is to tell people other than academics about the information that research produces. Our target audience is primarily the families of children with disabilities; however, others seeking a free, accessible summary can read them too.
We do this for a number of reasons. First, families as well as clinicians need information from research to inform decision-making. They also want to access the latest information about the conditions of their children in order to be empowered in their caring role. Second, we want to cultivate a culture where research is perceived as a partnership between families, clinicians, and researchers. The summaries are one way to engage and create a dialogue where emerging knowledge is shared. Third, the funding for research comes from public taxation and relevant charities. Therefore it is vital that those who ‘pay’ for research get to see what they are supporting and are able to evaluate the findings.
Journal articles are written for a scientific audience. The Equator Network reporting guidelines (www.equator-network.org) ensure that papers are written comprehensively for scientific appraisal and DMCN uses these in our editorial processes. However, this means that the scientific paper may often be longer and more detailed than the ‘public reader’ wants. Necessarily there will sometimes be a plethora of acronyms and other jargon.
When PenCRU first considered plain language summaries we met with parent carers and designed a template. Key elements include a clear, catchy, comprehensible headline title (vs an impenetrable, scientific one) and key findings presented as bullet points (not dissimilar to the ‘What this paper adds’ we use in the journal). For those who want more detail there are then sections on the following questions: Who carried out this research and why? What did we do? What did we find? What’s next? Our aim is to not exceed two or three pages. All our summaries are reviewed by parent carers before publication to ensure the language is accessible.
Articles in this DMCN Virtual Issue all have a plain language summary that is posted on the Scope website (http://www.scope.org.uk/support/professionals/medical). The papers cover a range of conditions, interventions, and research designs. Each has a succinct and accessible summary that can be readily digested to enable readers to decide if they want to know more. Each summary could go further to provide more plain language details, but all the papers have now passed their embargo period so are free to access.
Central to the mission of Mac Keith Press is the publication and dissemination of research to people with disabilities and those who care for them, and the promotion of public understanding of disability. I believe plain language summaries are coherent with these goals. The next challenge is how to spread the word so that people can find, read, and discuss the summaries.
- Christopher Morris
PenCRU
University of Exeter, Devon, UKVirtual Issue Articles:
1. Quantifying multifaceted needs captured at the point of care. Development of a Disabilities Terminology Set and Disabilities Complexity Scale
KAREN A HORRIDGE │ CARL HARVEY │ KENNETH MCGARRY │ JANE WILLIAMS │ GABRIEL WHITLINGUM │ MARY BUSK │ SUZANNE FOX │ GILLIAN BAIRD │ ANDY SPENCER
Original Article, June 20162. Effect of parent-delivered action observation therapy on upper limb function in unilateral cerebral palsy: a randomized controlled trial
EMMA KIRKPATRICK │ JANICE PEARSE │ PETER JAMES │ ANNA BASU
Original Article, October 20163. Preterm birth and behaviour problems in infants and preschool-age children: a review of the recent literature
ELENA ARPI │ FABRICIO FERRARI
Review, September 20134. The potential for stem cell therapies to have an impact on cerebral palsy: opportunities and limitations
CRYSTAL A RUFF │ STUART D FAULKNER │ MICHAEL G FEHLINGS
Review, August 20135. Sleep disorders in children with traumatic brain injury: a case of serious neglect
GREGORY STORES │ RACHEL STORES
Review, September 20136. A systematic review of interventions for children with cerebral palsy: state of the evidence
IONA NOVAK │ SARAH MCINTYRE │ CATHERINE MORGAN │ LANIE CAMPBELL │ LEIGHA DARK │ NATALIE MORTON │ ELISE STUMBLES │ SALLI-ANN WILSON │ SHONA GOLDSMITH
Review, October 20137. Effectiveness of hand splints in children with cerebral palsy: a systematic review with meta-analysis
MICHELLE JACKMAN │ IONA NOVAK │ NATASHA LANNIN
Review, February 20148. Motor learning in children with hemiplegic cerebral palsy: feedback effects on skill acquisition
PATRICIA A BURTNER │ ROBIN LEINWARD │ KATHERINE J SULLIVAN │ HUI-TING GOH │ SHAILESH S KANTAK
Original Article, March 20149. Selection criteria for selective dorsal rhizotomy in children with spastic cerebral palsy: a systematic review of the literature
SEBASTIAN GRUNT │ A GRAHAM FIEGGEN │ R JEROEN VERMEULEN │ JULES G BECHER │ NELLEKE G LANGERAK
Review, April 201410. The association between children’s contact with people with disabilities and their attitudes towards disability: a systematic review
MEGAN MACMILLAN │ MARK TARRANT │ CHARLES ABRAHAM │ CHRISTOPHER MORRIS
Review, June 201411. Risk of cerebral palsy in relation to pregnancy disorders and preterm birth: a national cohort study
HÅVARD TRØNNES │ ALLEN J WILCOX │ ROLV T LIE │ TROND MARKESTAD │ DAG MOSTER
Original Article, August 2014
In 1994, the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) found it impossible to summarize what had been learned from the preceding half-century of treating individuals with cerebral palsy (CP). This was because of the wide diversity of measured outcomes, weak studies, and overall paucity in the literature. A systematic review process was developed using then-new concepts of (1) dimensions of disability that evolved into the International Classification of Health, Functioning and Disability; and (2) strength of evidence (e.g. levels of evidence) to describe knowledge and guide research.
Whereas outcomes only concerned changes in body structure and function, functional activity is now commonly measured. Participation and environmental measures are also of increasing interest with more available randomized controlled trials (RCTs) available.
This 2016 update about intervention in CP includes a number of RCTs and reviews of evidence. Damiano’s paper thoughtfully contributes to the important research discussions. Specifically, the limitation of group outcomes from even the strongest study is problematic for clinical decision-making because the outcomes are interpreted on averaged results across all participants. This cannot inform about the efficacy – or detrimental effect – of the intervention on an individual. Single-subject research design (SSRD) can be used instead and, indeed, the AACPDM developed SSRD levels of evidence..
In a massive effort, Novak et al. aggregated and analyzed voluminous data from 64 interventions and distilled information about ‘what works’ (or not) for 131 types of outcomes. Obviously there are simplifications when using classifications and making cut-off judgements, and the paper generated much constructive debate in the field in its own right. But this work provides a template for future evaluations and comparisons that both clients and clinicians can readily grasp.
- Charlene Butler
Past-President (1994–1995)
AACPDMPodcasts for this Virtual Issue available in Spanish and Portugese
Virtual Issue Articles:
1. Efficacy of suit therapy on functioning in children and adolescents with cerebral palsy: a systematic review and meta-analysis
ELISABETE MARTINS │ RITA CORDOVIL │ RAUL OLIVEIRA │ SARA LETRAS │ SORAIA LOURENÇO │ INÊS PEREIRA │ ANA FERRO │ INÊS LOPES │ CLAUDIA R SILVA │ MARTA MARQUES
Review, April 20162. Efficacy of three therapy approaches in preschool children with cerebral palsy: a randomized controlled trial
ANNE J A KRUIJSEN-TERPSTRA │ MARJOLIJN KETELAAR │ OLAF VERSCHUREN │ JAN WILLEM GORTER │ RIMKE C VOS │ JOHANNES VERHEIJDEN │ MARIAN J JONGSMANS │ ANNE VISSER-MEILY
Original Article, Published online November 20153. Exercise interventions improve postural control in children with cerebral palsy: a systematic review
ROSALEE DEWAR │ SARAH LOVE │ LEANNE MARIE JOHNSTON
Review (Editor’s Choice), June 20154. Can a lifestyle intervention programme improve physical behaviour among adolescents and young adults with spastic cerebral palsy? A randomized controlled trial
JORRIT SLAMAN │ MARIJ ROEBROECK │ ANNET DALLMIJER │ JOS TWISK │ HENK STAM │ RITA VAN DEN BERG-EMONS │ LEARN 2 MOVE RESEARCH GROUP
Original Article, February 20155. Early identification and intervention in cerebral palsy
ANNA HERSKIND │ GORM GREISEN │ JENS BO NIELSEN
Review, January 20156. The effects of Kinesio Taping on body functions and activity in unilateral spastic cerebral palsy: a single-blind randomized controlled trial
OZGUN KAYA KARA │ SONGUL ATASAVUN UYSAL │ DUYGU TURKER │ SEDEF KARAYAZGAN │ MINTAZE KEREM GUNEL │ GUL BALTACI
Original Article, January 20157. Meaningfulness of mean group results for determining the optimal motor rehabilitation program for an individual child with cerebral palsy
DIANE L DAMIANO
Review, December 20148. Reported outcomes of lower limb orthopaedic surgery in children and adolescents with cerebral palsy: a mapping review
NICHOLA C WILSON │ JIMMY CHONG │ ANNA H MACKEY │ NGAIRE S SCOTT
Review, September 20149. Guidelines for future research in constraint-induced movement therapy for children with unilateral cerebral palsy: an expert consensus
ANN CHRISTIN ELIASSON │LENA KRUMLINDE-SUNDHOLM │ ANDREW M GORDON │ HILDE FEYS │ KATRIJN KLINGELS │ PAULINE B M AARTS │ EUGENE RAMECKERS │ ILONA AUTTI-RÄMÖ │ BRIAN HOARE
Review, February 201410. Surgical intervention for feeding and nutrition difficulties in cerebral palsy: a systematic review
ELIZABETH D FERLUGA │ NILA A SATHE │ SHANTHI KRISHNASWAMI │ MELISSA L MCPHEETERS
Review, January 201411. A systematic review of interventions for children with cerebral palsy: state of the evidence
IONA NOVAK │ SARAH MCINTYRE │ CATHERINE MORGAN │ LANIE CAMPBELL │ LEIGHA DARK │ NATALIE MORTON │ ELISE STUMBLES │ SALLI-ANN WILSON │ SHONA GOLDMSITH
Review, October 201312. Evidence for outcomes of motivational rehabilitation interventions for children and adolescents with cerebral palsy: an American Academy for Cerebral Palsy and Developmental Medicine systematic review
SANDY K TATLA │ KAREN SAUVE │ NAZNIN VIRJI-BABUL │ LIISA HOLSTI │ CHARLENE BUTLER │ HENDRIK F MACHIEL VAN DER LOOS
Review (Editor’s Choice), July 201313. Efficacy of botulinum toxin A in children with cerebral palsy in Gross Motor Function Classification System levels IV and V: a systematic review
TAMIS W PIN │ JESSICA ELMASRY │ JENNY LEWIS
Review, April 2013
Virtual Issue Collection: Mitochondrial Disorders
Over a billion years ago, a free-living bacterium was apparently engulfed and integrated into a host cell, thus beginning the history of mitochondria. However, our understanding of mitochondrial disease has somewhat lagged until recent times. We have been greatly assisted in this process by advances in genetics, with the human mitochondrial DNA genome completely sequenced in 1981, and with new mutations and mechanisms now cropping up with bewildering frequency. Nonetheless, the little mites continue to cause havoc: mitochondrial diseases remain particularly challenging to diagnose and manage, as discussed in the papers in this Virtual Issue. Because the papers stretch back over a decade, they also provide an interesting historical perspective.
The first hurdle is to suspect a mitochondrial disorder, even though some may have quite non-specific presentations in infancy and childhood, and genotype–phenotype relationships are anything but tight. It can be specified that neurological manifestations are quite common, with certain constellations of features being obvious red flags. Then there is the issue of which samples to test and how to interpret the biochemistry. For example, how low is too low for respiratory chain enzyme activity and how reassured should you be by a normal lactate? The genetic mutation identification stage follows, frequently with a description of a new presentation and expanding phenotype. After this ‘zenith’, things often go downhill as management of mitochondrial disease unfortunately remains largely symptomatic. Undaunted, researchers continue to seek new treatments, but the varied presentation and disease course present major challenges for the development of robust outcome measures, which adds to the difficulties faced by mitochondrial trialists.
Mitochondria marched audaciously into the international arena in 2015 when the UK Parliament became the first to legalize mitochondrial donation in the face of huge controversy over ‘three parent babies’. This series of events provoked an invited talk at the British Paediatric Neurology Association (BPNA) meeting last year* entitled ‘Mitochondrial disease and its prevention – power, sex and politics’. It seems highly likely that 2016’s meeting will also be influenced by these pervasive organelles.
*2015 BPNA Abstracts
*2016 BPNA Abstracts- Anna Basu
Newcastle University, UKVirtual Issue Articles:
1. Towards the harmonization of outcome measures in children with mitochondrial disorders
SASKIA KOENE │ MEREL JANSEN │ CHRIS M VERHAAK │ REMCO L A DE VRUEH │ IMELDA J M DE GROOT │ JAN A M SMEITINK
Review, August 20132. Mitochondrial disease and epilepsy
SHAMIMA RAHMAN
Review, May 20123. Peripheral neuropathy associated with mitochondrial disease in children
MANOJ P MENEZES │ ROBERT A OUVRIER
Review, May 20124. Expanding the clinical phenotype of the mitochondrial m.13513G>A mutation with the first report of a fatal neonatal presentation
CLARA D M VAN KARNEBEEK │ PAULA J WATERS │ MICHAEL A SARGENT │ MICHELE M MEZEY │ LEE-JUN WONG │ JING WANG │ SYLVIA STÖCKLER-IPSIROGLU
Case Report, June 20115. Expanding the clinical phenotype of the mitochondrial m.13513G>A mutation with the first report of a fatal neonatal presentation: importance of DNA collection for post-mortem diagnosis
ANDREA L GROPMAN
Commentary on van Karnebeek et al., June 20116. Mitochondrial diseases in childhood: a clinical approach to investigation and management
JILL EDITH KISLER │ ROGER GRAHAM WHITTAKER │ ROBERT MCFARLAND
Review, May 20107. The clinical presentation of mitochondrial diseases in children with progressive intellectual and neurological deterioration: a national, prospective, population-based study
CHRISTOPHER M VERITY │ ANNE MARIE WINSTONE │ LESLEY STELLITANO │ DEEPA KRISHNAKUMAR │ ROBERT WILL │ ROBERT MCFARLAND
Original Article, May 20108. Clinical presentation of mitochondrial diseases in children with progressive intellectual and neurological deterioration
MARK SHARRARD
Commentary on Verity et al., May 20109. Decreased activities of mitochondrial respiratory chain complexes in non-mitochondrial respiratory chain diseases
JOANNIE HUI │ DENISE M KIRBY │ DAVID R THORBURN │ AVIHU BONEH
Original Article, February 200610. Mitochondrial dysfunction in autism spectrum disorders: a population-based study
G OLIVEIRA │ L DIOGO │ M GRAZINA │ P GARCIA │ A ATAĺDE │ C MARQUES │ T MIGUEL │ L BORGES │ A M VICENTE │ C R OLIVEIRA
Original Article, March 2005
Virtual Issue Collection: Cerebral Palsy Grows Up: Adulthood and the Questions that Remain
Cerebral palsy (CP) came into its own as a focus for clinical and academic study in the second half of the 20th century. While there is much still to learn, huge strides were made in understanding aetiologies and causal pathways, leading to prevention (e.g. rubella, Rh incompatibility, iodine deficiency). There was a revolution in thinking about approaches to management. And many of us experienced a dawning awareness that children with CP would now become adults with CP! In the modern era we now know that there are three times as many adults with CP as there are children – a reflection of the fact that young people with CP rarely die of it and are not ‘cured’ at age 18.
As official journal of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), we are proud to present the excellent collection of papers in this Virtual Issue. They highlight the challenges and opportunities that everyone in the field must now address with as much vigour and rigour as has been brought to the issues of infants and young children with CP in the past 50 years.
CP has traditionally been thought of as a ‘children’s condition’, but all of us who work in the field now face the sobering reality that the lives of adults with CP are not nearly as productive and healthy as they could and should be. This is perhaps partly because (as someone wittily commented some years ago) we don’t have paediatricians for adults! What they meant, of course, is that at our best our multi-professional teams work with children and families in the developing years, in a context of family-centred services, and provide a comprehensive approach to life with CP.
The world of adult health and social care offers a starkly different approach, one that may not best support the continuing development of people with child-onset impairments. Two corollaries of this observation logically follow on: (1) those of us who work with infants, children, and young people with CP (and related conditions) must now strike out as advocates for our former patients, and (2) we need to learn lessons about the lives of adults with CP – both their successes and their needs – and close the loop by feeding those lessons back into the services we now provide to children. Hopefully, many of the less salutary outcomes of adults with CP can be prevented when we understand these causal pathways and take appropriate anticipatory actions.
- Peter Rosenbaum
North American EditorVirtual Issue Articles:
1. Survival with cerebral palsy over five decades in western Sweden
KATE HIMMELMANN │ VALTER SUNDH
Original Article, Aug 20152. Improving survival in cerebral palsy: where do we go from here?
SUSAN M REID
Commentary on Himmelmann and Sundh, Aug 20153. Extrapolating published survival curves to obtain evidence-based estimates of life expectancy in cerebral palsy
STEVEN M DAY │ ROBERT J REYNOLDS │ SCOTT J KUSH
Early View, July 20154. Can a lifestyle intervention programme improve physical behaviour among adolescents and young adults with spastic cerebral palsy? A randomized controlled trial
JORRIT SLAMAN │ MARIJ ROEBROECK │ ANNET DALLMIJER │ JOS TWISK │ HENK STAM │ RITA VAN DEN BERG-EMONS │ LEARN 2 MOVE RESEARCH GROUP
Original Article, Feb 20155. Heavy going but making progress: challenges for increasing physical activity in young people with cerebral palsy
CAROL MAHER
Commentary on Slaman et al., Feb 20156. Vocational rehabilitation services and employment outcomes for adults with cerebral palsy in the United States
I-CHUN HUANG │ JEROME J HOLZBAUER │ EUN-JEONG LEE │ JULIE CHRONISTER │ FONG CHAN │ JOHN O’NEIL
Original Article (Editor’s Choice), Nov 20137. Employment outcomes for adults with cerebral palsy: an issue that needs to be addressed
LAURA K VOGTLE
Commentary on Huang et al., Nov 20138. Cerebral palsy, neurogenic bladder, and outcomes of lifetime care
KEVIN P MURPHY │ SUSAN A BOUTIN │KATHY R IDE
Original Article, Oct 20129. An urgency about bladder dysfunction in cerebral palsy
JILDA VARGUS-ADAMS
Commentary on Murphy et al., Oct 201210. Chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy
WILMA M A VAN DER SLOT │ CHANNAH NIEUWENHUIJSEN │ RITA J G VAN DEN BERG-EMONS │ MICHAEL P BERGEN │ SANDER R HILBERINK │ HENK J STAM │ MARIJ E ROEBROECK
Original Article, Sept 201211. Unraveling the sources of chronic pain in cerebral palsy
JOHN BELEW
Commentary on van der Slot et al., Sept 201212. Adults with a diagnosis of cerebral palsy: a mapping review of long-term outcomes
GAYATRI KEMBHAVI │ JOHANNA DARRAH │ KELSEY PAYNE │ DEVON PLESUK
Review, July 201113. Adult outcomes and lifespan issues for people with childhood-onset physical disability
MARIJ E ROEBROECK │ REIDUN JAHNSEN │ CARLOS CARONA │ RUTH M KENT │ M ANNE CHAMBERLAIN
Review, Aug 200914. Walking function, pain, and fatigue in adults with cerebral palsy: a 7-year follow-up study
ARVE OPHEIM │ REIDUN JAHNSEN │ ELISABETH OLSSON │ JOHAN K STANGHELLE
Original Article, May 200915. Walking function, pain, and fatigue in adults with cerebral palsy
CHRISTINE M HOULIHAN
Commentary on Opheim et al., May 2009
Virtual Issue Collection: Rett syndrome – in celebration of the work of Bengt Hagberg
Rett syndrome is characterized by early neurological regression that severely affects motor, cognitive, and communication skills, by autonomic dysfunction, and often a seizure disorder. The clinical complexity of Rett syndrome and the rapidly developing molecular insights gained into its pathophysiology make this disorder unique in many respects. But they also bear important implications for understanding a host of other neurogenetic or neurodevelopmental conditions, including autism, as well as for designing therapeutic strategies for them.The story of the syndrome as it is recorded in the medical literature began with Andreas Rett's description of young females with severe cognitive impairment, hand and gait apraxia, and most notably stereotyped hand wringing movements in a German-language newsletter in Vienna in 1966. But the condition became widely recognized about 15 years later, when Bengt Hagberg reported on 16 other young females with the same presentation, which he had started identifying in 1960. Professor Hagberg's presentation generated stimulating discussion and soon an international series of patients was described, Rett's original publication was retrieved and diagnostic criteria were suggested. Identification of causative mutations in MECP2 and a few other genes have improved the clinical approach and allowed the development of several mouse models for research. Professor Hagberg also edited a classic text, ‘Rett Syndrome – Clinical & Biological Aspects’, which Mac Keith Press published in 1973 as part of the Clinics in Developmental Medicine series.
All this has resulted in fostering high quality studies addressing many aspects of the lives of people with Rett syndrome, including particularly interesting ones published in Developmental Medicine & Child Neurology over the years. In this Virtual Issue, we have collected stimulating research papers and discussions about motor activity, cognition, language, health issues, sleep, epilepsy, mental health, phenotype-genotype relationships, and collaborative research.
We dedicate this Virtual Issue to Bengt Hagberg, who passed away this year, in view of keeping alive the memory of his major contribution to the understanding of Rett syndrome, as of many other genetic and metabolic encephalopathies, and most of all his selfless dedication to children with neurodevelopmental disorders.
- Bernard Dan
Virtual Issue Articles:
1. A validation study of a modified Bouchard activity record that extends the concept of ‘uptime’ to Rett syndrome
LEON LOR, KYLIE HILL, PETER JACOBY, HELEN LEONARD, JENNY DOWNS
Original Article2. Measuring gross motor activities in Rett syndrome
PETER HUMPHREYS
Commentary on Lor et al.3. Prevalence, clinical investigation, and management of gallbladder disease in Rett syndromePrevalence, clinical investigation, and management of gallbladder disease in Rett syndrome
MICHAEL FREILENGER, MICHAEL BÕHM, INES LANATOR, KLARA VERGESSLICH-ROTHSCHILD, WOLF-DIETRICH HUBER, ALISON ANDERSON, KINGSLEY WONG, GORDON BAIKIE, MADHUR RAVIKUMARA, JENNY DOWNS, HELEN LEONARD
Original Article4. Adolescent onset cognitive regression and neuropsychiatric symptoms associated with the A140V MECP2 mutation
SUNITA VENKATESWARAN, HUGH J MCMILLAN, ASIF DOJA, PETER HUMPHREYS
Case Report5. Resourceful and creative methods are necessary to research rare disorders
HELEN LEONARD, ALISON ANDERSON, AMI BEBBINGTON, XINHUA BAO, KINGSLEY WONG, SIMON WILLIAMS, JENNY DOWNS
Letter to the Editor6. Using a large international sample to investigate epilepsy in Rett syndrome
XINHUA BAO, JENNY DOWNS, KINGSLEY WONG, SIMON WILLIAMS, HELEN LEONARD
Original Article7. How much further can large international databases take Rett syndrome research?
ANGUS CLARKE
Commentary on Bao et al.8. Respiratory and sleep disorders in female children with atypical Rett syndrome caused by mutations in the CDKL5 gene
EVELINE E O HAGEBEUK, RENILDE A S VAN DEN BOSSCHE, AL W DE WEERD
Case Report9. Rett syndrome: an eye-tracking study of attention and recognition memory
SUSAN A ROSE, ALEKSANDRA DJUKIC, JEFFERY J JANKOWSKI, JUDITH F FELDMAN, IRIS FISHMAN, MARIA VALICENTI-MCDERMOTT
Original Article10. The need for unbiased cognitive assessment in Rett syndrome: is eye tracking the answer
BREANNE BYIERS, FRANK SYMONS
Commentary on Rose et al.11. Early speech–language development in females with Rett syndrome: focusing on the preserved speech variant
PETER B MARSCHIK, GIORGIO PINI, KATRIN D BARTL-POKORNY, MARTIN DUCKWORTH, MARKUS GUGATSCHKA, RALF VOLLMANN, MICHELE ZAPELLA, CHRISTA EINSPIELER
Original Article12. Clinical variability in early speech–language development in females with Rett syndrome
SAROJINI BUDDEN
Commentary on Marschik et al.
Virtual Issue Collection: Activity and Exercise Therapies
Diseases related to lifestyle such as diabetes, atherosclerosis, and obesity have been sweeping through Western countries as an epidemic in the past 10 to 20 years. According to many predictions the rest of the world will soon follow – and has to some extent already started to do so. The increasing incidence of childhood obesity in many countries is especially worrying, as it forecasts diabetes and atherosclerosis as these children grow older. Foods high in energy-rich fat and a lack of exercise are the main culprits in this development and most countries now have programmes that encourage families to eat foods low in fat and to exercise more.Children with disabilities are especially at risk and require special attention. For instance, children with cerebral palsy have been shown in a number of studies to be far less physically active than their peers. It is a tremendous challenge for health care professionals to help these children and their families to find ways of overcoming the barriers that prevent them from being more active. This is important not only because of the disease risk associated with lack of exercise, but also because lack of exercise contributes importantly to the severity of their disability (lack of exercise makes muscle atrophy and muscle weakness worse and may also be a factor in the development of contractures). It is, thus, a vicious cycle that we need to break as quickly as possible, to ensure that exercise leads to better function and thereby better possibilities of being physically active, leading to more exercise, etc.
The present Virtual Issue of Developmental Medicine & Child Neurology, as well as the upcoming European Academy of Childhood Disability (EACD) meeting in Copenhagen, focus on the importance of exercise for children with disabilities and what we can do to help them to become more active. Hopefully, the articles and presentations may be an inspiration for researchers and therapists so that we can make a collective and coordinated effort to move this important issue in the right direction.
- Jens Bo Nielsen
EACD
Meeting President, Copenhagen 2015Podcasts for this Virtual Issue available in Spanish and Portuguese
Virtual Issue Articles:
1. Validity of the OMNI rating scale of perceived exertion scale for children and adolescents with cerebral palsy
MARIA FRAGALA-PINKHAM, MARGARET E O’NEIL, NANCY LENNON, JEFFREY L FORMAN, STEWART G TROST
Original Article2. Movement towards enhancing self-management and exercise prescription through use of the OMNI Walk/Run Rating Perceived Exertion scale
LAURA K BRUNTON
Commentary on Fragala-Pinkham et al.3. Associations between fitness and mobility capacity in school-aged children with cerebral palsy: a longitudinal analysis
ASTRID C J BALEMANS, LEONTIEN VAN WELY, JULES G BECHER, ANNET J DALLMEIJER
Original Article4. Exercise interventions improve postural control in children with cerebral palsy: a systematic review
ROSALEE DEWAR, SARAH LOVE, LEANNE MARIE JOHNSON
Review5. Birthweight, body composition, and motor performance in 7- to 10-year-old children
MARCOS ANDRÉ MOURA-DOS-SANTOS, MARCELUS BRITO DE ALMEIDA, RAUL MANHÃES-DE-CASTRO, PETER T KATZMARZYK, JOSÉ ANTÓNIO RIBEIRO MAIA, CAROL GÓIS LEANDRO
Original Article6. Neuromuscular performance deficits in low birthweight children: a target for physical activity interventions?
DANIEL D COHEN
Commentary on Moura-dos-Santos et al.7. Factors associated with physical activity in children and adolescents with a physical disability: a systematic review
MANON A T BLOEMEN, FRANK J G BACKX, TIM TAKKEN, HARRIET WITTINK, JOYCE BENNER, JURGEN MOLLEMA, JANKE F DE GROOT
Review8. Can a lifestyle intervention programme improve physical behaviour among adolescents and young adults with spastic cerebral palsy? A randomized controlled trial
JORRIT SLAMAN, MARIJ ROEBROECK, ANNET DALLMIJER, JOS TWISK, HENK STAM, RITA VAN DEN BERG-EMONS, LEARN 2 MOVE RESEARCH GROUP
Original Article9. Heavy going but making progress: challenges for increasing physical activity in young people with cerebral palsy
CAROL MAHER
Commentary on Slaman et al.10. Characteristics associated with physical activity among independently ambulant children and adolescents with unilateral cerebral palsy
LOUISE E MITCHELL, JENNY ZIVIANI, ROSLYN N BOYD
Original Article11. Physical inactivity and secondary health complications in cerebral palsy: chicken or egg?
MARK PETERSON
Commentary on Mitchell et al.12. Duration and patterns of habitual physical activity in adolescents and young adults with cerebral palsy
ANAT SHKEDY RABANI, NETTA HARRIES, IBTISAM NAMOORA, MUHAMMED D AL-JARRAH, AMIR KARNIEL, SIMONA BAR-HAIM
Original Article13. Sedentary behaviour in adolescents and young adults with cerebral palsy
NICHOLAS F TAYLOR
Commentary on Shkedy Rabani et al.
Virtual Issue Collection: Autism Spectrum Disorders
As official journal for the British Academy of Childhood Disability (BACD), DMCN presents this Virtual Issue on the theme of the 2015 BACD Annual Scientific Meeting: Autism – Science to Service Delivery.Children and young people with diagnosed and yet-to-be-diagnosed autism spectrum disorders are well represented in paediatric disability, neurology, and child and adolescent mental health clinics and wards, regardless of country or setting, making this topic of wide interest for everyone. Diagnosing autism spectrum disorders accurately, in a timely way allows for early intervention, sharing of information and appropriate support across all settings for children, young people, and their families, all with the goal of achieving the best outcomes that matter for them.
New light is shed on the origins of autism spectrum disorders by understanding their association with congenital anomalies,1,2 with exposure in utero to medication and supplements,3 and with the cerebral palsies.4,5 The burgeoning knowledge from new genetic techniques increases our understanding of associations between autism spectrum disorders and various gene mutations, chromosomal deletions, and duplications.6 Many more detailed genotype-physical and phenotype-neuro-behavioural phenotype associations are likely to be described in the coming decade, with the possibility of even more precise diagnoses informing tailored care and management plans, leading to better outcome opportunities.
Diagnostic assessment for autism spectrum disorders can be challenging, despite the existence of various tools and structured assessments. This can be especially so for children and young people with visual impairments.7,8
Many people with autism spectrum disorders do not consider themselves to be disabled, rather as seeing and understanding the world differently to other people, adding to the diversity of humanity. However, for some, aspects of autism can be challenging and present barriers to participation and quality of life, sufficient to ask the question: is autism curable?9 Goal setting and care planning with children and young people with autism spectrum disorders can contribute to improved outcomes in terms of participation in daily activities, social communication, and play that are relevant to them.10,11
Much more is known about the autism spectrum disorders, their origins, associations and consequences than when Leo Kanner first described autism in 1943. There is, however, a long way to go before a full understanding is reached and further research in the field is needed and to be welcomed.
- Karen Horridge
Chair
British Academy of Childhood DisabilityPodcasts for this Virtual Issue available in Spanish and Portugese
Virtual Issue Articles:
1. The association between congenital anomalies and autism spectrum disorders in a Finnish national birth cohort
LAUREN TIMONEN-SOIVIO, RAIJA VANHALA, HELI MALM, SUSANNA LEIVONEN, ELINA JOKIRANTA, SUSANNA HINKKA-YLI-SALOMÄKI, MIKA GISSLER, ALAN S BROWN, ANDRE SOURANDER
Original Article2. Congenital anomalies and etiological diversity in autism
LONNIE ZWAIGENBAUM
Commentary on Timonen-Soivio et al.3. Valproate and folic acid in pregnancy: associations with autism
PETER BAXTER
Editorial4. Prevalence of cerebral palsy, co-occurring autism spectrum disorders, and motor functioning – Autism and Developmental Disabilities Monitoring Network, USA, 2008
DEBORAH CHRISTENSEN, KIM VAN NAARDEN BRAUN, NANCY S DOERNBERG, MATTHEW J MAENNER, CARRIE L ARNESON, MAUREEN S DURKIN, RUTH E BENEDICT, RUSSELL S KIRBY, MARTHA S WINGATE, ROBERT FITZGERALD, MARSHALYN YEARGIN-ALLSOPP
Original Article5. The intriguing relationship between cerebral palsy and autism
LONNIE ZWAIGENBAUM
Commentary on Christensen et al.6. The genetic landscape of autism spectrum disorders
RASIM O ROSTI, ABDELRAHIM A SADEK, KEITH K VAUX, JOSEPH G GLEESON
Review7. Autism assessment in children with optic nerve hypoplasia and other vision impairments
MARIAN E WILLIAMS, CASSANDRA FINK, IRINA ZAMORA, MARK BORCHERT
Original Article, Editor’s Choice8. Assessment of autism in children with visual impairment
CAREY A MATSUBA
Commentary on Williams et al.9. Is autism curable?
SVEN BÖLTE
Review10. Social-communicative abilities as treatment goals for preschool children with autism spectrum disorder: the importance of imitation, joint attention, and play
PETRA WARREYN, SARA VAN DER PAELT, HERBERT ROEYERS
Review11. Association between impairment, function, and daily life task management in children and adolescents with autism
YING-CHIA KAO, JESSICA M KRAMER, KENDRA LILJENQUIST, WENDY J COSTER
Original Article
Virtual Issue Collection: Paediatric Stroke
As official journal of the British Paediatric Neurology Association (BPNA), DMCN is proud to present this Virtual Issue on paediatric stroke, a subject of particular importance to BPNA members and paediatric neurologists worldwide. Whilst – or perhaps because – stroke outside the neonatal period is relatively rare (around 1.6 per 100 000 children per year), each case presents challenges for optimal management in the face of a dearth of evidence, in contrast to the situation in adults. This Virtual Issue shows that DMCN has been attempting to redress this balance – just in the last year we had 11 articles (including reviews, original papers, commentaries, and a case report) covering paediatric stroke. All articles in this Virtual Issue are freely available and have been specially selected. Regarding aetiology, Lingappa et al. (commentary by DeVeber) discuss mineralizing angiopathy as a relatively common cause of basal ganglia stroke after minor trauma in infants. Continuing on the theme of subcortical stroke, Kharoshankaya et al. describe global EEG suppression secondary to a unilateral perinatal thalamic stroke.
Management of stroke is rife with challenges, whether considering early intervention after perinatal stroke or the many barriers to hyperacute treatments in children with acute arterial ischaemic stroke, as in the paper by Marecos et al. (commentary by Jordan). Moving away from acute issues, constraint-induced movement therapy has been shown to benefit upper limb function in children with hemiplegia; but could the effects be enhanced through non-invasive brain stimulation? A pilot clinical trial by Gillick et al. (commentary by Hoare) suggests this could be the case. Another important factor which affects outcome is mastery motivation, demystified by Miller et al. Finally, Gordon surveyed the literature on outcome measures after childhood stroke, reminding us to consider the child’s perspective and look beyond effects on body structure and function alone.
- Anna P Basu
Virtual Issue Articles:
Mineralizing angiopathy with infantile basal ganglia stroke after minor trauma
LOKESH LINGAPPA, RAVI DANDU VARMA, SIRISHARANI SIDDAIAHGARI, RAMESH KONANKI
Original ArticleStroke in infancy: a convergence of causes
GABRIELLE DEVEBER
Commentary on Lingappa et al.Global suppression of electrocortical activity in unilateral perinatal thalamic stroke
LIUDMILA KHAROSHANKAYA, PETER M FILAN, CONOR O BOGUE, DEIRDRE M MURRAY, GERALDINE B BOYLAN
Case ReportEarly intervention after perinatal stroke: opportunities and challenges
ANNA P BASU
Invited ReviewAre children with acute ischaemic stroke eligible for hyperacute thrombolysis? A retrospective audit from a tertiary UK centre
CLARA MARECOS, ROXANA GUNNY, ROBERT ROBINSON, VIJEYA GANESAN
Original ArticleThrombolytics for acute stroke in children: eligibility, practice variability, and pediatric stroke centers
LORI C JORDAN
Commentary on Marecos et al.Primed low-frequency repetitive transcranial magnetic stimulation and constraint-induced movement therapy in pediatric hemiparesis: a randomized controlled trial
BERNADETTE T GILLICK, LINDA E KRACH, TIM FEYMA, TONYA L RICH, KELLI MOBERG, WILLIAM THOMAS, JESSICA M CASSIDY, JEREMIAH MENK, JAMES R CAREY
Original Article, Editor’s ChoicePutting some excitement into constraint-induced movement therapy
BRIAN HOARE
Commentary on Gillick et al.Mastery motivation in children with congenital hemiplegia: individual and environmental associations
LAURA MILLER, JENNY ZIVIANI, ROBERT S WARE, ROSLYN N BOYD
Original ArticleMastery motivation as a predictor of occupational performance following upper limb intervention for school-aged children with congenital hemiplegia LAURA MILLER, JENNY ZIVIANI, ROBERT S WARE, ROSLYN N BOYD
Original ArticleFunctioning and disability after stroke in children: using the ICF-CY to classify health outcome and inform future clinical research priorities
ANNE L GORDON
Review
Virtual Issue Collection: Orthopaedic Interventions in Cerebral Palsy – in celebration of the contribution of Mark Paterson
This Virtual Issue of Developmental Medicine and Child Neurology celebrates the contribution of Mark Paterson to the journal and to the wider activities of Mac Keith Press. Mark was a well-known children’s orthopaedic surgeon in the UK who died in October 2013, aged 59 years. Obituaries written by orthopaedic colleagues describe his life and various activities in the practice, education, and training of paediatric orthopaedics.1,2
I came to know Mark through our work together on the Editorial Board of Mac Keith Press for over a decade, and found his warm, wise, and modest collegiality – and his sense of fun – to be highly engaging. DMCN seeks to publish research which produces findings that are valid and clinically relevant. Mark was one of my ‘go-to’ people in my role as an editor when handling orthopaedic papers. He had the ability to not only appraise the science and interpret whether the findings might be useful, but also considered how international variation in the practice of orthopaedics might influence the approach taken and key messages.
The Editors and Mac Keith Press staff have brought together these and other papers previously published in DMCN on the theme of Orthopaedic Interventions in Cerebral Palsy. We cannot know what Mark would have thought of these particular papers, although he reviewed some of them and that they were published suggests he thought there were useful messages that merited dissemination. Personally, I suspect he would have readily seen the strengths and utility of some, and might have questioned critically aspects of others. Two contributions from Mark himself are included at the beginning of the issue, and I think these reflect his thoughtful, critical, and constructive approach. If they stimulate debate and personal reflections about the management of cerebral palsy, and promote research, then I believe he would be pleased that Mac Keith Press was serving its purpose successfully.
-Christopher Morris
REFERENCES
1. Robb J. Obituary. Mr Mark Paterson FRCS. EPOS (European Paediatric Orthopaedic Society).www.epos.org/wp-content/uploads/2013/11/Sin-tÃtulo-1.pdf
2. Scott G. Obituary. John Mark Paterson (1954 to 2013). Bone Joint J 2013; 95: 1726. www.bjj.boneandjoint.org.uk/content/95-B/12/1726.extract#VIRTUAL ISSUE ARTICLES:
The Identification and Treatment of Gait Problems in Cerebral Palsy
J MARK H PATERSON
Book ReviewVarus and valgus deformities of the foot in cerebral palsy
GEORGE C. BENNET, MERCER RANG AND DEREK JONES
Original ArticleVarus and valgus deformities of the foot in cerebral palsy
MARK PATERSON
Commentary on Bennet et al.Reported outcomes of lower limb orthopaedic surgery in children and adolescents with cerebral palsy: a mapping review
NICHOLA C WILSON, JIMMY CHONG, ANNA H MACKEY AND NGAIRE S STOTT
ReviewEffectiveness of hand splints in children with cerebral palsy: a systematic review with meta-analysis
MICHELLE JACKMAN, IONA NOVAK AND NATASHA LANNIN
ReviewEfficacy of botulinum toxin A in children with cerebral palsy in Gross Motor Function Classification System levels IV and V: a systematic review
TAMIS W PIN, JESSICA ELMASRY, JENNY LEWIS
ReviewStability of the Gross Motor Function Classification System after single-event multilevel surgery in cerebral palsy
ERICH RUTZ, OREN TIROSH, PAM THOMASON, ALEXJ BARG, H KERR GRAHAM
Original ArticleStability of the Gross Motor Function Classification System after single-event multilevel surgery in children with cerebral palsy
ANNA MCCORMICK
Commentary on Rutz et al.The natural history of hip development in cerebral palsy
TERJE TERJESEN
Original ArticleAre hips stable in children with cerebral palsy?
ERICH RUTZ
Commentary on TerjesenProphylactic femoral varization osteotomy for contralateral stable hips in non-ambulant individuals with cerebral palsy undergoing hip surgery: decision analysis
MOON SEOK PARK, CHIN YOUB CHUNG, DAE GYU KWON, KI HYUK SUNG, IN HO CHOI, KYOUNG MIN LEE
Original ArticleTo do or not to do the other hip?
UNNI G NARAYANAN
Commentary on Park et al.Single-event multilevel surgery for children with cerebral palsy: a systematic review
JENNIFER L MCGINLEY, FIONA DOBSON, REKHA GANESHALINGHAM, BENJAMIN J SHORE, ERICH RUTZ, H KERR GRAHAM
ReviewThe influence of age at single-event multilevel surgery on outcome in children with cerebral palsy who walk with flexed knee gait
MARTIN ŠVEHLÍK, GERHARD STEINWENDER, TANJA KRAUS, VINAY SARAPH, THOMAS LEHMANN, WOLFGANG E LINHART, ERNEST B ZWICK
Original ArticleThe influence of age on timing of single-event multilevel surgery: are adolescents with cerebral palsy comparable to a younger cohort?
SCOTT HOFFINGER
Commentary on Švehlík et al.Adverse events and health status following botulinum toxin type A injections in children with cerebral palsy
STEPHEN J O’FLAHERTY, VYSHNAVI JANAKAN, ANGELA M MORROW, ADAM M SCHEINBERG, MARY-CLARE A WAUGH
Original ArticleA classification system for hip disease in cerebral palsy
JONATHAN ROBIN, H KERR GRAHAM, RICHARD BAKER, PAULO SELBER, PAM SIMPSON, SEAN SYMONS, PAM THOMASON
Original ArticleA classification for hip disease in cerebral palsy
HENRY G CHAMBERS
Commentary on Robin et al
Virtual Issue Collection: Selective Dorsal Rhizotomy
Welcome to Developmental Medicine & Child Neurology’s Virtual Issue on Selective Dorsal RhizotomySelective dorsal rhizotomy (SDR) is a neurosurgical procedure which aims to reduce spasticity mainly in children diagnosed with bilateral spastic cerebral palsy (CP). Although it has been performed for more than three decades, its long-term efficacy remains a matter of debate. We present a selection of important studies examining short- and long-term outcomes together with critical appraisal of the level of current knowledge derived from studies in the field.
The first of two systematic reviews by Grunt et al. highlights the challenges of performing long-term controlled studies in this area. These authors found that there is moderate evidence that SDR has a positive influence on the International Classification of Function, Disability and Health (ICF) 10 ‘body structure and function’ domain but found no evidence that SDR positively influences the ICF ‘activity and participation’ domain in the long term.
In the second systematic review Grunt et al. provide an overview of selection criteria for SDR. Although certain selection criteria for surgery have long been recognized as being desirable to optimize outcome, this paper reveals a lack of uniformity in SDR selection procedures around the world. The authors recommend an international consensus for standardized SDR selection procedures in low- and high-income countries.
Four studies present short- and longer-term outcomes in modestly sized groups of children with CP of varying ages groups and levels of motor impairment. These are accompanied by commentaries by Steinbok, McLaughlin and Baker and Graham that provide insights into the context and interpretation of the studies.
Two studies (Bolster et al. and Lunquist et al.) of children undergoing surgery before the age of 6 found some evidence of improvement in motor function at 10 years as assessed by the 66-item Gross Motor Function Measure.
Tedroff et al. also looked at children undergoing surgery at a mean age of 6 years and found an initial improvement followed by a decline over 10 years. The results need to be interpreted in the light of the number of confounders which impact on the mobility of children as they get older.
MacWilliams et al. found less favourable outcomes in a group of adolescents undergoing surgery at age 15 and cast doubt on the advisability of this procedure in later childhood and adolescence.
Selection criteria for selective dorsal rhizotomy in children with spastic cerebral palsy: a systematic review of the literature
SEBASTIAN GRUNT, A GRAHAM FIEGGEN, R JEROEN VERMUELEN, JULES G BECHER, NELLEKE G LANGERAK, (2014), Review
Information regarding the selection procedure for selective dorsal rhizotomy (SDR) in children with spastic cerebral palsy (CP) is scarce. Therefore, the aim of this study was to summarize the selection criteria for SDR in children with spastic CP.
Long-term effect of selective dorsal rhizotomy on gross motor function in ambulant children with spastic bilateral cerebral palsy, compared with reference centiles
ELINE AM BOLSTER, PETRA EM VAN SCHIE, JULES G BECHER, WILLEM JR VAN OUWERKERK, ROB LM STRIJERS, R JEROEN VERMUELEN, (2013), Original Article
The aim of this study was to evaluate the long-term effect of selective dorsal rhizotomy (SDR) on the gross motor function of ambulant children with spastic bilateral cerebral palsy (CP), compared with reference centiles.Long-term effect of selective dorsal rhizotomy
PAUL STEINBOK, (2013), Commentary on Bolster et al.This commentary is on the original article by Bolster et al. on pages 610–616 of this issue.
Motor function after selective dorsal rhizotomy: a 10-year practice-based follow-up study
ANNIKA LUNDKVIST JOSENBY, PHILIPPE WAGNER, GUN-BRITT JARNLO, LENA WESTBOM, EVA NORDMARK, (2012), Original Article
The aim of this study was to explore changes in motor function up to 10 years after selective dorsal rhizotomy (SDR).
Motor function after dorsal rhizotomy
JOHN MCLAUGHLIN, (2012), Commentary on Josenby et al.
This commentary is on the original article by Josenby et al. on pages 429-435 of this issue
Functional decline in children undergoing selective dorsal rhizotomy after age 10
BRUCE A MACWILLIAMS, BARBARA A JOHNSON, AMY L SHUCKRA, JACQUES L D’ASTOUS, (2011), Original Article
To compare function and gait in a group of children older than most children who received selective dorsal rhizotomy (SDR) with age- and function-matched peers who received either orthopedic surgery or no surgical intervention.
Functional decline in children undergoing selective dorsal rhizotomy after age 10
RICHARD BAKER, KERR GRAHAM, (2011), Commentary on MacWilliams et al.
This commentary is on the original article by MacWilliams et al. To view this paper visit http://dx.doi.org/10.1111/j.1469-8749.2011.04010.x.
Does loss of spasticity matter? A 10-year follow-up after selective dorsal rhizotomy in cerebal palsy
KRISTINA TEDROFF, KRISTINA LÖWING, DAN N O JACOBSON, EVA ÅSTRÖM, (2011), Original Article
The aim of this study was to evaluate the long-term effects of selective dorsal rhizotomy (SDR) in children with cerebral palsy (CP).
10-year follow-up after selective dorsal rhizotomy in cerebral palsy
PAUL STEINBOK, (2011), Commentary on Tedroff et al.
This commentary is on the original article by Tedroff et al. To view this paper visit http://dx.doi.org/10.1111/j.1469-8749.2011.03969.x.
Long-term outcome and adverse effects of selective dorsal rhizotomy in children with cerebral palsy: a systematic review
SEBASTIAN GRUNT, JULES G BECHER, R JEROEN VERMEULEN, (2011), Review
To assess the long-term outcome and adverse events of selective dorsal rhizotomy (SDR) in children with spastic cerebral palsy (CP).
Welcome to Developmental Medicine & Child Neurology’s Virtual Issue on Hippotherapy and Therapeutic Horse Riding
All articles and commentaries are freely available and have been specially selected by the editors.
Sports therapies have an increasingly prominent place in providing enjoyment and participation for people with neurological and developmental disorders. Horseback riding is particularly popular and addition to its appeal as a fun activity in which horse and rider establish a close relationship, it has the ability to engage people with a wide range of physical difficulties (e.g. cerebral palsy with Gross Motor Function Classification System levels I–V) and social/communication and cognitive difficulties (e.g. autism and intellectual disability).
Hippotherapy (from the Greek hippos [horse]) is a form of physical therapy in which a licensed therapist uses the characteristic movements of a horse as a therapeutic intervention or tool. Therapeutic horse riding (where specific horse riding skills are taught) is conducted by non-therapist riding instructors and assistants who select target objectives based on the person’s individual physical and social needs.
There is some research evidence of observable benefits in terms of motor ability, balance, and postural adjustment. A limited number of studies have been carried out and many have the drawback of small numbers and lack of a control group. Some advocate the use of single-subject design. Conclusions about functional gains have often been somewhat tentative but there is sufficient interest in the discipline to examine the evidence and encourage further systematic study.
We present five articles on the subject including two review articles (one a meta-analysis) which illustrate the existing levels of evidence and also the challenges involved in conducting studies in the field.
Effects of hippotherapy and therapeutic horseback riding on postural control or balance in children with cerebral palsy: a meta-analysis
MONIKA ZADNIKAR, ANDREJ KASTRIN, 2011
The eight studies examined, found that postural control and balance were improved during hippotherapy and THR. Although the generalization of our findings may be restricted by the relatively small sample size, the results clearly demonstrate that riding therapy is indicated to improve postural control and balance in children with Cerebral Palsy.
A randomized controlled trial of therapeutic horse riding on the quality of life, health, and function of children with cerebral palsy
E DAVIS, B DAVIES, R WOLFE, R RAADSVELD, B HEINE, P THOMASON, FIONA DOBSON, H KERR GRAHAM, 2009
This randomized controlled trial examined whether therapeutic horse riding has a clinically significant impact on the physical function, health and quality of life (QoL) of children with cerebral palsy (CP). Ninety-nine children aged 4 to 12 years with no prior horse riding experience and various levels of impairment were randomized to intervention or control. Pre- and post-measures were completed by 72 families (35 intervention and 37 control). Children’s gross motor function, health status, and QoL were assessed by parents and QoL was assessed by children before and after the 10-week study period. Upon analysis, this study suggests that therapeutic horse riding does not have a clinically significant impact on children with CP.
Does horseback riding therapy or therapist-directed hippotherapy rehabilitate children with cerebral palsy?
JOHN A STERBA, 2007
For this report, quantitative studies were sought investigating whether horseback riding used as therapy improves gross motor function in children with cerebral palsy (CP). Eleven published studies on instructor-directed, recreational horseback riding therapy (HBRT) and licensed therapist-directed hippotherapy were identified, reviewed, and summarized for research design, methodological quality, therapy regimen, internal/external validity, results, and authors’ conclusions.
Horseback riding in children with cerebral palsy: effect on gross motor function
JOHN A STERBA, BRIAN T ROGERS, AMY P FRANCE, DEBORAH A VOKES, 2002
The effects of recreational horseback riding therapy (HBRT) on gross motor function in children with cerebral palsy (CP: spastic diplegia, spastic quadriplegia, and spastic hemiplegia) were determined in a blinded study using the Gross Motor Function Measure (GMFM). After an 18 week study with 17 participants, the findings suggest that HBRT may improve gross motor function in children with CP, which may reduce the degree of motor disability. Larger studies are needed to investigate this further, especially in children.with more severe disabilities. Horseback riding should be considered for sports therapy in children with CP.
Effect of an equine-movement therapy program on gait, energy expenditure, and motor function in children with spastic cerebral palsy: a pilot study
NANCY H MCGIBBON, CARLA-KRYSTIN ANDRADE, GAIL WIDENER, HOLLY LEA CINTAS, 1998
The purpose of this study was to evaluate the effects of an 8-week program of hippotherapy on energy expenditure during walking; on the gait dimensions of stride length, velocity, and cadence: and on performance on the Gross Motor Function Measure (GNIFM) in five children with spastic cerebral palsy (CP). The study indicated a trend toward increased stride length and decreased cadence was observed. This study suggests that hippotherapy may improve energy expenditure during walking and gross motor function in children with CP.
Welcome to Developmental Medicine & Child Neurology's Virtual Issue on Epilepsy.
All articles (and linked) commentaries are freely available and have been specially selected by the editors.
The Virtual Issue contains relevant and contemporary papers on ‘Epilepsy’ published in Developmental Medince & Child Neurology. Epilepsy is the most common, serious neurological condition, affecting around 50 million people worldwide. There are over 40 different types of epilepsy consisting of at least 29 syndromes and a further 12 or so clinically distinct groups defined by the specific or underlying cause. There are at least 40 different seizure types and individuals may have one or several different variations. Many individuals with epilepsy also suffer from difficulties with intellectual function, behavior, and social communication.
These papers highlight some important current research into aetiology (genetic metabolic conditions) and the complex relationship between epilepsy, cognition, behavior, and school achievement. An article on epilepsy in developing countries examines outcomes in limited-resource situations; at the other end of the spectrum two articles evaluate the outcome of evolving ‘state of the art’ interventions, epilepsy surgery, and vagus nerve stimulation.
Inborn errors of metabolism causing epilepsy
Shamima Rahman, Emma J. Footitt, Sophia Varadakar, Peter T. Clayton, (2012), ReviewLong-term outcome in pyridoxine-dependent epilepsy
Levinus A. Bok, Feico J. Halbertsma, Saskia Houterman, Ron A. Wevers, Charlotte Vreeswijk, Cornelis Jakobs, Eduard Struys, Johan H. Van der Hoeven, Deborah A. Sival, Michel A. Willemsen, (2012), Original ArticleThe impact of methylphenidate on seizure frequency and severity in children with attention-deficit-hyperactivity disorder and difficult-to-treat epilepsies
Kleber Santos, Andre Palmini, Ana L. Radziuk, Rosana Rotert, Fernanda Bastos, Linda Booij, Brisa S. Fernandes, (2013), Original ArticleAdaptive behavior and later school achievement in children with early-onset epilepsy
Anne T. Berg, Rochelle Caplan, Christine B. Baca, Barbara G. Vickrey (2013), Original ArticleUnderstanding relationships between autism, intelligence, and epilepsy: a cross-disorder approach
Agnes M. Van Eeghen, Margaret B. Pulsifer, Vanessa L. Merker, Ann M. Neumeyer, Elmer E. Van Eeghen, Ronald L. Thibert, Andrew J. Cole, Fawn A. Leigh, Scott R. Plotkin, Elizabeth A. Thiele, (2012), Original ArticlePrediction of seizure outcome in childhood epilepsies in countries with limited resources: a prospective study
Selina H. Banu, Naila Z. Khan, Mahmuda Hossain, Saadia Ferdousi, Stewart Boyd, Rod C. Scott, Brian Neville, (2012), Original ArticleSeizure outcome after extratemporal epilepsy surgery in childhood
Luigi D’Argenzio, M. Chiara Colonelli, Sue Harrison, Thomas S. Jacques, William Harkness, Rod C. Scott, J. Helen Cross, (2012), Original ArticleVagus nerve stimulation in children with intractable epilepsy: a randomized controlled trial
Sylvia Klinkenberg, Marlien W. Aalbers, Johan S. H. Vles, Erwin M. J. Cornips, Kim Rijkers, Loes Leenen, Fons G. H. Kessels, Albert P. Aldenkamp, Marian Majoie, (2012), Original Article
Welcome to Developmental Medicine & Child Neurology’s Virtual Issue on Autism
All articles and commentaries are freely available and have been specially selected by the editors.
The Virtual Issue includes relevant and contemporary papers on ‘Autism’ published in Developmental Medicine & Child Neurology. Autism spectrum disorders affect around one in one-hundred children and are characterized by lifelong impairments in social behaviour, communication, and cognitive function.
DMCN presents papers which offer new insights into aetiology (including genetic and environmental factors), cognition, behaviour, and morbidity. There are also articles which evaluate some promising new interventions: behavioural therapy, melatonin, and neurofeedback.
Genetic causes of syndromic and non-syndromic autism.
AHMET O CAGLAYAN, (2010), ReviewA potential explanation of some established major risk factors for autism.
WILLIAM H JAMES, (2012), ReviewScreening for autism in extremely preterm infants: problems in interpretation.
TAMANNA MOORE, SAMANTHA JOHNSON, ENID HENNESSY, NEIL MARLOW, (2012), Original ArticleLessons and opportunities from autism screening in high-risk children.
PAUL H LIPKIN, (2012), Commentary on Moore et al.Imaging evidence for disturbances in multiple learning and memory systems in persons with autism spectrum disorders.
SUZANNE GOH, BRADLEY S PETERSON, (2012), ReviewA neural systems approach in autism spectrum disorders.
PARAMALA J SANTOSH, (2012), Commentary on Goh et al.A systematic review of two outcomes in autism spectrum disorder – epilepsy and mortality.
SUE WOOLFENDEN, VANESSA SARKOZY, GRETA RIDLEY, MICHAEL COORY, KATRINA WILLIAMS, (2012), Systematic ReviewMinor neurological dysfunction in children with autism spectrum disorder.
MARIANNE DE JONG, MARJA PUNT, ERIK DE GROOT, RUUD B MINDERAA, MIJNA HADDERS-ALGRA, (2011), Original ArticleStability of motor problems in young children with or at risk of autism spectrum disorders, ADHD, and or developmental coordination disorder.
HILDE VAN WAELVELDE, ANN OOSTRA, GRIET DEWITTE, CHRISTINE VAN DEN BROECK, MARIAN J JONGMANS, (2010), Original ArticleIs motor dysfunction core to autism spectrum disorder?
NICOLE RINEHART, JENNIFER McGINLEY, (2010), Commentary on Van Waelvelde et al.Social communication difficulties and autism spectrum disorder in young children with optic nerve hypoplasia and/or septo-optic dysplasia.
JEREMY R PARR, NAOMI J DALE, LARA M SHAFFER, ALISON T SALT, (2010), Original ArticleAutism spectrum disorder in visually impaired young children.
ULLA EK, (2010), Commentary on Parr et al.Developing a schedule to identify social communication difficulties and autism spectrum disorder in young children with visual impairment.
MICHAEL ABSOUD, JEREMY R PARR, ALISON SALT, NAOMI DALE, (2011), Clinical LetterBehavioural intervention practices for stereotypic and repetitive behaviour in individuals with autism spectrum disorder: a systematic review. STEPHANIE Y PATTERSON, VERONICA SMITH, MICHAELA JELEN, (2010), Systematic Review
Melatonin in autism spectrum disorders: a systematic review and meta-analysis.
DANIEL A ROSSIGNOL, RICHARD E FRYE, (2011), ReviewMeta-analysing the effectiveness of melatonin for sleep-disturbed individuals with autism spectrum conditions: should Rett syndrome be included? FABIAN GUÉNOLÉ, JEAN-MARC BALEYTE, (2011), Letter to the Editor
Neurofeedback in autism spectrum disorders.
MARTIN HOLTMANN, SABINA STEINER, SARAH HOHMANN, LUISE POUSTKA, TOBIAS BANASCHEWSKI, SVEN BÖLTE, (2011), Invited Review
Welcome to Developmental Medicine & Child Neurology’s “Evaluating Interventions in Cerebral Palsy” Virtual Issue
All articles in this virtual issue are freely available and have been specially selected by the editors. It includes relevant and contemporary papers on “Evaluating Interventions in Cerebral Palsy”, published on Developmental Medicine & Child Neurology.
Cerebral palsy (CP) is the most common cause of physical disability in children and around 90% of children born with CP survive into adulthood. Various therapeutic approaches aim to meet the challenge of improving function and quality of life in individuals with CP. DMCN presents several recent papers which evaluate some recently developed interventions and contribute evidence to inform current and future practice.
An internet-based physical activity intervention for adolescents with cerebral palsy: a randomized controlled trial
CAROL A MAHER, MARIE T WILLIAMS, TIM OLDS, et al., (2010)To constrain or not to constrain, and other stories of intensive upper extremity training for children with unilateral cerebral palsy
ANDREW M GORDON, (2011)Effects of a supported speed treadmill training exercise program on impairment and function for children with cerebral palsy
THERESE E JOHNSTON, KYLE E WATSON, SANDY A ROSS, et al., (2011)Effects of a home-based treadmill training exercise program on impairment and function.
SHERYL LOW, (2011)The effectiveness of task-oriented intervention and trunk restraint on upper limb movement quality in children with cerebral palsy
SHEILA SCHNEIBERG, PATRICIA A MCKINLEY, HEIDI SVEISTRUP, et al., (2010)Context therapy: a new intervention approach for children with cerebral palsy
JOHANNA DARRAH, MARY C LAW, NANCY POLLOCK, et al.,(2011)Instead of certainty we have research …
EVA BROGREN CARLBERG, (2011)Modified constraint-induced therapy for children with hemiplegic cerebral palsy: a randomized trial
MARGARET WALLEN, JENNY ZIVIANI, OLIVIA NAYLOR, et al., (2011)Randomised Trial of contstraint-induced movement therapy and bimanual training on activity outcomes for children with congenital hemiplegia.
LEANNE SAKZEWSKI, JENNY ZIVIANI, DAVID F ABBOTT, et al. (2011)Is it time to remove the restraints?
ANDREW M GORDON, (2011)Immediate effect of a wrist and thumb brace on bimanual activities in children with hemiplegic cerebral palsy.
ANNOEK LOUWERS, ANKE MEESTER-DELVER, KATINKA FOLMER, (2011)Bracing and splinting interventions in the upper limbs of people with cerebral palsy.
CHRISTINE IMMS, (2011)Functional taping: a promising technique for children with cerebral palsy.
Marco Iosa, Daniela Morelli, Maria Vittoria Nanni, et al. (2009)
Welcome to Developmental Medicine & Child Neurology's Virtual Issue of Editor's Choice articles from May 2012 to April 2013.
This Virtual Issue includes all the papers that have been chosen by Editor-in-Chief, Dr. Peter Baxter in the last year. These papers range widely, from autism spectrum disorder to sudden unexpected death in epilepsy, and are selected by the editor in each issue of DMCN to be of special interest or importance.
Most of these papers have attached commentaries. Many of them have also been the subject of podcasts by Dr. Baxter and assembled experts in the field (available for free on the DMCN website).
Impact of intensive upper limb rehabilitation on quality of life: a randomized trial in children with unilateral cerebral palsy
Leanne Sakzewski, Stacey Carlon, Nora Shields, Jenny Ziviani, Robert S. Ware, Roslyn N. Boyd, (2012), Original ArticleThe structure of savant calendrical knowledge
Lisa Heavey, Beate Hermelin, Laura Crane, Linda Pring, (2012), Original ArticleRisk and causes of death in children with a seizure disorder
Victoria Nesbitt, Martin Kirkpatrick, Gale Pearson, Allan Colver, Rob Forsyth, (2012), Original ArticleNew insights into the pathology of white matter tracts in cerebral palsy from diffusion magnetic resonance imagin: a systematic review
Simon M. Scheck, Roslyn N. Boyd, Stephen E. Rose, (2012), ReviewSeizure outcome after extratemporal epilepsy surgery in childhood
Luigi D'Argenzio, M. Chiara Colonnelli, Sue Harrison, Thomas S. Jacques, William Harkness, Rod C. Scott, J. Helen Cross, (2012), Original ArticleThe association of cerebral palsy with birth asphyxia: a definitional quagmire
Jonas H. Ellenberg, Karin B. Nelson, (2012), ReviewRecognizable phenotypes associated with intracranial calcification
John H. Livingston, Stavros Stivaros, Marjo S. van der Knaap, Yanick J. Crow, (2012), Original ArticleChronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy
Wilma M.A. van der Slot, Channah Nieuwenhuijsen, Rita J.G. van den Berg-Emons, Michael P. Bergen, Sander R. Hilberink, Henk J. Stam, Marij E. Roebroeck, (2012), Original ArticleBehaviour in children with neurofibromatosis type 1: cognition, executive function, attention, emotion, and social competence
Annuka Lehtonen, Emma Howie, Dorothy Trump, Susan M. Huson, (2012), Systematic ReviewThe natural history of hip development in cerebral palsy
Terje Terjesen, (2012), Original ArticlePrevalence and risk factors for neurological disorders in children aged 6 months to 2 years in northern India
Rashmi Kumar, Anupama Bhave, Roli Bhargava, Girdhar G. Agarwal, (2013), Original ArticleGeneric patient-reported outcomes in child health research: a review of conceptual content using World Health Organization definitions
Nora Fayed, Olaf Kraus de Camargo, Elizabeth Kerr, Peter Rosenbaum, Ankita Dubey, Cristina Bostan, Markus Faulhaber, Parminder Raina, Alarcos Cieza, (2012), Review
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