Transition of children with epilepsies to adult care

Authors


Correspondence

Mr A Baheerathan, BSc (Hons), Department of Pediatric Neurology, Leicester Royal Infirmary, University hospitals of Leicester National Health service trust, Leicester LE1 5WW, UK.

Tel: 07944199545 |

Fax: 0044-116-258 |

Email: ab379@le.ac.uk

Abstract

Young people aged between 10 and 20 years will account for nearly 23% of the UK's total population by the end of 2012. This fact, coupled with an increasing number of children with chronic illness surviving into adulthood, means that the transition of children with chronic illness into adult care is becoming an increasingly important issue. Epilepsies are pervasive disorders that consist not only of recurrent epileptic seizures that can change over time, but also of evolving behavioural, academic and social difficulties. Many of these young individuals feel ‘dumped’ or ‘left in the dark’ once they are ‘transferred’ to adult care.

Conclusion

Therefore, it is essential to acknowledge that ‘transition of care’ in children with epilepsies is not a ‘step’ but a ‘process’. It is a very challenging time with increased stress and anxiety, for both the individual and their families. This article will discuss the various factors associated with the complex topic and aim to establish a framework for the successful transition of children with epilepsy into adult care.

Introduction

Young people aged between 10 and 20 years will account for nearly 23% of the UK's total population by the end of 2012. This fact, coupled with an increasing number of children with chronic illness surviving into adulthood, means that the transition of children with chronic illness into adult care is becoming an increasingly important issue [1]. This period can be difficult for both patients and their families and whilst, the barriers to making this transition have been identified in the literature, very little pertains to epilepsy.

Epilepsies are pervasive disorders that consist not only of recurrent epileptic seizures that can change over time, but also of evolving behavioural, academic and social difficulties [2]. Therefore, it is essential to acknowledge that ‘transition of care’ in children with epilepsies is not a ‘step’ but a ‘process’. It is a very challenging time with increased stress and anxiety, for both the individual and their families.

It should also be remembered that multiple changes are occurring at this time in a young person's life, as he or she is learning self-empowerment and independence. There are changes in education, leaving school, or college and starting employment, increases in the amount and complexity of social activities, driving, building new relationships and all the physiological changes of the body and psychological changes in the maturing mind to contend with. Moreover, the expectations on young people in terms of responsibility and ownership of their own long-term condition are very different in adult services compared with paediatric services. Paediatric services are family focussed, where as adult care is focussed on the individual. As a child, parents and carers are involved in making sure that concordance with treatment plans (compliance, adherence) is maintained and appropriate lifestyle choices are adopted. Paediatricians and paediatric nurses and teachers are familiar with the risk-taking behaviours and sense of omnipotence fluctuating with despair often seen. As an adult, one makes his or her own choices. Therefore, if the consequences of poor concordance and lifestyle are not clearly understood by the individual, serious consequences can occur.

If transition has to be viewed as a ‘process’, then it needs to be initiated in the paediatric setting. It takes time and a structured plan to achieve the effective transition of a young person with epilepsy into adult care. Transition of children with intellectual disabilities (learning difficulties, mental retardation) will have to be different from those with normal intelligence. Therefore, although a standardized protocol can be produced, it should also incorporate some of the specific individual's needs. Moreover, the diagnosis of epilepsy during adolescence may need revisiting: epilepsy may deteriorate, may remit spontaneously, or may be associated with comorbid conditions like attention deficit, autism and motor disability, which can manifest in new ways during this period.

There are no standardized transition protocols in most of the epilepsy services across the UK. Many of these young individuals feel ‘dumped’ or ‘left in the dark’ once they are ‘transferred’ to adult care. They may have had a long relationship with the paediatric epilepsy service with all the appropriate multi-agency support and education opportunities in place. However, once they find themselves in the adult services, they and their families are often shocked. The expectations on them are higher, access to specialists may be more difficult, and many more challenging life situations arise, for example, driving, employment, careers, relationships. Although the majority of young people emerge from this period with a positive self-image, a strong sense of self-identity and an ability to interact positively with the society as a whole, many will not be so fortunate [3].

This article will discuss the various factors associated with the complex topic and aim to establish a framework for the successful transition of children with epilepsy into adult care.

Current Practice

Transition into adult care is fragmented and patchy. There is no consistency in practice across the country, not even across a region. The majority of children get transferred to adult physicians or neurologists. The adult services follow a principle of infrequent follow-ups at the speciality service and have a low threshold to discharge the patient back to the general practitioners. They review the patient only when a new problem has been brought to light by the young person to their GP. However, expecting a young person with epilepsy to express their concerns in time to their GP is optimistic. Some of the children get transferred to the GPs directly. This has potential drawback of the patient being deprived of specialist care and advice. The patient may need review of the need for antiepileptic medications, as their epilepsy may be going into remission, they may need timely advice with their lifestyle, contraception, pregnancy and careers.

Some of the young individuals with epilepsies remain in paediatric services longer than they ought to. Although, this may be beneficial to maintain continuity of care and support, this is not ideal. Paediatricians and paediatric neurologists are not entirely confident and experienced in dealing with adult-related issues such as contraception, driving, pregnancy and employment. They may not have the specific skills of communication that are required to deal with complex issues of adulthood. Moreover, once they are beyond 16 or 19 years of age, their acute medical admissions will have to be arranged in adult wards rather than paediatric wards. There may be exceptions to this arrangement, which should be planned on an individual basis, but all too often just seems to happen with no planning or consideration of the patient's best interests at all.

Very few hospitals have a dedicated teenage transition clinic for people with epilepsies. In one local service, as there are no transition clinics in place, most of the patients are transferred directly to adult neurologists with an interest in epilepsies. Although, they receive appropriate medical advice, they are not regularly reviewed and are subject to an abrupt change in the nature of the care they are provided. The epilepsy specialist nurse service is restricted to hospital clinics or wards only. There are no community follow-up or home visits. This sudden change in service and support is not satisfactory to most of the young people and parents who go through this process and may also coincide with a deterioration in control of the epilepsy.

Reflection on the Need for Robust Transition Services

The transition process for children with epilepsies is clearly inadequate or nonexistent in some places. The support that their family receives in the community under the adult services does not always meet their particular needs. These young individuals with epilepsies, with and without intellectual disabilities are different from the usual patients seen in adult neurological practice and can receive minimal support, as there is often no specific service available to take over their care when they leave paediatric services. Even if following transition, the support infrastructure is reduced and the follow-up appointments are few, educating the parent/carers and gradually introducing the concept of ‘ownership of one's own condition’ goes a long way in self-empowering them for the future. Each young individual, as he or she is going through the transition phase should have the benefit of transition process-driven clinical care with scope to incorporate individual needs and requirements to facilitate the process.

Why is the Transition Period Critical?

Transition to adulthood implies that change is inherent to this age period; it carries vulnerability but also the potential for growth. We must recognize that this period offers us as healthcare professions an opportunity for intervention, and thus, it is essential that we capture and maximize its potential [4]. Adolescence is a phase of life that is marked by identity formation and self-definition [5]; adolescents engage in social activities and begin to prepare for employment, relationships and driving [6, 7]. They acquire knowledge and skill to help them successfully integrate into the society. Epilepsies can have a prohibitive impact on the young person's life, including schoolwork, sports, employment and driving, and such issues often come to the fore during this period. Appropriate education, advice and support during this period will help the adolescent to negotiate these issues successfully. In a controlled study, using adolescent coping questionnaires, psychological adjustments such as self-esteem, affect and self-efficacy were measured in 16–21 year olds with epilepsies. The young individuals with epilepsies exhibited significantly more maladaptive coping than the control group, and the control group showed better problem-solving than the epilepsy group [8]. However, to minimize these differences and provide the appropriate support and timely education, an efficient and robust system of transition process and timely education needs to be organized.

The young person will benefit from understanding the concept of ‘ownership of one's condition’ and the importance of concordance during this difficult period. It is an opportunity for the patient to develop a desire for autonomy and involvement in decision-making, thus, professionals should help in preparing and empowering the young person for transition, and this be facilitated using an interservice and organizational boundaries to achieve the best outcomes [9].

What are the Barriers to the Transition of a Teenager into Adult Care?

Tuffrey et al. [10] have highlighted the following barriers that exist in relation to the transition of a young person who suffers from a chronic disease into adult care:

  1. The paediatric team is hesitant to let go of their patients as they assume adult services to be inferior.
  2. The difficulties faced by the young person in coming to terms with an adult-oriented doctor.
  3. The families concerns over the adult environment and loss of control.
  4. The adult teams are not familiar with paediatric conditions, and the multidisciplinary team approach that is utilized in paediatric care.

How Would Transition Clinics Benefit the Young Person?

The transition clinic offers an opportunity to revisit the patient's clinical history from both the paediatric and adult physician's perspective, to reconfirm and consolidate the diagnosis and to ensure a detailed handover of care, so that a structured further management plan is agreed. The teenager remains the focus of consultation with carers/parents playing a more passive role; the individual should also be given an opportunity to discuss their concerns in privacy, as they may be inhibited in the presence of their parents. The development of such a clinic would facilitate the development of autonomy and self-empowerment in the young person before they enter the world of ‘adult services’. This dedicated clinic would help to introduce new concepts and issues to the teenager, such issues encompass lifestyle factors like sleep deprivation, interaction of AED's with alcohol and recreational drugs, oral contraceptives, pregnancy, teratogenicity of AED's, driving regulations and physical risks of seizures. Such issues are extremely important and transitional clinics would allow these to be discussed in a systematic manner.

The absence of certain services in adult neurology teams can be discussed, and alternative plans can be laid out to minimize patient distress. Career options, vocational education services and realistic goals can also be discussed. The Royal College of Nursing, in their guidance to nursing staff on the topic of adolescent transition care, have highlighted a competency-based framework covering six key areas that include; self advocacy, independent healthcare behaviour, sexual health, psychosocial support, educational and vocational planning and health and lifestyle issues [9]. This provides a broad, comprehensive checklist to help professionals to discussing issues in these areas.

The process by which teenagers take ownership of their medical care should begin well before the teenage years [11]. Transition would then occur as a slow process, thus, this will prevent the teenager and their carers from feeling unsupported or neglected. Therefore, they will slowly build their relationship with the adult services team, as the switching of care occurs between the two respective teams.

Appleton et al. conducted an audit of 120 teenagers attending a transition clinic to address their specific issues and concerns. This clinic had the benefit of joint consultant supervision from the paediatric and adult neurologists. The diagnosis of epilepsy and epileptic syndrome was reviewed. It showed that 10% of patients had been wrongly diagnosed and 22% were being treated with an inappropriate antiepileptic drug [12]. This clinic was intended to form a model for other epilepsy centres around the country. However, due to various reasons, this model has not been successfully implemented across the United Kingdom.

Some models of transition clinics comprise a single or a few clinic appointments with both the adult and paediatric consultant neurologists together [13]. Clearly, the vast array of issues highlighted above cannot be adequately covered in one joint adult-paediatric consultation and even an extra-long single appointment is likely to be insufficient. An alternative approach is to provide specific adolescent or young person's epilepsy clinics that are tailored to the process of transition over a few years before care is fully handed over to adult services.

What are the Factors/Organizational Structures that Appear to Affect the Success of These Clinics?

Ideally, every centre needs to identify at least one adult epileptologist and a paediatric neurologist to participate in these transitional clinics. It should also include epilepsy specialist nurses for children and adults. Children with epilepsies and learning difficulties or those with complex health needs should have the benefit of having their community support team representation as well. These clinics should be held monthly or at least once in every 4 months, based on the size of the cohort covered. The clinics should be preferably held in the adult services to begin familiarizing the young individuals with their new services. It is essential that the environment should not be one for preschool and primary school children, and should be comfortable for young people of secondary school age [12-18], with appropriate decoration, furniture, literature and games. An adolescent outpatient department or area, shared with other specialties can work well, as a half way environment, before the patient moves on to the adult epilepsy clinic.

There should be a structured protocol to make sure that every aspect of the young persons epilepsy care is covered. This includes discussion around change and withdrawal of medications, epilepsy surgery, career opportunities, job applications, pregnancy, contraception, epilepsy genetics, prognosis, leisure activities, safety issues and supervision, sports, swimming, driving, use of alcohol and other drugs. The transition professional team has to decide on the next follow-up by the adult epilepsy service or discharge of care into primary care.

The success of these clinics depends on many factors:

  1. The professionals involved in the establishment and running of these clinics should be motivated and enthusiastic. The idea of these clinics should not be only prescription of medications but also major input into education, social integration and rehabilitation.
  2. A clear pathway needs to be established to include young individuals with treatment-resistant epilepsy requiring management into adulthood, new onset epilepsy in adolescence and poorly controlled ‘benign’ epilepsies. Children with well-controlled benign epilepsies that often remit in adolescence can be transferred directly into adult care; however, we believe that they would also benefit from the experience of being followed up in the transition or young person's clinic.
  3. This clinic gives the teenagers the opportunity to meet other young people with a similar condition and also offers them opportunities to attend informal meetings, which are usually held outside the hospital. These meetings help teenagers to discuss their concerns and apprehension with others and share their ideas. The inclusion of youth worker involvement has proved effective in this respect, but the clinic has to be relatively large for enough young people to turn up at events.
  4. Regular clinical audit and service evaluation should be undertaken to evaluate the perceptions, opinions and feelings of the young people who attend these clinics. This will provide evidence of benefit to the patient, and will identify areas for service optimization.
  5. Not all successful transition clinics have both adult and paediatric consultants in the same room, although this model has its proponents [12]. In Nottingham, the monthly evening clinic is staffed by a selection of general paediatric, neurodisability and paediatric neurology consultants together with adult and paediatric epilepsy nurses.
  6. The model of the transition clinic should be carefully structured based on the local arrangement of services [14]. This would require close dialogue between the paediatric neurologists, paediatricians, adult neurologists, adult epilepsy nurses and most importantly the local management team.
  7. In the current financial climate, any new proposal has to be shown to be cost-effective. Fortunately, improving health care for people with long-term conditions is often cost saving in the short to medium term, for example, more effective and less wasteful use of investigations and drugs, better concordance and better epilepsy control leading to fewer emergency department attendances, fewer admissions and more selective use of more expensive second- and third-line treatments.

Ultimately, the success of these services is largely dependent on the professional's commitment to the young people, the philosophy and personalities of the clinical staff and young people themselves [13].

Conclusion

The National institute for Clinical Excellence (NICE) and the Scottish Intercollegiate Guideline Network (SIGN) have published guidelines and templates for good clinical practice (NICE, 2004; SIGN, 2005). It is evident that the medical and other multidisciplinary needs of young people with epilepsies are not always met. A national audit that was funded by the Health Quality Improvement Partnership (HQIP), Epilepsy-12 aims to help improve patient outcomes by engaging relevant health professionals to systematically evaluate their practice against key recommendations of the NICE and SIGN guidelines [15]. However, transition services have not been specifically evaluated in this audit.

A structured form of transition is required for many young people with epilepsies. However, very little has been published on the evaluation of these services, and no robust evidence is available to ascertain that the outcomes of the teenagers who transit through a structured system is better compared with those who are directly transferred to adult care. The British Paediatric Association working party in 1994 in their report focussed on the inadequacy of ‘adolescent medicine’, paucity of medical services for this population and how transition of this cohort into adult care should be made [16]. For transition services to be successful and cost-effective, we need efficient leadership, successful collaboration and cross-boundary working, adequate resources, continuing acquisition of skills and knowledge and effective administration.

In summary, early and open communication is paramount between the paediatric team, adult team, the young person and their guardians. Structured and sequential planning works best for patients in transition. A robust transition programme is a key to achieving this goal. Even with careful planning, transition is a stressful time for teenagers and parents, and this has to be appreciated by both teams. With careful forward planning, ample support and appropriate collaboration between adult and paediatric teams, most patients will go through the transition process smoothly and will have a positive memory of this period that will also serve them well in adult care.

Recommendations for Practice

The NICE and SIGN guidelines for childhood epilepsies should be used to push forward the development of a quality standards for epilepsy services for young people and transition [17, 18].

Despite cost and resource pressures, the stakeholders should link with their regional primary care services and hospital paediatricians to explore the clinical and cost advantages of such services. This should stimulate more widespread establishment of transition clinics. Although, robust evidence is not available to prove the superiority of ‘transition programme’ over the ‘transfer’ system, it is widely accepted that transition services should be established in all centres.

Setting up a transition programme, should be coordinated with the active participation of staff from the adult clinic. They face the challenge of matching the level of support to the young person and family that is the feature of most of paediatric services, and the patients and families expectations. The transition programme could also involve the primary healthcare team who may be the only medical service the young person will utilize in the future.

I interviewed a number of paediatric neurologists and epilepsy nurses (both adult and paediatric) in a local tertiary teaching hospital, and all of them agreed that establishment of transition services is the way forward. However, they also highlighted the paucity of resources, staff and know-how, which can stifle such developments; despite this, they showed enthusiasm and willingness to collaborate with such an endeavour.

I have formulated a pathway, incorporating the various limitations and constraints that I could anticipate in the development of a transition service (Fig. 1). This model provides an outline of the appropriate time frames for the two-staged transition, professionals who could be involved at these stages and the issues that need to be considered at different stages. Prior to the transition clinic starting up, both the adult and paediatric teams should conduct specific planning and preparation; the paediatric team should identify the cohort of teenagers who should be preparing for transition. They should prepare systems such that all the medical information needed for hand-over is readily available, so that issues important to young people are discussed at clinic visits, gaps in their knowledge and understanding identified and addressed.

Figure 1.

Protocol for transition of young people with epilepsies into adult care.

The adult team could contribute by developing a brochure describing the epilepsy services provided for patients and carers. They need to liaise closely with the paediatric team to ensure smooth planning of the transition clinic. They should also ensure that appropriate subspeciality transition is coordinated for patients with complex needs. Both paediatric and adult teams should prospectively identify any major differences in practice and discuss these in advance with patients and families.

This pathway could be adopted as a model for a pilot project, which could be established with a view to run for 6 months. The pathway/guidelines will be audited at the end of the period by the epilepsy nurse specialist and reported to the clinical governance department and managers. Any further recommendation will be reviewed and agreed by the steering group, with a plan to conduct annual reviews of the service. Key performance indicators need to be developed to compare the outcomes. Firstly, completion of transition by the age of 16–19 years as appropriate to the individual child should be included as one of the main indicators. Secondly, patient's feelings and level of confidence in moving into adult setting needs to be assessed; this could be conducted by the development of a standardized tool/scale.

Recommendations for Research

Most studies on the nature of transition problems have been descriptive. Although these highlight the factors determining the quality of care during transition, a more extensive need exists for studies that go beyond description. Critical questions remain unanswered. These include: what kind of difficulties do young individuals face after having been transferred to adult care? Are they preventable? Are some of these difficulties primarily due to lack of knowledge of primary and secondary healthcare staff or as a result of poor education and insight into one's own condition? Can selected strategies at different level of transition be beneficial to the patient? In addition to the descriptive research, some basic research related to transition experiences, epilepsy control in this cohort and cost-effectiveness is needed. Much of the research has revolved around individual aspects of transition and long-term outcomes. Transition in teenagers with epilepsy has received relatively lower attention when compared with transition in other chronic illnesses. Exploratory research that focuses on the patient's experiences across different stages of transition will help us to design transitional care that actually meets the needs of this cohort. More importantly, in this day and age, as we begin to talk more seriously about the rationing of services, we must have better appreciation for how these [19].

Based on literature review, the following recommendations for research can be made:

  1. Explore the experiences of young people with epilepsies who have been transferred to adult care to determine those strategies in transitional care that would best meet the needs of this cohort.
  2. Develop more sensitive outcome measures to evaluate the effects of various interventions that have been applied in the transition process.
  3. Examine the cost-effectiveness and benefits of the current interventions, followed by proposed interventions to assist in identification of the most appropriate strategy for the service.
  4. All transition services should participate in outcomes-based research and evaluation. Evidence is needed to justify the development and sustainability of services, supports and resources.

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