Short report: Care for children and adolescents with diabetes in Australia and New Zealand: Have we achieved the defined goals?

Authors

  • Fergus Cameron,

    1. Department of Endocrinology and Diabetes, Royal Children's Hospital, University of Melbourne, Murdoch Children's Research Institute Parkville, Melbourne, Victoria, Australia
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  • Andrew Cotterill,

    1. Department of Paediatric Endocrinology, Mater Children's Hospital, Brisbane, Queensland, Australia
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  • Jennifer Couper,

    1. Department of Diabetes and Endocrinology, Women's and Children's Hospital and Discipline of Paediatrics, University of Adelaide, Adelaide, South Australia, Australia
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  • Maria Craig,

    1. The Children's Hospital at Westmead, Sydney, New South Wales, Australia
    2. Discipline of Paediatrics and Child Health, The University of Sydney, Sydney, New South Wales, Australia
    3. School of Women's and Children's Health,, University of New South Wales, Sydney, New South Wales, Australia
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  • Elizabeth Davis,

    1. Department of Endocrinology and Diabetes, Princess Margaret Hospital for Children, Perth, Western Australia, Australia
    2. Centre for Child Health Research, University of Western Australia, Telethon Institute for Child Health Research, Perth, Western Australia, Australia
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  • Kim Donaghue,

    1. The Children's Hospital at Westmead, Sydney, New South Wales, Australia
    2. Discipline of Paediatrics and Child Health, The University of Sydney, Sydney, New South Wales, Australia
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  • Timothy Jones,

    Corresponding author
    1. Centre for Child Health Research, University of Western Australia, Telethon Institute for Child Health Research, Perth, Western Australia, Australia
    • Department of Endocrinology and Diabetes, Princess Margaret Hospital for Children, Perth, Western Australia, Australia
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  • Bruce King,

    1. School of Medicine, Faculty of Health, University of Newcastle, Newcastle, New South Wales, Australia
    2. Department of Paediatric Endocrinology, John Hunter Children's Hospital, Newcastle, New South Wales, Australia
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  • Barbara Sheil

    1. Centre for Child Health Research, University of Western Australia, Telethon Institute for Child Health Research, Perth, Western Australia, Australia
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  • Conflict of interest: There is no conflict of interest.
  • Authors: APEG Diabetes Group writing committee on behalf of the group.

Correspondence: Dr Timothy W Jones, Department of Endocrinology and Diabetes, Princess Margaret Hospital for Children, PO Box D184, Perth, WA 6840, Australia. Fax +61 8 9340 8605; email: tim.jones@health.wa.gov.au

Introduction

The landmark Diabetes Control and Complications Trial (DCCT), by demonstrating a reduction in microvascular complication rate in intensively treated adults and adolescents with type 1 diabetes (T1DM), placed responsibility on adult and paediatric diabetologists to strive to assist patients to achieve improved glycaemic control.[1, 2] The inclusion of an adolescent subgroup was important for paediatric diabetes clinicians because it confirmed that glycaemic control was the most important modifiable risk factor in complication development even in the young. In Australasia, the paediatric diabetology community responded with a call for all children and adolescents with diabetes to be treated with intensive management, with the aim of improving long-term outcomes and prognosis into adulthood.[3, 4] Furthermore, there is now an increasing body of evidence that metabolic and psychological paediatric outcomes in diabetes are strong determinants of adult outcomes.[5, 6]

In the near two decades that have followed, there has been a continued rise in the incidence of childhood onset T1DM.[7-12] At the same time, there has been a dramatic improvement in potential treatment approaches with the introduction of analogue short- and long-acting insulins, improved pump therapy and recently, new means to monitor glucose levels through continuous glucose monitoring systems.[9, 13-16] On the other hand, there has not been a consensus or initiative on the staffing resources allocated to diabetes care in children despite diabetes being endorsed as a National Health Priority Area at the Australian Health Ministers' Conference in 1996.[17]

In 2010, the Australasian Paediatric Endocrinology Group formed a national Children's Diabetes Network that represented clinical teams managing over 95% of young people with T1DM in Australia and New Zealand. Through this organisation, we have been able to assess whether the goals of the post DCCT call to universal intensive management of childhood onset diabetes have been achieved in Australia and New Zealand.

Methods

Centres

All specialised centres who manage children and adolescents (0–18 years) were invited to participate. A total of 17 centres were included (Table 1). The number of centres by Australian State was: Victoria = 2; New South Wales = 3; Queensland = 6; South Australia = 1; Western Australia = 1; Tasmania = 1; and the Australian Capital Territory = 1; two centres were included from New Zealand. A total of 7559 children and adolescents were managed by these centres and clinics. Clinic size ranged from 54 to 1620, and the 10 clinics that had 300 or more patients represented 90.6% of the patient group. The smaller clinics were located either in regional Queensland centres or in Tasmania. The majority (>90%) of children with diabetes were managed in large tertiary centres that also provided outreach services.

Table 1. Centres surveyed by state
CentreState
  1. ACT, Australian Capital Territory; NSW, New South Wales; NZ, New Zealand; QLD, Queensland; SA, South Australia; TAS, Tasmania; VIC, Victoria; WA, Western Australia.
Cairns Diabetes CentreQLD
Mackay Base HospitalQLD
Royal Children's Hospital BrisbaneQLD
Mater Children's HospitalQLD
Gold Coast HospitalQLD
Pacific Private ClinicQLD
Starship Diabetes ServiceNZ
Paediatrics, Dunedin Public HospitalNZ
CanberraACT
Royal Hobart HospitalTAS
Princess Margaret HospitalWA
Women's and Children's Hospital, AdelaideSA
Monash Children's, Southern HealthVIC
Royal Children's Hospital MelbourneVIC
Northern Sydney Central CoastNSW
The Children's Hospital at WestmeadNSW
John Hunter Children's HospitalNSW

All centres completed a survey that determined staff working in the diabetes service as well as other resources available, including level of access to a database facility. Centres reported frequency of patient visits, ability of patients and families to access allied health and psychological services, and, where available, glycated haemoglobin (HbA1c) outcomes for 2010.

Staffing, resources and outcomes

Each centre reported the number of staff (full-time-equivalents (FTEs)) employed to manage diabetes including specialist endocrinologists, junior medical staff, dietitians, social workers and psychologists, exercise physiologists or physiotherapists, and podiatrists. They also reported whether they provided outreach services and had a database as a clinical or research tool. Clinics also reported the median number of visits that each child with diabetes attended during a year.

Those centres with access to the information calculated the proportion of the children with diabetes attending their centre who had a mean HbA1c in 2010 that was less than 7.5% utilising the clinic assays used in clinic. This threshold was selected as it is the International Society for Paediatric and Adolescent Diabetes (ISPAD)-recommended target for glycaemic control in children.[18]

Results

Staffing and visit frequency

Staff available to each clinic was expressed as the number of FTE per 100 patients, and these data are shown in Table 2. As can be seen, there is wide variation between centres in staffing levels available to manage diabetes. On average, there are 0.43 doctors per 100 patients, 0.58 diabetes nurses, including educators, 0.19 dietitians, 0.10 psychologists, 0.13 social workers and 0.11 podiatrists. There are no exercise physiologists or physiotherapists. There is a single FTE nurse practitioner nationally.

Table 2. Staff available in 17 clinics throughout Australia and New Zealand expressed as number of full-time-equivalent (FTE) per 100 patients
CentreNumber of patients with type-1 diabetesDoctors per 100 patientsDiabetes nurses (including educators) per 100 patientsDietitians per 100 patientsPsychologists per 100 patientsSocial workers per 100 patientsExercise physiologists per 100 patientsPodiatrists per 100 patients
  1. NA, not applicable.
A980.200.200.000.000.000.000.00
B7300.730.740.270.000.290.000.00
C1300.381.540.000.000.000.000.00
D9300.430.750.220.140.230.000.00
E890.570.570.340.570.110.000.00
F7500.160.200.090.040.130.000.01
G700.450.710.290.000.710.000.00
H540.100.200.050.050.000.001.85
I16200.140.330.220.000.090.000.00
J3400.350.440.20.000.240.000.00
K660.230.450.120.000.000.000.00
L7700.230.390.090.050.000.000.00
M2021.980.990.500.400.200.000.00
N2900.620.860.410.140.070.000.00
O4500.350.600.140.140.000.000.00
P6000.250.600.130.130.000.000.02
Q3700.090.320.220.000.140.000.00
Total7559NANANANANANANA
Mean4450.430.580.190.100.130.000.11

On average, children and adolescents are seen 3.7 times a year in clinic and by a doctor. Three centres reported that they were only able to offer appointments three times per year. Ten centres offered appointments four or more times a year. When asked what proportion of patients is able to see various team members, the centres reported that on average, in 1 year, all children can be seen at least once by a diabetes nurse and doctor, 60% by a dietitian, 15% by a social worker and 10% by a psychologist. No patients had a formal review by an exercise physiologist, physiotherapist or podiatrist.

Other resources and activity

All large metropolitan tertiary centres provide an outreach service to patients in rural and remote areas. Access to a database was not universal; 82% of those surveyed reporting access to a basic clinical database and 47% to a more extensive database that could be used for audit and research.

Outcomes

HbA1c data from 2010 were available for 82% of children and adolescents in nine of the larger centres included in the survey. These included all the large tertiary centres in each state. Smaller centres were unable to readily access such data. HbA1c was measured by DCA 2000 in seven of these sites and by high-performance liquid chromatography in the remaining two sites.

Each site calculated the proportion of patients at their centre who had a mean HbA1c in 2010 of less than 7.5%. The mean number of children achieving this target overall was 27.2% (range in centres: 19–37%).

Discussion

This survey, although brief, has the strength of encompassing all major centres and most minor centres that manage children with T1DM in Australia and New Zealand. Furthermore, a comparison of the number of children included in the survey with projections in the Australian Institute of Health and Welfare report of 2008 suggests that the majority of children with T1DM (>75%) are included.[12] The object of the study was to determine to what extent the goals of the call to intensively manage diabetes that followed the DCCT had been achieved. There are positive and negative messages from the results of the survey. It is important to note that most children in Australasia attend centres, large or small, which are staffed by a team with specialised knowledge and experience in diabetes management in the young. On the other hand, it is clear that the resources dedicated to T1DM care do not match the increase in diabetes incidence or the increased complexity of therapy in the 21st century. This is reflected in the population of children achieving the defined glycaemic goal selected as the outcome measure –HbA1c <7.5%.

The essence of intensive therapy is a multidisciplinary team approach. The individual team members provide specialist knowledge and support to children and families with diabetes. This is required because of the complexity of the disease and the importance of managing all aspects of care. The survey has shown that in Australia and New Zealand, although most key members of the teams are represented, the clinician to patient ratios are significantly below accepted recommended levels. For example, the Australian centres reported 0.4 FTE doctors and 0.6 FTE diabetes nurses per 100 patients; this compares with the ISPAD recommended 0.8 FTE and 1.0 FTE, respectively.[19-21] Allied health care access was even more limited: there were 0.2 FTE dietitians for each 100 children (1 per 500) and 0.2 FTE psychologists or social workers per 100 children. Thus, although most patients are able to attend three monthly visits, access to critical team members is limited.

It is of particular concern that access to psychosocial care is so inadequate given the increasingly recognised high prevalence of mental health disorder in these patients and their families. Indeed, Australian data suggest that psychological disorder is now the most common complication of T1DM and its therapy in the young.[22] Psychosocial care is aimed to assist with adjustment, to identify established mental health disorder and to prevent future disorder.

It has been considered important for glycaemic targets to be set as standards in T1DM care. The American Diabetes Association has defined an HbA1c of below 7% in adults and older children as a reasonable goal of therapy.[23, 24] The ISPAD group has defined a goal of 7.5% in children and adolescents as achievable,[18] and contemporary National Health and Medical Research Council (NH&MRC)-approved evidence-based Australian Guidelines include this target.[25] Although this survey may be considered limited by a non-standardised assay, it should be noted that most centres were using the same methodology (DCA 2000) and that these methods are correlated nationally. The broad conclusion from the audit is that less than one third of young people with T1DM are achieving the ISPAD target. The Hvidøre study[21, 26] and other reports[27] have demonstrated that such targets are achievable.

The majority of individuals who develop T1DM do so during childhood, but the majority of individuals with T1DM are adults. This puts a priority on achieving glycaemic targets in the young to delay and reduce the complications of the disease later in life.[28] Although isolated reports suggest that care has improved since the 1990s, there is evidence that there has been little improvement over the recent 10-year period despite the availability of improved tools of therapy. It is important to address this problem if further improvements in the prognosis of T1DM are to be gained.

Acknowledgements

The authors acknowledge an unrestricted grant from Eli Lily to The Australasian Paediatric Endocrine Group (APEG) in support of this work.

Members list and institution:

Western Australia

Professor Tim Jones – Princess Margaret Hospital, Perth

Associate Professor Elizabeth Davis – Princess Margaret Hospital, Perth

Dr Barbara Sheil – Telethon Institute for Child Health Research, Perth

New South Wales

Dr Bruce King – John Hunter Children's Hospital, Newcastle

Carmel Smart – John Hunter Children's Hospital, Newcastle

Dr Donald Anderson – John Hunter Children's Hospital, New castle

Dr Neville Howard – The Children's Hospital at Westmead, Sydney

Professor Kim Donaghue – The Children's Hospital at Westmead, Sydney

Dr Michelle Jack – Royal North Shore Hospital, Sydney Central Coast

Dr Charles Verge – Sydney Children's Hospital

Associate Professor Maria Craig – The Children's Hospital at Westmead, Sydney

Professor Geoff Ambler – The Children's Hospital at Westmead, Sydney

South Australia

Professor Jenny Couper – Women's and Children's Hospital, Adelaide

Dr Jan Fairchild – Women's and Children's Hospital, Adelaide

Dr Elaine Tham – Women's and Children's Hospital, Adelaide

Dr Alexia Pena – Women's and Children's Hospital, Adelaide

Queensland

Associate Professor Andrew Cotterill – Mater Children's Hospital, Brisbane

Dr Gary Leong – Mater Children's Hospital, Brisbane

Dr Mark Harris – Mater Children's Hospital, Brisbane

Marina Noud – Mater Children's Hospital, Brisbane

Dr Louise Conwell – Royal Children's Hospital, Brisbane

Dr Jenny Batch – Royal Children's Hospital, Brisbane

Dr Leonie Gray – Mater Misericordiae Hospital, Rockhampton

Dr Robert McCrossin – Gladstone Hospital

Associate Professor Darrell Price – Pacific Private Clinic, Gold Coast

Dr Alan Sive – Townsville

Dr Judy Williams – Bundaberg Diabetes Centre

Dr Michael Williams – Mackay Base Hospital

Dr Nick Woolfield – Radcliff/Caboolture Diabetes Centre

Dr Tim Warnock – Cairns Diabetes Centre

Victoria

Professor Fergus Cameron – Royal Children's Hospital, Melbourne

Associate Professor Christine Rodda – Monash Children's, Melbourne

Dr Phil Bergman – Monash Children's, Melbourne

Tasmania

Dr Mark Pascoe – Royal Hobart Hospital, Tasmania

New Zealand

Dr Craig Jefferies – Starship Hospital, Auckland

Dr Ben Wheeler – Dunedin Public Hospital

Associate Professor Esko Wiltshire – Wellington Children's Hospital

Australian Capital Territory

Dr Anthony Lafferty – The Canberra Hospital

Ancillary