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Abstract
Aim To assess the provision of UK paediatric and adolescent diabetes services and examine changes in service delivery since 2002.
Method Questionnaires were sent to the lead paediatric consultant from all paediatric and adolescent diabetes services (n=205). Questions were based on National Institute for Health and Clinical Excellence and Scottish Intercollegiate Guidelines recommendations for diabetes care in childhood. Results were analysed using parametric and non-parametric tests.
Results 129 Services (63%) returned questionnaires involving 220 clinics. Staffing has improved and 98% of consultants have a special interest in diabetes (89%, 2002). In 88% of services, the diabetes specialist nurse worked solely in paediatric diabetes (53%, 2002). Only 21% of clinics have a psychological professional integrated within the diabetes team (20%, 2002). Over 94% of services offered support with intensive insulin regimens causing problems at school for 36% of services. Almost all services offer annual microvascular screening (98–100%) but transitional care was variable; only 76% of services have specific local protocols for transition and 21% organise transfer by letter only.
Conclusion Paediatric and adolescent diabetes services are rising to the challenge of providing high-quality care despite rising prevalence and increasingly complex insulin regimes. Services have improved in a number of key areas but serious deficiencies remain.
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Introduction
The incidence of type 1 diabetes has doubled in the last decade especially in younger children.1 The management of these individuals has become more complex to avoid long-term complications of diabetes yet maintain good quality of life. Recent national audit data suggest that diabetes control is consistently poor throughout the UK.2 It is possible that deficiencies in clinical service provision may have an adverse impact.
Since 1988, there have been four surveys of UK childhood diabetes services which have shown an improvement in service provision.3,–,6 The last survey in 2002 highlighted serious deficiencies in dedicated paediatric staff numbers, poor access to psychology support and difficulties in transitional care.6 Since then, the National Institute for Health and Clinical Excellence (NICE)7 and the Scottish Intercollegiate Guidelines (SIGN) Network8 published guidelines for standards of diabetes care for children. A fifth national survey has been performed to assess services against these criteria by Diabetes UK, Association of Children's Diabetes Clinicians, British Society of Paediatric Endocrinology and Diabetes (BSPED) and Association of British Clinical Diabetologists (ABCD).
What is already known on this topic
▶. In 2002 services for children had improved; children were seen in larger, more specialised clinics by consultants with an interest in diabetes.
▶. There was poor access to specialised psychological and psychiatric services.
What this study adds
▶. Transitional care is still variable, only 76% of services have specific local protocols for transition and 21% of services still organise transfer by letter only.
▶. There is a need to improve support services such as 24-h telephone contact with professional advisors and access to psychological support.
Methods
A working group developed and piloted a questionnaire comprising 73 open and closed questions examining the provision of paediatric diabetes services in England, Northern Ireland, Scotland and Wales. Topics were based on recommendations from NICE and SIGN. It was recognised that some clinical services would operate more than one clinic in different geographical locations. Therefore some questions related to the whole service and some to individual clinic provision. Although the questionnaire was designed so comparisons could be made with previous surveys, some comparisons proved difficult.
Lead consultants from all identifiable services were invited to complete the survey. Services were emailed via ‘opinion-taker’ website. Where emails were undelivered, postal copies were sent. A reminder questionnaire was emailed or posted after 1 month followed by a telephone reminder. Data were collected between April and December 2008.
Data analysis
Results are presented by service, except where responses by clinic were invited.
Completed online questionnaires were exported into Microsoft Excel and SPSS v16 for analysis. Results were analysed using parametric and non-parametric tests according to the distribution of the data.
Results
A total of 205 questionnaires were posted and responses received from 129 services (63%) involving 220 clinics. Responses were received on behalf of 196 paediatric consultants caring for a total of 17 071 children and young people (CYP) of whom 13 721 were aged 15 and under. Table 1 summarises key survey results and compares to findings from the four previous surveys.
Comparison of results to previous surveys
Workforce
Most services were led by consultants with an interest in diabetes: 9% were paediatric diabetologists/endocrinologists, 51% were paediatricians with a special interest in diabetes and 38% were paediatricians with a special interest in diabetes and endocrinology. Only 2% of services were staffed by general paediatricians (11%, 2002, p=0.004). Fifty-eight per cent (73) of services were run by one consultant and 60% of consultants dedicate 1–2 programmed activities (4-h sessions) to diabetes.
Most clinics (94%) were attended by a Paediatric Diabetes Specialist Nurse (PDSN) 88% of whom worked solely in paediatrics (53%, 2002). Twenty-four per cent of services have support from adult-trained DSNs (28%, 2002) and 72% (123) of PDSNs work in both hospital and community settings (91%, 2002, p<0.000). Nursing caseloads have decreased from one nurse to 147 patients in 2002 to 1:92 in 2009.
Ninty-three per cent of clinics offer CYP dietetic support (87% of clinics reported that a dietitian regularly attended clinics, 2002). Only 21% of clinics have a psychological professional working as an integrated member of the diabetes team. The median whole time equivalent available to these clinics is 0.2 (range, 0.02–2). Where there is no dedicated psychological professional, referrals may also be made to the following: 73% to a clinical psychologist (87%, 2002; p=0.005), 40% psychiatrist (90%, 2002), 16% counsellor (27% in 2002), 14% social worker (18%, 2002), 10% nurse therapist (49%, 2002), 10% family therapist, 6% psychotherapist and 1% health psychologist. Appointment waiting times ranged from 0 to 40 weeks, the median being 10 weeks (1–18 months, 2002).
Fifty-five per cent of services provide diabetes training for junior doctors. Four per cent reported that trainees spent no time attending the diabetes service and 60% had trainees who spend 10% or less of their time in outpatients, where the majority of children with diabetes are seen.
Organisation of paediatric diabetes services
Eight per cent of services reported that children are not seen in a designated paediatric diabetes clinic (2%, 2002) and fewer (44%) operate age-banded clinics (71%, 2002 (p<0.000)).
Transition
Seventy-six per cent of clinics have specific local protocols to transfer young people from paediatric to adult services (84%, 2002). A variety of models of transition were reported with services often using more than one model (table 2). Transfer started at 16 years (median; range, 11–18 years) ending at 18 years (range, 14–25 years).
Models of transition used in clinics
Education
Ninty-five per cent of services report that they offer CYP educational opportunities; 70% offer a structured education programme for those newly diagnosed with type 1 diabetes.
Half of services offer an alcohol education programme to young people, 98% inform CYP about general health problems associated with smoking and 51% offer CYP smoking cessation programmes if appropriate. Eighty-seven per cent of services advise about driving and 78% give contraceptive advice.
Management of diabetes
Although NICE recommend that children with newly diagnosed diabetes are managed at home only 26% of services offer this option and 68% of services manage all children as inpatients. Thirty-one per cent of services report that CYP and their families are involved in making decisions about care provided by the diabetes team through a written care plan, 65% involve patients but not a written plan.
Only 44% of services offer 24-h access to advice from the diabetes team. Most services keep a register of patient data: 66% keep this electronically, 25% on paper, 4% have both and 6% have none.
Insulin regimens
Ninty-four per cent of services offered support with intensive insulin regimens and 78% offer continuous subcutaneous insulin infusion (CSII). Seventy-eight per cent of the services who offer CSII have a trained specialist team available to initiate insulin pump therapy. The median number of CYP using insulin pump therapy per service is 5 (range, 0–69); 5.7% (5) of clinics who have pump facilities had no patients on pumps.
Monitoring glycaemic control
The mean HbA1c reported by services for CYP under 16 years was 8.6% (70 mmol/mol) (range, 7.7–9.7% (61–83 mmol/mol)). Most (97%) services inform CYP that the target for long-term glycaemic control is an HbA1c level of less than 7.5% (58 mmol/mol). Services take a more flexible approach to younger children and reported aiming for a mean of 7.8% (62 mmol/mol; median, 7.5% (58 mmol/mol); range, 6.5–9% (48–75 mmol/mol)) for 0- to 5-year olds, 7.6% (60 mmol/mol) for 6–11-year olds (median, 7.5% (58 mmol/mol), range, 6.5–8.5% (48–69 mmol/mol)) and 7.5% (58 mmol/mol) for CYP 12 years or older (median, 7.5 (58 mmol/mol), range, 6.5–9% (48–75 mmol/mol)). Seventy-five per cent of services ensure that HbA1c measurements are available at every outpatient clinic (86% of clinics, 2002, p=0.02).
Guidelines
Most services have local protocols in place for CYP with diabetes to support diabetic ketoacidosis (99% follow BSPED's protocol), hypoglycaemia (94%), surgery (94%) and sick day rules (92%).
Complications and associated complications
Table 3 presents data on how often screening for diabetes related complications and associated conditions is offered. This survey did not examine uptake of screening within services as this is examined by national audit.2
Services offering screening for complications and associated complications
Sixty-six per cent of services offer CYP an annual podiatric examination and injection sites are inspected at each clinic visit in 92% of services. Eighty-five per cent of services have access to the national retinal screening programme for all young people over 12 years old.
Managing diabetes in schools
All services report that the diabetes team liaise regularly with school staff to offer diabetes education and information. However, 36% have found it difficult or very difficult to arrange for someone at primary school to carry out blood glucose monitoring and 66% found it difficult or very difficult to find someone to administer insulin. Eighty-three per cent of services report that where the child is unable to inject insulin themselves, parents provide this support. Other support comes from other school staff (43%), the teacher (33%) and the school nurse (18%).
Discussion
As in previous surveys these data suggest that paediatric services in the UK are improving but there is wide variation in how services are provided and significant shortfalls exist in key areas.
The trend towards specialisation of clinicians continues and 98% of services are led by consultants with a special interest in diabetes however this is in jeopardy with the apparent lack of dedicated training of junior doctors. The provision of specialist nursing care has improved with the majority being paediatric nurses. There are still serious deficiencies in psychological support which has remained static for 14 years, despite the emphasis placed on this in national guidance.
Services felt they provided support through education and engagement with CYP through collaborative care planning: 70% offer structured education, most likely a locally developed programme as currently no validated educational programmes for children exist. Most offer a wide choice in insulin regimen, however alarmingly of those providing pump therapy not all are compliant with NICE by ensuring all staff have received the necessary training. Fewer than half of services offer 24-h access to advice from the diabetes care team which is concerning given the increasingly complex nature of diabetes management.
The data suggest almost all services offer screening for microvascular complications and associated conditions, yet only 60% of CYP have had blood pressure measured and 26% had retinal screening (National Diabetes Audit (NDA) 2007–2008). It is not possible to link our data with NDA data so the reason for this discrepancy remains unclear. The presence of an electronic register in services which may help with data collection and correlation between surveys has not changed since 2002.
The process of transition remains problematic. Only three quarters have local protocols for transitional care and less than half operate age-banded clinics despite data which suggest CYP prefer being seen in clinic with their peers.9 A number of different methods of transition are used reflecting the lack of robust data on the optimum method of transfer.9 Almost a quarter of services arrange transfer by letter only which is unlikely to prepare an adolescent adequately for transition.
The difficult issue of diabetes care in schools has recently been highlighted by a Diabetes UK survey.10 Two thirds of services reported that it was difficult or very difficult to find school staff to administer insulin and 83% of services reported parents doing injections at school. Children spend up to a third of their waking hours at school during term time and need support to manage their diabetes in this environment if overall control is to be improved.
There are a number of limitations to the survey. The response rate has declined to 63% which may reflect the overwhelming number of surveys emailed to clinicians and a lack of perceived benefit in participation if no improvements arise from surveys. As such results cannot be generalised to all units. Furthermore, as results are based on self-report there is a risk that some units may overestimate their responses. There are also methodological considerations since the introduction of NICE and SIGN standards of care which have made direct comparisons between 2002 and 2008 problematic.
In conclusion, national guidance may have influenced service delivery since 2002, in particular clinician and nurse specialisation and access to complication screening. Improvements are not universal and there are persistent deficiencies in dietetic provision, psychological support and transition process. In the future it will be important to link service delivery with outcomes, as collected by a national audit which should be made mandatory, if we are to deliver high quality diabetes services to increasing numbers of CYP with more complex management regimens.
Acknowledgments
The authors would like to thank Deborah Christie for her advice relating to psychological provision for diabetes.
Footnotes
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Funding This work was supported by Diabetes UK and ABCD.
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Competing interests None.
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Provenance and peer review Not commissioned; externally peer reviewed.