T Savage¹, A Clarke², C Costigan¹, BG Loftus³, D Cody^1
1Department of Endocrinology & Diabetes, Our Lady’s Children’s Hospital, Crumlin, Dublin 12
²Diabetes Federation of Ireland, 76 Lower Gardiner Street, Dublin 1
³Department of Paediatrics, University College Hospital Galway, Galway

Abstract
This is the first assessment of the services available and care received by children and adolescents with Type 1 Diabetes in the Republic of Ireland. Questionnaires were mailed to 19 centres in 2006 identified as providing care for children and adolescents with Diabetes. Replies were received from all centres. 29 consultants provide care for a reported 2040 patients in the 19 centres. 16 (50%) paediatricians surveyed expressed a special interest in Diabetes while 27 (94%) see children in a designated Diabetes clinic. The average caseload per whole-time-equivalent (WTE) Diabetes Nurse Specialists (DNS) is 162 patients and 416 patients per WTE Dietician. 13 of the 19 centres (70%) have no access to Psychology services. This review of children’s diabetes services highlights the current deficiencies, particularly in relation to support staff, with respect to international recommendations. Improvements in resources to reduce long-term complications needs urgent addressing at both local and national levels.

Introduction
The incidence of Type 1 Diabetes in childhood and youth continues to increase with studies quoting a doubling in the annual incidence rate every 20 years¹. Type 1 Diabetes is associated with potential significant morbidity and a reduced lifespan, particularly in poorly controlled diabetes. While the highest incidence rate of newly-diagnosed Type 1 Diabetes is among young teenagers, the increasing rate has been seen most notably in the under-5 year age group². This increase has been mirrored by increasing intensity of management of this chronic condition³. These factors, even when considered on their own, have significant resource implications for an effective childhood diabetes service with respect to reduction in both short-term and long-term morbidity and mortality rates^4,5.

Since 1998 in the UK, the Diabetes National Services Framework (NSF) has set targets and standards3 and the National Institute of Clinical Excellence (NICE) has published guidelines for the management of Type 1 Diabetes⁶. These frameworks allow comparison of Irish service provision against internationally accepted standards. This is of particular importance in the Republic of Ireland where recent data suggests a high incidence of Type 1 Diabetes with a calculated crude incidence rate of approx 16/100,000 per year⁷. While the proposed deficiencies in these services have been raised in the print media and in Dáil Éireann, little has been done to evaluate or improve the situation^8,9. This survey aims to establish the current situation in relation to service provision for children and adolescents with diabetes in this country.

Methods
We identified 19 centres in the Republic of Ireland caring for children and adolescents with diabetes. Questionnaires were mailed to 29 consultants in the 19 centres in 2006. Information was sought about patient numbers, ages, clinic size, procedures and patterns of care. Availability of support staff was evaluated.

Results
A total of 19 centres were surveyed with a 100% response rate. 29 consultants provide care for a reported 2040 patients in the 19 centres. Ages of patients ranges from 1 to 20 years. Results outlined relate to the centre involved in diabetes care rather than individual consultant practice. Centre patient populations ranged from 32 to 400.

General Clinic data
International standards suggest that children with diabetes should be seen in a designated diabetes clinic10. Our survey revealed that 18 of the 19 centres (95%) have a dedicated paediatric diabetes clinic. The number of clinic visits per patient per year ranges from 3 to 8.

Of the 29 paediatricians, 5 (17%) describe themselves as paediatric endocrinologists, 9 (32%) as paediatricians with a special interest in diabetes, and 15 (51%) as general paediatricians. Caseload per paediatrician varies widely between centres. In the 4 larger centres, the caseload ranges from 128 to 270 patients per paediatrician whereas in many of the smaller centres, the caseload ranges from 25 to 70 patients per paediatrician.

Current guidelines advise that in districts with fewer than 70 children with diabetes under the age of 16 years, all should be under the care of a single designated consultant paediatrician¹⁰. 10 centres care for less than 70 patients. In 5 of these centres, patients are cared for by one paediatrician, while care is shared among 2 or 3 paediatricians in the remaining 5 centres.

Of the 2040 patient population, 78 (4%) were on insulin pump therapy at the time of this survey. This option of insulin pump therapy is available in 4 of the 19 centres.

The age of handover to adult services ranges from 14 to 20 years old with 8 centres stating ‘Leaving Certificate’ as handover age. In the remaining 11 centres, the median handover age is 16 years. Transitional clinics, to facilitate handover to adult care were provided in 7 of 19 centres (38%).

Support Staff: Diabetes Nurse Specialists Dietetic Support Psychologist / Counsellor Services
International standards suggest that clinics should be supported and attended by a paediatric DNS with children’s and diabetes training with a maximum caseload of 70 to 100 children per nurse (whole time equivalent)10. Information on availability of Diabetes Nurse Specialists was received from 17 centres. One centre has no DNS on staff. 4 centres (24%) have DNS who work solely in paediatric diabetes. The remainder (76%) cover other paediatric sub-specialties and/or care for adults with diabetes. Staffing levels of DNS are expressed in terms of caseload per Whole Time Equivalent (WTE) (Table 1). When one considers the 11 smaller centres separately, the average caseload per WTE DNS is 210 patients with 9 of these centres having a caseload of more than 300 patients per WTE DNS.

Current guidelines suggest that patients should have easy access to both dietetic and psychology support and that a dietetic consultation should be available at diabetes clinics¹⁰. Information on availability of dietetic consultations was received from 14 centres. There is no dietetic service in 2 of these 14 centres. Dietetic staff in the remaining 12 centres carry a large patient caseload (Table 1). Six centres stated their access to psychology services as very limited. The remaining 13 centres have no access whatsoever to psychology or counsellor services.

Glycaemic control, complication monitoring & Screening for associated conditions
Standards suggest that HbA1c should be measured at each clinic visit, thyroid function annually and coeliac screen at diagnosis and 3 yearly thereafter. Screening for retinopathy and microalbuminuria should occur annually from the age of 12 years10. Glycated Haemoglobin (HbA1c) is measured at every clinic visit in 17 centres (89%) and 3 times per year in the remaining 2 centres. 15 centres (79%) screen annually for retinopathy in children over 12 years with the remainder screening at least once every 2 years. 17 centres (89%) screen annually for microalbuminuria with the remainder screening at least once every 2 years. 14 centres (74%) screen for celiac disease at least 3 yearly and 11 centres (58%) screen annually for thyroid disease. 10 centres (53%) screen annually for hyperlipidaemia in children over 12 years old.

Education and support
Written local protocols are available for the management of diabetic ketoacidosis in all 19 centres; for children undergoing surgery in 12 centres (63%) and for severe hypoglycaemia in 14 centres (74%). A local diabetes register is maintained in 15 centres (79%), a 24 hour advice line is provided in 13 centres (68%) and 10 centres (53%) have access to local Diabetes parents’ support groups.

Discussion
This is the first national survey to evaluate services for children with diabetes in the Republic of Ireland. Where applicable, results of our survey were compared to international recommendations^6,10.

Overall, there are some encouraging results from this survey, particularly in relation to the provision of dedicated paediatric diabetes clinics, the mean clinic visits per annum, the frequency of HbA1c measurement and complication screening. 65% of the patient population (2040) is cared for in the 6 larger centres; with 10 centres caring for less than 70 patients each. Five of these centres have two or more consultants as designated care providers. This contrasts with the recommendation that in districts with fewer than 70 children with diabetes under the age of 16 years, all should be under the care of a single designated consultant paediatrician¹⁰. This is to ensure that one lead paediatrician coordinates patient care and continually updates their own skills and knowledge in the care of children with diabetes. A recent positive step has been the establishment of a Children’s Diabetes Interest Group, facilitated through national study days organised by the Diabetes Federation of Ireland. This group is established to encourage ongoing collaboration and educational support for all members.

The limited availability of transitional clinics (38%) is particularly concerning. Once leaving paediatric care, it is common for the young adults’ visits to decline, potentially resulting in deterioration in diabetes control and establishment of early vascular complications¹¹. It is estimated that 40% of young adults aged 18 to 25 years are lost to follow up on leaving paediatric care¹¹. A smooth transition has been shown to lead to a reduction in the number of patient admissions and a sustained improvement in HbA1c¹². The provision of transitional services remains an essential component of an effective children’s diabetes service.

The major deficiencies highlighted by this survey are in the area of support staff. While 18 of the 19 centres (95%) have a diabetes nurse specialist (DNS) on staff, the average caseload is 162 patients per WTE DNS. This is contrary to the recommended 70-100 patients per DNS6. The vital role of the DNS in education and ongoing patient care is well recognised¹³. The increasing intensification of treatment, including multiple injection and insulin pump therapy along with their current caseload makes their goals increasingly difficult to achieve. Equally unsatisfactory is the area of dietetic support, with an average caseload of 416 patients. Increasingly complex insulin regimes, necessitates detailed dietetic education¹⁴. This is not possible at current staffing levels.

The number of patients receiving insulin pump therapy at the time of this survey was 4%. All but three patients attended one of the 3 larger centres. The reason for this is most likely related to expertise availability and support staff levels required for such therapy. The absence of availability of psychology services in 13 of the 19 centres and the extremely limited availability in the remaining 6 centres is a cause for serious concern. The role of the clinical psychologist in supporting patients through complex psychosocial problems; particularly amongst the adolescent cohort, makes them an essential part of the diabetes team.

The scope of our survey did not make it possible to ascertain accurate national average glycated haemoglobin. The absence of a regional and national database containing this information makes it difficult to evaluate the performance of each centre in attempting to optimise their HbA1c levels. The St Vincent Declaration recommends a national diabetes register in each country, to record and analyse diabetes outcomes¹⁵. A National Childhood Type 1 Diabetes Register is currently in its advanced stage of establishment. This is another welcome positive step in childhood diabetes care.

In conclusion, this survey, while highlighting some positive aspects of National diabetes care, demonstrates areas of serious deficiency. This is particularly evident in the area of support staff and transitional care. Children with diabetes should be under the care of a lead paediatrician in all centres and in centres with less than 70 patients, one paediatrician, with a special interest in diabetes, should be responsible for their care. Improvements in resources to help reduce potential complications for this vulnerable group needs to be addressed as a matter of urgency at both local and national level.

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