30th October 2015, Volume 128 Number 1424

Craig Jefferies, Neil Owens, Esko Wiltshire for the Clinical Network for Children with Diabetes in New Zealand, on behalf of the Paediatric Society of New Zealand diabetes clinical network

Type 1 Diabetes Mellitus (T1DM) is the most common form of diabetes in childhood and adolescents throughout New Zealand, irrespective of ethnicity and socioeconomic status. T1DM is progressively increasing in incidence worldwide by 3–5%/year, a phenomenon also seen in New Zealand.1-7 Although the incidence and prevalence of type 2 diabetes in children and adolescents in New Zealand are also increasing—particularly in Māori and Pacific populations—type 2 diabetes accounts for less than 10% of new onset cases of diabetes in this age range.8-11 The effect of this compounding increase on the T1DM population is a doubling of the numbers affected every 15–20 years, without including the additional predicted New Zealand population growth. Although an area of intense research worldwide, T1DM has no foreseeable intervention that will either delay or prevent the onset of disease.5

Based on a number of landmark studies, including the Diabetes Control and Complications Trial (DCCT)12 and the Epidemiology of Diabetes Interventions and Complications (EDIC)13,14 studies, there is good evidence for intensive management and improvement of glycaemic control in children and adolescents with T1DM.6,7 These studies, which included intensive management from a multi-disciplinary team coupled with intensive insulin management, have shown short-term (over six months) significant improvement in glycaemic control (mean HbA1c in adolescents in the intervention arm of DCCT 8% (64 mmol/mol) compared with 9.8% (84 mmol/mol) in the control arm), followed by significant reduction in long-term microvascular complications.12-17 Workforce resourcing is essential for these gains.16

The management of T1DM is also undergoing a revolution of technological improvements in glucose testing and monitoring, insulin delivery (pumps) and shortly closed-loop systems which require additional resourcing.18-20 These continued improvements and innovations increase the technical aspects and complexity of T1DM management in both paediatric and adult practice.

The Paediatric Society of New Zealand (PSNZ) formed a national clinical network for paediatric diabetes care in 2012. This network represented clinical teams that manage >95% of children and adolescents (<16 years of age) with diabetes, predominantly T1DM.4 Through this network we aimed to document and quantify the number of specialist clinical staff employed or available to resource children and adolescents with T1DM.

Methods

All secondary care centres throughout New Zealand who managed children and adolescents with diabetes were invited in mid-2012 to participate in a national survey of resourcing through multiple sources including: email and written invitation through the lead clinicians; or if not known, the service managers locally; or diabetes nurses or other diabetes team members. The majority of the replies were from the lead clinicians for paediatric diabetes in the DHBs.

All centres were asked to complete a survey to determine the numbers of staff working in paediatric diabetes services (including paediatric endocrinologists, paediatricians, diabetes nurse specialists). Access to dietitians and psychological services was determined, as well as other resources available: insulin pump therapy, continuous glucose monitoring systems (CGMS), and any database used. Visiting specialist clinics were not included, as they were infrequent and few patients with diabetes were seen in them. Information was also collected on the frequency with which patients attended clinic (with any diabetes health professional) and whether the local service knew their patients’ or service’s average HbA1c for 2012 (ie, whether they could provide the clinic mean HbA1c at the time they completed the survey).

Staffing was expressed as number of full-time equivalents (FTE) per 100 patients where possible. For ease of reporting, dietitians and psychologists are presented as dedicated FTE or not, where dedicated FTE reflects the clinician/allied health member being embedded within the diabetes team. This distinction of dedicated or not was provided from the individual centre. The authors calculated the FTE equivalents and contacted the centres to confirm the number was correct. For some smaller centres, nurse educator time is over-estimated as it includes tenths also used for adult services (as it was impossible to separate specific paediatric time for several smaller centres).

Results

Of the 21 clinic sites identified and invited, all completed the questionnaire. The majority of the replies were from the lead clinicians for diabetes in the DHBs. Three DHBs were covered by one centre, whereas three DHBs had multiple clinic sites (for these DHBs questionnaires were sent to each site). Two of these sites were from the same centre in one DHB (providing information on the adolescent and paediatric services separately)—these two were combined as one centre to enable comparison with other DHBs. Thus results are presented for 20 centres, covering >95% of New Zealand children and adolescents with diabetes, as shown in Table 1. A total of 1,587 children and adolescents were managed by these centres at the time of the survey. Centre size varied, reflecting the marked range in geographic distribution of the population in New Zealand (Table 2). The four clinics that had over 100 patients each represented >50% of the total group.

Table 1: Paediatric centres surveyed by District Health Board (DHB).

Centre

DHB

Whangarei

Northland DHB

Starship

Diabetes Service

Auckland DHB

Counties-Manukau DHB

Waitemata DHB

Waikids

Waikato DHB

Tauranga

BOP DHB

Rotorua

Lakes DHB

Gisborne

Tairawhiti DHB

Napier

Hawkes Bay DHB

New Plymouth

Taranaki DHB

Whanganui

Whanganui DHB

Palmerston North

Midcentral DHB

Masterton

Wairarapa DHB

Hutt

Hutt Valley DHB

Wellington

Capital & Coast DHB

Nelson* Wairau

Nelson/Marlborough DHB

Greymouth

West Coast DHB

Christchurch

Canterbury DHB

Timaru

South Canterbury DHB

Dunedin

Invercargill

Southern DHB

 *Survey responses obtained from two sites (paediatric and adolescent), combined for analysis as noted in text

Table 2: Clinic demographic details, by centre. 

Centre

No with diabetes

Age Range

(years)

Patients on pumps      N (%)

CGMS*

available

Mean

HbA1c

Database

available

1

43

0–15/18

4 (9.0)

Yes

N/A

Yes

2

52

0–18

4 (11.7)

Yes

N/A

No

3

160

0–15

14 (8.7)

Yes

75

Yes

4

57

0–21*

2 (3.5)

Yes

N/A

Yes

5

14

0–18

2 (14.0)

No

N/A

Yes

6

110

0–20

25 (22.7)

Yes

70

Yes

7

122

0–18

26 (21.3)

Yes

63

Yes

8

94

0–15

13 (13.8)

Yes

71

Yes

9

95

0–18

11 (11.5)

Yes

72

Yes

10

50

0–16

9 (18.0)

Yes

75

No

11

25

0–18

6 (24.0)

yes

N/A

No

12

19

0–17

0 (0.0)

no

N/A

No

13

61

0–17

7 (11.4)

yes

73

Yes

14

450

0–16

90 (20.0)

yes

69

Yes

15

56

0–18

6 (10.7)

yes

N/A

Yes

16

82

0–17

12  (14.6)

yes

N/A

Yes

17

38

0–18

0 (0.0)

no

N/A

No

18

29

0–15

5 (17.2)

no

85

No

19

10

0–17

1 (10.0)

no

84

No

20

9

0–17

6 (66.6)

Yes

N/A

No

TOTAL

1,587

 

251 (15.8)

17/21

N/A

13/21

*A small number of patients over 18 seen in adolescent clinic

N/A  Not Available 

As shown in Table 3, there was a wide variation between centres in all aspects of staffing: some centres had dedicated paediatric diabetes teams, though this was only seen in the five main centres. Only 20% of centres, representing >50% of patients, were staffed with paediatric endocrinologists. A further 30% had intermittent access to visiting paediatric endocrinologists. Overall, paediatric staffing (endocrinologists or general paediatricians) was at a median of 0.2/100 patients, range 0.1–0.4 and diabetes nurse staffing was at a median 0.7/100 patients, range 0.1–1.8.

Table 3: Staffing available, by centre 

 

Centre

Number

of patients

in clinic

Doctors

FTE per 100
patients*

 

Diabetes nurses

FTE per 100 patients

Dietitian

Dedicated FTE

Or Accessible

Psychology
services

Dedicated

FTE

Or Accessible

ISPAD
recommendation22,23

 

0.75

1.0

0.5

0.3***

1

43

0.4

1.6

Accessible

Accessible (limited)

2

52

0.10

0.8

Accessible

Accessible

3

160

0.2**

0.6

Dedicated

Dedicated

4

57

Nominal

0.5

Accessible

Accessible

5

14

Nominal

0.3

Accessible

Accessible (limited)

6

110

0.3

0.9

Dedicated

Dedicated

7

122

0.2**

1.0

Accessible

Accessible

8

94

0.2

1.5

Accessible

Accessible

9

95

0.2

0.3

Accessible

Accessible

10

50

0.3

1.0

Accessible

Accessible

11

25

0.2

0.1

Dedicated

Accessible

12

19

Nominal

1.0

Accessible

Accessible

13

61

0.3

1.0

Accessible

Accessible

14

450

0.4**

0.7

Dedicated

Dedicated

15

56

0.2

1.8

Accessible

Accessible

16

82

0.2

1.2

Accessible

Accessible

17

38

0.2

0.4

Accessible

Accessible

18

29

0.2

0.6

Accessible

Accessible

19

10

0.4

0.5

Accessible

Accessible

20

9

0.4

0.5

Accessible

Accessible

Median

 

0.2

0.7

 

 

*Paediatricians, including paediatric endocrinologists.

**Has a paediatric endocrinologist(s).

*** Recommendation includes psychologist and/or social worker
‡Nominal means most patients seen in general paediatric outpatient clinics rather than a paediatric diabetes clinic—in these centers specific paediatric diabetes time was impossible to determine, but is limited. 

 

Only four sites had a dietitian embedded in the paediatric diabetes team. In all other centres, the dietitian(s) were mostly employed to advise/manage adult patients and undertook paediatric work as a small part of their work with adults. Only 3 sites had dedicated psychologist(s) as part of the team, though others reported generic access to psychology support through routine child and adolescent mental health services or an alternative specific arrangement. No sites had a social worker or podiatrist in the team.

On average most children were seen 3–4 times per year in clinic by a doctor and/or multidisciplinary team. Around half of the centres (13/21) had access to some sort of database for diabetes in the DHB, but many did not routinely use any system or keep it up to date. Therefore, mean HbA1c/centre was only readily available from 11/20 centres, representing half of all children cared for by centres in the survey. Most sites used point-of-care HbA1c measures, such as DCA 2000 (Bayer).

Discussion

This is the first time there has been a survey of the clinical resources available to care for our children and young people with diabetes throughout New Zealand. Most children, in particular in the main centres, do attend a paediatric centre that is staffed by a team with specialised knowledge of diabetes and management in the child or adolescent. Despite this high attendance by patients, all centres were below the international recommendations for medical staff, there was enormous variation in nurse educator numbers and most do not have dedicated psychologists or dieticians. Only around half of centres have access to a dedicated database for measuring outcomes.

The New Zealand Ministry of Health quality standards for diabetes care acknowledge that:

“Young people with diabetes should have access to an experienced multidisciplinary team including developmental expertise, youth health, health psychology and dietetics” (standard 16) and “All patients with type 1 diabetes should have access to an experienced multidisciplinary team, including expertise in insulin pumps and CGMS when required” (standard 17).21

Despite this, resourcing at a DHB level for paediatric diabetes is relatively ad-hoc, with little or no acknowledgement of either the continued rise in numbers of children with T1DM, or the increased resourcing needed for the use of technology.

The International Society for Paediatric and Adolescent Diabetes (ISPAD) recommends a minimum of 0.75 doctors and 1.0 nurse/nurse educators per 100 children with T1DM.22,23 Due to marked variation in nursing ratios between centres, the median nursing ratio was not far below this level overall at 0.7 and included four centres above the ISPAD recommendation, and four centres close to it. However, this partly reflects an overestimation of nursing resource for child and adolescent diabetes in smaller centres, where the care of children is a part of diabetes nursing work focussed on adults, which is often not ring-fenced and the ‘tenths’ reported for this survey includes a significant amount of work with adults. There was also large variation between regions in nursing staff numbers, highlighting inequality in service provision. The median level of doctors involved in T1DM care, at 0.2/100 patients, is markedly low and of particular concern across the DHBs. Furthermore, it was not possible for centres to accurately state psychology and social work resources, as they are generally very low or non-existent. In comparison to a similar Australian workforce survey, we have fewer doctors, similar nursing ratios and equally low allied health numbers (Australia averages 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).24

General psychology input is important in youth with diabetes and their families. It needs to address much more than mental health and emotional well-being,15 though these are major issues, and are risk factors for premature death in adulthood with T1DM.25 The impact of T1DM is more stressful on families than childhood cancer over the medium to long-term.26 Diabetes, in particular diabetic ketoacidosis, impacts on childhood learning and cognition, both acutely (changing with diabetes control) and chronically.27,28 Psychology input is essential to enhance positive behavioural change for children and identify barriers that impede such change. Although access to formal psychiatric services for those with severe mental health issues is absolutely vital, it is the day-to-day coping with the chronic stress of diabetes that is the major need for most children and their families with diabetes.29,30

Generic access to allied health expertise is not conducive to a multidisciplinary approach. It does not allow team members to learn from each other, work collaboratively or reinforce consistent messages to the patient and family. Dietetic and psychology services need to be seen as key parts of treatment rather than an optional add-on. Similar logic should be considered for social work and exercise (physiologists or fitness experts) in the future. Exercise is one of the “three pillars of diabetes management”, along with diet and insulin first put forward by Joslin in the 1920s and is supported by RCT’s such as the DCCT.6,12

Considering the well-defined glycaemic goals in T1DM, it is a major concern that many centres do not have a formal up-to-date database to track their patients’, and overall, mean clinic HbA1c. The ISPAD target for HbA1c in children is <7.5% or 59mmol/mol.22,23 It is therefore a major concern that this measure and how many patients are ‘on target’ is not known by some clinics or nationally, and is not a measure that is part of health targets for DHBs. Previous New Zealand audit data in youth <26 years in 2003 has suggested overall sub-optimal glycaemic control, with mean HbA1c 9.1% (76 mmol/mol), particularly in adolescents and young adults up to age 20.11 Up-to-date national data regarding incidence, HbA1c and diabetes complications is required urgently. The PSNZ paediatric diabetes network is currently undertaking an audit and bench-marking of such outcomes in New Zealand, this should be available in 2015 and may also indicate whether there has been any increase in T1DM or type 2 diabetes in those under 16 years. The high response rate (100% of centres) is a strength of this study. However, it is no more than a snapshot in time, in 2012, and a more formal ongoing assessment of the diabetes specialist workforce is required, as the situation may have changed since then.

Conclusions

This survey suggests the majority of services providing care for children with T1DM in New Zealand are significantly under resourced. If children and adolescents with T1DM are to achieve intensive management and improved long-term glycaemic control, then adequate resourcing to manage this vulnerable population and accurate outcome measures (HbA1c in particular) are required throughout New Zealand. Future workforce planning is required to manage the expected increase in numbers of children and adolescents diagnosed with diabetes and to support families in achieving optimal glycaemic control. It also needs to take into account the increase in complexity of T1DM, the forecast New Zealand population increase and the increasing prevalence of type 2 diabetes amongst adolescents.

Summary

Type 1 diabetes (or insulin requiring diabetes) affects approximately 1,500 children and adolescents in New Zealand. It has defined treatment goals of diabetes management that require a group of paediatric doctors, nurses and allied heath workers who are specialised in diabetes to provide this care. If care is inadequate, then children’s health is affected (poor diabetes control, increased complications) and long-term this group will have increase health needs and increased complications. This survey compared current staffing in District Health Boards for diabetes in New Zealand to established international standards and in particular found that the majority of clinical services providing care for children with diabetes in New Zealand are significantly under-resourced. This may have significant impact on short and long term health of children and young people with diabetes in New Zealand.

Abstract

Aim

Landmark studies, including the Diabetes Control and Complications Trial, have demonstrated the need for intensive management and improvement of glycaemic control in children and adolescents with Type 1 Diabetes (T1DM). Our aim was to determine what clinical resources were present in New Zealand to manage diabetes in children and adolescents and compare this with international recommendations, via the Paediatric Society of New Zealand clinical network.

Method

All 21 District Health Board (DHB) secondary care sites in New Zealand managing children and adolescents with diabetes were invited to complete a survey about the specialist services they provided in 2012.

Results

All of the identified 21 sites (encompassing 20 centres) replied. These centres managed 1,587 children and adolescents with diabetes up to 18 years of age (>95% with T1DM), including 251 (16%) on insulin pumps. Average clinic HbA1c was not available for many centres. Staffing for specialists (general paediatricians or paediatric endocrinologists) was low (median 0.2/100 patients, range 0.1-0.4), but was relatively higher in diabetes nurses (median 0.7/100 patients, range 0.1–1.8). Despite the psychological and social burden of diabetes, the two allied health disciplines (psychology services and social worker) were the hardest to quantify as dedicated resource in these disciplines did not exist in all but three centres.

Conclusion

This survey suggests that the majority of clinical services providing care for children with diabetes in New Zealand are significantly under-resourced.

Author Information

Craig Jefferies, Paediatric Diabetes and Endocrinology Service, Starship Children’s Hospital, Auckland District Health Board, Auckland; Neil Owens, Diabetes Service, Christchurch Hospital, Canterbury District Health Board, Christchurch; Esko Wiltshire, Department of Paediatrics and Child Health, University of Otago Wellington, Wellington 

Acknowledgements

The authors wish to gratefully acknowledge the support of the PSNZ in setting up the Clinical Network for Children with Diabetes in New Zealand. The writing group wish to thank the contribution from the wider membership of the network: 
North Island
Northland DHB E de Goey & Dr V Tyrell
Auckland DHB Dr F Mouat & Dr C Jefferies
Counties Manukau DHB Dr F Mouat & Dr C Jefferies
Waitemata DHB Dr F Mouat & Dr C Jefferies
Bay of Plenty DHB Dr J Armishaw
Taranaki DHB L Mercer & Dr Y Anderson
Waikato DHB Dr J Goldsmith
Hawkes Bay DHB Dr P Moore
Lakes DHB Dr J Nel
Tairawhiti DHB Dr G Lear
Mid Central DHB Dr N Pererria
Whanganui DHB H Adams 
Wairarapa DHB Dr A Leinfellner
Hutt Valley DHB Dr P Campbell-Stokes
Capital & Coast DHB   Mr L McTavish
South Island
Nelson/
Marlborough DHB Dr W Hunter
Canterbury DHB N Owens
Southern DHB J Rayns & Dr P Tomlinson
South Canterbury DHB Pat Allan

Correspondence

Dr Craig Jefferies, Paediatric Diabetes and Endocrinology Service, Starship Children’s Hospital, Park Road, Grafton, Auckland 1050, New Zealand

Correspondence Email

Craigj@adhb.govt.nz

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