Diabetes is one of the most common chronic disorders in emerging adults (15–25 years of age), and the prevalence of both type 1 diabetes (T1D) and type 2 diabetes (T2D) in New Zealand continues to increase in this age group.1,2 Tight glycaemic control in both T1D and T2D is well known to reduce diabetic microvascular and macrovascular complications and improve survival.3 However, in New Zealand and worldwide, emerging adulthood is typically the period of worst glycaemic control in the lifespan due to the high prevalence of psychosocial stressors and increased insulin resistance of puberty and risk-taking behaviours.4,8 In addition, the glycaemic control of emerging adults with diabetes in New Zealand often deteriorates due to the loss of support from family and friends from moving regions, the failure of support from paediatric services to extend to emerging adulthood and the loss of public funding for insulin pump therapy as glycaemic targets are no longer met. Given the high prevalence of psychosocial stressors and the loss of support, the International Society for Paediatric and Adolescent Diabetes’s (ISPAD’s) guidelines recommend that emerging adults with diabetes receive ambulatory care from a dedicated multidisciplinary team consisting of 0.75 full time equivalent (FTE)/100 patients of an endocrinologist, 1–1.25 FTE/100 patients of a diabetes nurse specialist, 0.5 FTE/100 patients of a dietitian, 0.3 FTE/100 patients of a psychologist and 0.3 FTE/100 patients of a social worker or youth worker.5
Although the multidisciplinary clinical resources caring for children with diabetes in New Zealand in 2012 has been published,6 the national clinical resources available for emerging adults with diabetes is yet unknown. The New Zealand Diabetes Young People Special Interest Group was formed in 2016 with the aim of improving the care of emerging adults with diabetes nationally. Through this group we aimed to characterise the clinical workforce and resources available for the care of emerging adults with diabetes in New Zealand.
In October 2018, lead clinicians or representatives of the New Zealand Diabetes Young People Special Interest Group from each of the 20 district health boards (DHBs) in New Zealand were invited via email to participate in a national survey on the clinical workforce caring for emerging adults with diabetes. These contacts were encouraged to discuss with other team members and service managers as required to complete the survey to determine the numbers of staff caring for emerging adults with diabetes, including endocrinologists, general physicians, general practitioners, nurse practitioners, diabetes nurse specialists, dietitians, psychologists, social workers, youth workers or kaiāwhina/health navigators. Staffing is expressed as number of FTE per 100 patients for comparison. Dietitian, psychology, social work, youth workers and kaiāwhina FTE are defined by whether these staff are dedicated (ie, they are embedded within the diabetes team) or only accessible (ie, they are not embedded within the team). The distinction of dedicated emerging adult diabetes teams and staff were determined by each DHB. Only FTE of staff in dedicated multidisciplinary teams (MDTs) caring for emerging adults with diabetes is presented, because either the numbers of patients weren’t known or it was impossible to separate specific FTE for the care of emerging adults from that of older adults. Indeed, many of the smaller centres without a dedicated MDT did not have a database of their patient numbers, so these MDTs were asked to provide their best estimate of numbers. Clinical nurse specialist FTE in smaller, dedicated MDTs was often over-estimated because their FTE also involved care of children or older adults, so this data are presented as median values.
DHBs were also asked about the age of transition from paediatric services, whether registrars worked within emerging adult teams and whether their service that cares for emerging adults had a database of current patients with or without clinical data (eg, HbA1c), was interested in contributing towards a national database for emerging adults, provided specialist out-of-hours care for their emerging adults with diabetes or had an intervention programme for emerging adults with T2D. The authors confirmed with each survey responder that all information was correct.
Responses were received from all 20 DHBs, who together provide care for approximately 2,300 emerging adults with diabetes in New Zealand. The median age of transfer from paediatric services to emerging adult services was 16 years (range 15–18 years), and all DHBs offered flexibility in their transition depending on clinical circumstances (see Table 1). Emerging adults with diabetes were cared for by a dedicated MDT in twelve DHBs (60%), by general adult diabetes services in five DHBs (25%), by general medicine in two DHBs (10%) and by primary care in one DHB (5%). The median number of emerging adults cared for by a dedicated MDT was 177 (range 40–370), and all MDTs contained at least one endocrinologist and one diabetes nurse specialist (see Table 2). Two dedicated MDTs also contained nurse practitioners, and the FTE per 100 patients for all team members are outlined in Table 2. Eight of the twelve MDTs (67%) had dedicated dietitian tenths, and all DHBs had access to a dietitian. Only three MDTs (25%) had dedicated psychology tenths, and six DHBs had no access to psychology services. Only one MDT (8.5%) had a dedicated social worker, and three MDTs (25%) had a dedicated kaiāwhina or health navigator.
Table 1: Demographic details of the care of emerging adults with diabetes by DHB region.
Table 2: Staffing of dedicated teams caring for emerging adults with diabetes by DHB region.
Only one DHB provided training for registrars in the care of emerging adults with diabetes. Twelve DHBs (60%) had a database of their emerging adults, but only four DHBs (25%) had a database with clinical information such as recent HbA1c levels. All DHBs were keen for a national database, and 18 DHBs (90%) were keen for increased collaboration to improve the care and transfer of emerging adults between DHBs. Only one DHB provided specialist out-of-hours care for their emerging adults with diabetes. No DHB had an intervention programme for emerging adults with T2D.
Although it is pleasing that more than half of DHBs have a dedicated multidisciplinary team caring for emerging adults with diabetes, it is concerning that the staffing of these teams is significantly under resourced compared to international guidelines. Indeed, in comparison to international guidelines, the median FTE/100 patients were more than seven-fold less for endocrinologists, three-fold less for diabetes nurse specialists, ten-fold less for dietitians and thirty-fold less for psychologists.5 Emerging adulthood is recognised as the period with the greatest psychosocial stressors in a person’s lifespan,4 so it’s particularly concerning that only three MDTs had a dedicated psychologist, only one MDT had a dedicated social worker and six DHB teams had no access to a psychologist. It is also concerning that only three MDTs had access to a kaiāwhina or health navigator, when there are marked inequities in diabetic outcomes between Māori and non-Māori in this age group.7
The lack of clinical multidisciplinary resources available for the care of emerging adults with diabetes is further emphasised by comparison to the resources available to paediatric diabetes teams in New Zealand. The median FTE/100 paediatric patients with diabetes for the 20 DHB teams in 2012 was approximately two-fold greater for both endocrinologists and diabetes nurse specialists compared to our data for emerging adults;6 and, similarly to our study, there was a wide variation in medical and nursing staff numbers between DHBs and a scarce number of dedicated dietitians and psychologists within diabetes teams, which highlights the inequities in care between regions, or the ‘postcode lottery’ effect. The wide variation in staffing FTE is likely due, at least in part, to overestimations of FTE in smaller centres, which could be explained by FTE being unable to be differentiated from FTE caring for children or older adults with diabetes. Nevertheless, the reduced clinical resources available to teams caring for emerging adults, compared to the resources available to teams caring for children with diabetes, is worrying given that emerging adulthood is the period of life when it is most difficult to obtain good glycaemic control in New Zealand and worldwide.8 In addition to lower staff numbers, MDTs caring for emerging adults with diabetes in New Zealand often have reduced access to social support services and non-governmental organisations compared to their paediatric colleagues. Notably, emerging adults lose the childhood disability allowance that many families used to fund flash or continuous glucose monitoring, which would significantly improve their glycaemic control.9 Therefore, it is likely that the reduced availability of resources contributes to the deterioration in diabetes outcomes in the transition from paediatric to emerging adult diabetes care.10
The lack of training opportunities, the discharge of patients to primary care in one DHB region and the lack of benchmarking with low database use suggests that the care of emerging adults continues to not be recognised as a subspecialty of diabetes care in New Zealand. Indeed, of particular concern is that no DHB provided an intervention programme for emerging adults with T2D, despite that T2D in emerging adults is greatly increasing in prevalence, and it is a much more aggressive disease than it is in adults.11 Further, the greater burden of complications and diabetes distress from T2D in this age group emphasises the need for their care to be provided by a specialised multidisciplinary diabetes team.4,5 The development of a specialised multidisciplinary team may not be feasible for many smaller DHBs, but access to a psychologist and dietitian with knowledge of diabetes remains important and may require referral to a tertiary centre.
This study has several limitations. Firstly, it is not known whether the ISPAD guidelines are directly applicable to the New Zealand setting, particularly in the ‘ideal and culturally appropriate care’ of Māori and Pacific emerging adults with diabetes. This is important because, although Māori and Pacific emerging adults are less likely to have T1D (the most common type of diabetes in this age group), they are more likely to have less healthy glycaemic control and a greater burden of diabetic complications.8,12 Moreover, it is concerning that many DHBs were unable to provide any ethnicity data for emerging adults for the different types of diabetes and glycaemic control, which is also not currently possible from national diabetes registers. This data is urgently required to identify and then reduce the inequities among emerging adults with diabetes in New Zealand, which may include the development of models of care that differ from those used internationally. A further limitation of this study, as with any survey, is the potential for response bias. To reduce bias, each DHB was de-identified, and responders were instructed to discuss their survey answers with other team members and managers before replying. But it is likely some bias is still present, given that some answers were ‘best-estimates’ and some questions may have been seen as leading questions, such as those enquiring about the flexibility of transfers and willingness to collaborate. Nevertheless, despite the limitations, this study has considerable value in identifying the national shortfalls in the resourcing of care of emerging adults with diabetes.
In conclusion, our study shows that the care of emerging adults with diabetes is significantly under resourced in New Zealand. If we are to address the inequities in the care of emerging adults with diabetes between regions, between paediatric care and emerging adult care, and between Māori and non-Māori, then adequate resourcing is urgently required. In particular, there needs to be a focus on increasing the delivery of care by specialised multidisciplinary teams with dedicated dietitian, psychologist, social worker and kaiāwhina or health navigator team members.
1. Derraik JG, Reed PW, Jefferies, C et al. Increasing incidence and age at diagnosis among children with type 1 diabetes mellitus over a 20 year period in Auckland (New Zealand). PLoS One 2012; 7:e32640.
2. Willis JA, Scott RS, Darlow BA, et al. Incidence of type 1 diabetes mellitus diagnosed before age 20 years in Canterbury, New Zealand over the last 30 years. J Pediatr Endocrinol Metab 2002; 15:637-43.
3. Nathan DM, Bayless M, Cleary P et al. Diabetes control and complications trial/epidemiology of diabetes interventions and complications study at 30 years: advances and contributions. Diabetes. 2013;62(12):3976-86.
4. National Institute for Health and Care Excellence. Diabetes (type 1 and type 2) in children and young people: diagnosis and management: NICE guideline. Published 26 August 2015 Available from www.nice.org.uk/guidance/ng18 [accessed August 4th, 2020]. 2015.
5. Pihoker C, Forsander G, Fantahun B, et al. ISPAD Clinical Practice Consensus Guidelines 2018: The delivery of ambulatory diabetes care to children and adolescents with diabetes. Pediatric Diabetes 2018; 19(S27):84-104.
6. Jefferies C, Owens N and Wiltshire E. Care with children and adolescents with diabetes in New Zealand District Health Boards: Is the clinical resourcing ready for the challenge? New Zealand Medical Journal 2015; 128(1424):20-27.
7. Sandhu SK, Corbett VM, Chepulis L, et al. The prevalence of microvascular complications in Waikato children and youth with type 1 diabetes has reduced since 2003. New Zealand Medical Journal 2020; 133(1510):35-44.
8. Tamatea JAU ,Chepulis L, Wang C, et al. Glycaemic control across the lifespan in a cohort of New Zealand patients with type 1 diabetes mellitus. Internal Medicine Journal 2020 Mar 16; DOI: 10.1111/imj.14816.
9. Cappon G, Vettoretti M, Sparacino G, et al. Continuous Glucose Monitoring Sensors for Diabetes Management: A Review of Technologies and Applications. Diabetes Metabolism Journal 2019; 43(4):383-397.
10. Lyons SK, Libman IM, Sperling MA. Clinical review: Diabetes in the adolescent: transitional issues. Journal of Clinical Endocrinology and Metabolism 2013; 98(12):4639-45.
11. Narasimhan S, Weinstock RS. Youth-onset type 2 diabetes mellitus: lessons learned from the TODAY study. Mayo Clinical Proceedings 2014; 89(6):806-16.
12. Simmons D, Gatland BA, Leakehe L, et al. Ethnic differences in diabetes care in a multiethnic community in New Zealand. Diabetes Research and Clinical Practice 1996; 34:S89-93.
Diabetes is one of the most common chronic disorders in emerging adults (15–25 years of age), and the prevalence of both type 1 diabetes (T1D) and type 2 diabetes (T2D) in New Zealand continues to increase in this age group.1,2 Tight glycaemic control in both T1D and T2D is well known to reduce diabetic microvascular and macrovascular complications and improve survival.3 However, in New Zealand and worldwide, emerging adulthood is typically the period of worst glycaemic control in the lifespan due to the high prevalence of psychosocial stressors and increased insulin resistance of puberty and risk-taking behaviours.4,8 In addition, the glycaemic control of emerging adults with diabetes in New Zealand often deteriorates due to the loss of support from family and friends from moving regions, the failure of support from paediatric services to extend to emerging adulthood and the loss of public funding for insulin pump therapy as glycaemic targets are no longer met. Given the high prevalence of psychosocial stressors and the loss of support, the International Society for Paediatric and Adolescent Diabetes’s (ISPAD’s) guidelines recommend that emerging adults with diabetes receive ambulatory care from a dedicated multidisciplinary team consisting of 0.75 full time equivalent (FTE)/100 patients of an endocrinologist, 1–1.25 FTE/100 patients of a diabetes nurse specialist, 0.5 FTE/100 patients of a dietitian, 0.3 FTE/100 patients of a psychologist and 0.3 FTE/100 patients of a social worker or youth worker.5
Although the multidisciplinary clinical resources caring for children with diabetes in New Zealand in 2012 has been published,6 the national clinical resources available for emerging adults with diabetes is yet unknown. The New Zealand Diabetes Young People Special Interest Group was formed in 2016 with the aim of improving the care of emerging adults with diabetes nationally. Through this group we aimed to characterise the clinical workforce and resources available for the care of emerging adults with diabetes in New Zealand.
In October 2018, lead clinicians or representatives of the New Zealand Diabetes Young People Special Interest Group from each of the 20 district health boards (DHBs) in New Zealand were invited via email to participate in a national survey on the clinical workforce caring for emerging adults with diabetes. These contacts were encouraged to discuss with other team members and service managers as required to complete the survey to determine the numbers of staff caring for emerging adults with diabetes, including endocrinologists, general physicians, general practitioners, nurse practitioners, diabetes nurse specialists, dietitians, psychologists, social workers, youth workers or kaiāwhina/health navigators. Staffing is expressed as number of FTE per 100 patients for comparison. Dietitian, psychology, social work, youth workers and kaiāwhina FTE are defined by whether these staff are dedicated (ie, they are embedded within the diabetes team) or only accessible (ie, they are not embedded within the team). The distinction of dedicated emerging adult diabetes teams and staff were determined by each DHB. Only FTE of staff in dedicated multidisciplinary teams (MDTs) caring for emerging adults with diabetes is presented, because either the numbers of patients weren’t known or it was impossible to separate specific FTE for the care of emerging adults from that of older adults. Indeed, many of the smaller centres without a dedicated MDT did not have a database of their patient numbers, so these MDTs were asked to provide their best estimate of numbers. Clinical nurse specialist FTE in smaller, dedicated MDTs was often over-estimated because their FTE also involved care of children or older adults, so this data are presented as median values.
DHBs were also asked about the age of transition from paediatric services, whether registrars worked within emerging adult teams and whether their service that cares for emerging adults had a database of current patients with or without clinical data (eg, HbA1c), was interested in contributing towards a national database for emerging adults, provided specialist out-of-hours care for their emerging adults with diabetes or had an intervention programme for emerging adults with T2D. The authors confirmed with each survey responder that all information was correct.
Responses were received from all 20 DHBs, who together provide care for approximately 2,300 emerging adults with diabetes in New Zealand. The median age of transfer from paediatric services to emerging adult services was 16 years (range 15–18 years), and all DHBs offered flexibility in their transition depending on clinical circumstances (see Table 1). Emerging adults with diabetes were cared for by a dedicated MDT in twelve DHBs (60%), by general adult diabetes services in five DHBs (25%), by general medicine in two DHBs (10%) and by primary care in one DHB (5%). The median number of emerging adults cared for by a dedicated MDT was 177 (range 40–370), and all MDTs contained at least one endocrinologist and one diabetes nurse specialist (see Table 2). Two dedicated MDTs also contained nurse practitioners, and the FTE per 100 patients for all team members are outlined in Table 2. Eight of the twelve MDTs (67%) had dedicated dietitian tenths, and all DHBs had access to a dietitian. Only three MDTs (25%) had dedicated psychology tenths, and six DHBs had no access to psychology services. Only one MDT (8.5%) had a dedicated social worker, and three MDTs (25%) had a dedicated kaiāwhina or health navigator.
Table 1: Demographic details of the care of emerging adults with diabetes by DHB region.
Table 2: Staffing of dedicated teams caring for emerging adults with diabetes by DHB region.
Only one DHB provided training for registrars in the care of emerging adults with diabetes. Twelve DHBs (60%) had a database of their emerging adults, but only four DHBs (25%) had a database with clinical information such as recent HbA1c levels. All DHBs were keen for a national database, and 18 DHBs (90%) were keen for increased collaboration to improve the care and transfer of emerging adults between DHBs. Only one DHB provided specialist out-of-hours care for their emerging adults with diabetes. No DHB had an intervention programme for emerging adults with T2D.
Although it is pleasing that more than half of DHBs have a dedicated multidisciplinary team caring for emerging adults with diabetes, it is concerning that the staffing of these teams is significantly under resourced compared to international guidelines. Indeed, in comparison to international guidelines, the median FTE/100 patients were more than seven-fold less for endocrinologists, three-fold less for diabetes nurse specialists, ten-fold less for dietitians and thirty-fold less for psychologists.5 Emerging adulthood is recognised as the period with the greatest psychosocial stressors in a person’s lifespan,4 so it’s particularly concerning that only three MDTs had a dedicated psychologist, only one MDT had a dedicated social worker and six DHB teams had no access to a psychologist. It is also concerning that only three MDTs had access to a kaiāwhina or health navigator, when there are marked inequities in diabetic outcomes between Māori and non-Māori in this age group.7
The lack of clinical multidisciplinary resources available for the care of emerging adults with diabetes is further emphasised by comparison to the resources available to paediatric diabetes teams in New Zealand. The median FTE/100 paediatric patients with diabetes for the 20 DHB teams in 2012 was approximately two-fold greater for both endocrinologists and diabetes nurse specialists compared to our data for emerging adults;6 and, similarly to our study, there was a wide variation in medical and nursing staff numbers between DHBs and a scarce number of dedicated dietitians and psychologists within diabetes teams, which highlights the inequities in care between regions, or the ‘postcode lottery’ effect. The wide variation in staffing FTE is likely due, at least in part, to overestimations of FTE in smaller centres, which could be explained by FTE being unable to be differentiated from FTE caring for children or older adults with diabetes. Nevertheless, the reduced clinical resources available to teams caring for emerging adults, compared to the resources available to teams caring for children with diabetes, is worrying given that emerging adulthood is the period of life when it is most difficult to obtain good glycaemic control in New Zealand and worldwide.8 In addition to lower staff numbers, MDTs caring for emerging adults with diabetes in New Zealand often have reduced access to social support services and non-governmental organisations compared to their paediatric colleagues. Notably, emerging adults lose the childhood disability allowance that many families used to fund flash or continuous glucose monitoring, which would significantly improve their glycaemic control.9 Therefore, it is likely that the reduced availability of resources contributes to the deterioration in diabetes outcomes in the transition from paediatric to emerging adult diabetes care.10
The lack of training opportunities, the discharge of patients to primary care in one DHB region and the lack of benchmarking with low database use suggests that the care of emerging adults continues to not be recognised as a subspecialty of diabetes care in New Zealand. Indeed, of particular concern is that no DHB provided an intervention programme for emerging adults with T2D, despite that T2D in emerging adults is greatly increasing in prevalence, and it is a much more aggressive disease than it is in adults.11 Further, the greater burden of complications and diabetes distress from T2D in this age group emphasises the need for their care to be provided by a specialised multidisciplinary diabetes team.4,5 The development of a specialised multidisciplinary team may not be feasible for many smaller DHBs, but access to a psychologist and dietitian with knowledge of diabetes remains important and may require referral to a tertiary centre.
This study has several limitations. Firstly, it is not known whether the ISPAD guidelines are directly applicable to the New Zealand setting, particularly in the ‘ideal and culturally appropriate care’ of Māori and Pacific emerging adults with diabetes. This is important because, although Māori and Pacific emerging adults are less likely to have T1D (the most common type of diabetes in this age group), they are more likely to have less healthy glycaemic control and a greater burden of diabetic complications.8,12 Moreover, it is concerning that many DHBs were unable to provide any ethnicity data for emerging adults for the different types of diabetes and glycaemic control, which is also not currently possible from national diabetes registers. This data is urgently required to identify and then reduce the inequities among emerging adults with diabetes in New Zealand, which may include the development of models of care that differ from those used internationally. A further limitation of this study, as with any survey, is the potential for response bias. To reduce bias, each DHB was de-identified, and responders were instructed to discuss their survey answers with other team members and managers before replying. But it is likely some bias is still present, given that some answers were ‘best-estimates’ and some questions may have been seen as leading questions, such as those enquiring about the flexibility of transfers and willingness to collaborate. Nevertheless, despite the limitations, this study has considerable value in identifying the national shortfalls in the resourcing of care of emerging adults with diabetes.
In conclusion, our study shows that the care of emerging adults with diabetes is significantly under resourced in New Zealand. If we are to address the inequities in the care of emerging adults with diabetes between regions, between paediatric care and emerging adult care, and between Māori and non-Māori, then adequate resourcing is urgently required. In particular, there needs to be a focus on increasing the delivery of care by specialised multidisciplinary teams with dedicated dietitian, psychologist, social worker and kaiāwhina or health navigator team members.
1. Derraik JG, Reed PW, Jefferies, C et al. Increasing incidence and age at diagnosis among children with type 1 diabetes mellitus over a 20 year period in Auckland (New Zealand). PLoS One 2012; 7:e32640.
2. Willis JA, Scott RS, Darlow BA, et al. Incidence of type 1 diabetes mellitus diagnosed before age 20 years in Canterbury, New Zealand over the last 30 years. J Pediatr Endocrinol Metab 2002; 15:637-43.
3. Nathan DM, Bayless M, Cleary P et al. Diabetes control and complications trial/epidemiology of diabetes interventions and complications study at 30 years: advances and contributions. Diabetes. 2013;62(12):3976-86.
4. National Institute for Health and Care Excellence. Diabetes (type 1 and type 2) in children and young people: diagnosis and management: NICE guideline. Published 26 August 2015 Available from www.nice.org.uk/guidance/ng18 [accessed August 4th, 2020]. 2015.
5. Pihoker C, Forsander G, Fantahun B, et al. ISPAD Clinical Practice Consensus Guidelines 2018: The delivery of ambulatory diabetes care to children and adolescents with diabetes. Pediatric Diabetes 2018; 19(S27):84-104.
6. Jefferies C, Owens N and Wiltshire E. Care with children and adolescents with diabetes in New Zealand District Health Boards: Is the clinical resourcing ready for the challenge? New Zealand Medical Journal 2015; 128(1424):20-27.
7. Sandhu SK, Corbett VM, Chepulis L, et al. The prevalence of microvascular complications in Waikato children and youth with type 1 diabetes has reduced since 2003. New Zealand Medical Journal 2020; 133(1510):35-44.
8. Tamatea JAU ,Chepulis L, Wang C, et al. Glycaemic control across the lifespan in a cohort of New Zealand patients with type 1 diabetes mellitus. Internal Medicine Journal 2020 Mar 16; DOI: 10.1111/imj.14816.
9. Cappon G, Vettoretti M, Sparacino G, et al. Continuous Glucose Monitoring Sensors for Diabetes Management: A Review of Technologies and Applications. Diabetes Metabolism Journal 2019; 43(4):383-397.
10. Lyons SK, Libman IM, Sperling MA. Clinical review: Diabetes in the adolescent: transitional issues. Journal of Clinical Endocrinology and Metabolism 2013; 98(12):4639-45.
11. Narasimhan S, Weinstock RS. Youth-onset type 2 diabetes mellitus: lessons learned from the TODAY study. Mayo Clinical Proceedings 2014; 89(6):806-16.
12. Simmons D, Gatland BA, Leakehe L, et al. Ethnic differences in diabetes care in a multiethnic community in New Zealand. Diabetes Research and Clinical Practice 1996; 34:S89-93.
Diabetes is one of the most common chronic disorders in emerging adults (15–25 years of age), and the prevalence of both type 1 diabetes (T1D) and type 2 diabetes (T2D) in New Zealand continues to increase in this age group.1,2 Tight glycaemic control in both T1D and T2D is well known to reduce diabetic microvascular and macrovascular complications and improve survival.3 However, in New Zealand and worldwide, emerging adulthood is typically the period of worst glycaemic control in the lifespan due to the high prevalence of psychosocial stressors and increased insulin resistance of puberty and risk-taking behaviours.4,8 In addition, the glycaemic control of emerging adults with diabetes in New Zealand often deteriorates due to the loss of support from family and friends from moving regions, the failure of support from paediatric services to extend to emerging adulthood and the loss of public funding for insulin pump therapy as glycaemic targets are no longer met. Given the high prevalence of psychosocial stressors and the loss of support, the International Society for Paediatric and Adolescent Diabetes’s (ISPAD’s) guidelines recommend that emerging adults with diabetes receive ambulatory care from a dedicated multidisciplinary team consisting of 0.75 full time equivalent (FTE)/100 patients of an endocrinologist, 1–1.25 FTE/100 patients of a diabetes nurse specialist, 0.5 FTE/100 patients of a dietitian, 0.3 FTE/100 patients of a psychologist and 0.3 FTE/100 patients of a social worker or youth worker.5
Although the multidisciplinary clinical resources caring for children with diabetes in New Zealand in 2012 has been published,6 the national clinical resources available for emerging adults with diabetes is yet unknown. The New Zealand Diabetes Young People Special Interest Group was formed in 2016 with the aim of improving the care of emerging adults with diabetes nationally. Through this group we aimed to characterise the clinical workforce and resources available for the care of emerging adults with diabetes in New Zealand.
In October 2018, lead clinicians or representatives of the New Zealand Diabetes Young People Special Interest Group from each of the 20 district health boards (DHBs) in New Zealand were invited via email to participate in a national survey on the clinical workforce caring for emerging adults with diabetes. These contacts were encouraged to discuss with other team members and service managers as required to complete the survey to determine the numbers of staff caring for emerging adults with diabetes, including endocrinologists, general physicians, general practitioners, nurse practitioners, diabetes nurse specialists, dietitians, psychologists, social workers, youth workers or kaiāwhina/health navigators. Staffing is expressed as number of FTE per 100 patients for comparison. Dietitian, psychology, social work, youth workers and kaiāwhina FTE are defined by whether these staff are dedicated (ie, they are embedded within the diabetes team) or only accessible (ie, they are not embedded within the team). The distinction of dedicated emerging adult diabetes teams and staff were determined by each DHB. Only FTE of staff in dedicated multidisciplinary teams (MDTs) caring for emerging adults with diabetes is presented, because either the numbers of patients weren’t known or it was impossible to separate specific FTE for the care of emerging adults from that of older adults. Indeed, many of the smaller centres without a dedicated MDT did not have a database of their patient numbers, so these MDTs were asked to provide their best estimate of numbers. Clinical nurse specialist FTE in smaller, dedicated MDTs was often over-estimated because their FTE also involved care of children or older adults, so this data are presented as median values.
DHBs were also asked about the age of transition from paediatric services, whether registrars worked within emerging adult teams and whether their service that cares for emerging adults had a database of current patients with or without clinical data (eg, HbA1c), was interested in contributing towards a national database for emerging adults, provided specialist out-of-hours care for their emerging adults with diabetes or had an intervention programme for emerging adults with T2D. The authors confirmed with each survey responder that all information was correct.
Responses were received from all 20 DHBs, who together provide care for approximately 2,300 emerging adults with diabetes in New Zealand. The median age of transfer from paediatric services to emerging adult services was 16 years (range 15–18 years), and all DHBs offered flexibility in their transition depending on clinical circumstances (see Table 1). Emerging adults with diabetes were cared for by a dedicated MDT in twelve DHBs (60%), by general adult diabetes services in five DHBs (25%), by general medicine in two DHBs (10%) and by primary care in one DHB (5%). The median number of emerging adults cared for by a dedicated MDT was 177 (range 40–370), and all MDTs contained at least one endocrinologist and one diabetes nurse specialist (see Table 2). Two dedicated MDTs also contained nurse practitioners, and the FTE per 100 patients for all team members are outlined in Table 2. Eight of the twelve MDTs (67%) had dedicated dietitian tenths, and all DHBs had access to a dietitian. Only three MDTs (25%) had dedicated psychology tenths, and six DHBs had no access to psychology services. Only one MDT (8.5%) had a dedicated social worker, and three MDTs (25%) had a dedicated kaiāwhina or health navigator.
Table 1: Demographic details of the care of emerging adults with diabetes by DHB region.
Table 2: Staffing of dedicated teams caring for emerging adults with diabetes by DHB region.
Only one DHB provided training for registrars in the care of emerging adults with diabetes. Twelve DHBs (60%) had a database of their emerging adults, but only four DHBs (25%) had a database with clinical information such as recent HbA1c levels. All DHBs were keen for a national database, and 18 DHBs (90%) were keen for increased collaboration to improve the care and transfer of emerging adults between DHBs. Only one DHB provided specialist out-of-hours care for their emerging adults with diabetes. No DHB had an intervention programme for emerging adults with T2D.
Although it is pleasing that more than half of DHBs have a dedicated multidisciplinary team caring for emerging adults with diabetes, it is concerning that the staffing of these teams is significantly under resourced compared to international guidelines. Indeed, in comparison to international guidelines, the median FTE/100 patients were more than seven-fold less for endocrinologists, three-fold less for diabetes nurse specialists, ten-fold less for dietitians and thirty-fold less for psychologists.5 Emerging adulthood is recognised as the period with the greatest psychosocial stressors in a person’s lifespan,4 so it’s particularly concerning that only three MDTs had a dedicated psychologist, only one MDT had a dedicated social worker and six DHB teams had no access to a psychologist. It is also concerning that only three MDTs had access to a kaiāwhina or health navigator, when there are marked inequities in diabetic outcomes between Māori and non-Māori in this age group.7
The lack of clinical multidisciplinary resources available for the care of emerging adults with diabetes is further emphasised by comparison to the resources available to paediatric diabetes teams in New Zealand. The median FTE/100 paediatric patients with diabetes for the 20 DHB teams in 2012 was approximately two-fold greater for both endocrinologists and diabetes nurse specialists compared to our data for emerging adults;6 and, similarly to our study, there was a wide variation in medical and nursing staff numbers between DHBs and a scarce number of dedicated dietitians and psychologists within diabetes teams, which highlights the inequities in care between regions, or the ‘postcode lottery’ effect. The wide variation in staffing FTE is likely due, at least in part, to overestimations of FTE in smaller centres, which could be explained by FTE being unable to be differentiated from FTE caring for children or older adults with diabetes. Nevertheless, the reduced clinical resources available to teams caring for emerging adults, compared to the resources available to teams caring for children with diabetes, is worrying given that emerging adulthood is the period of life when it is most difficult to obtain good glycaemic control in New Zealand and worldwide.8 In addition to lower staff numbers, MDTs caring for emerging adults with diabetes in New Zealand often have reduced access to social support services and non-governmental organisations compared to their paediatric colleagues. Notably, emerging adults lose the childhood disability allowance that many families used to fund flash or continuous glucose monitoring, which would significantly improve their glycaemic control.9 Therefore, it is likely that the reduced availability of resources contributes to the deterioration in diabetes outcomes in the transition from paediatric to emerging adult diabetes care.10
The lack of training opportunities, the discharge of patients to primary care in one DHB region and the lack of benchmarking with low database use suggests that the care of emerging adults continues to not be recognised as a subspecialty of diabetes care in New Zealand. Indeed, of particular concern is that no DHB provided an intervention programme for emerging adults with T2D, despite that T2D in emerging adults is greatly increasing in prevalence, and it is a much more aggressive disease than it is in adults.11 Further, the greater burden of complications and diabetes distress from T2D in this age group emphasises the need for their care to be provided by a specialised multidisciplinary diabetes team.4,5 The development of a specialised multidisciplinary team may not be feasible for many smaller DHBs, but access to a psychologist and dietitian with knowledge of diabetes remains important and may require referral to a tertiary centre.
This study has several limitations. Firstly, it is not known whether the ISPAD guidelines are directly applicable to the New Zealand setting, particularly in the ‘ideal and culturally appropriate care’ of Māori and Pacific emerging adults with diabetes. This is important because, although Māori and Pacific emerging adults are less likely to have T1D (the most common type of diabetes in this age group), they are more likely to have less healthy glycaemic control and a greater burden of diabetic complications.8,12 Moreover, it is concerning that many DHBs were unable to provide any ethnicity data for emerging adults for the different types of diabetes and glycaemic control, which is also not currently possible from national diabetes registers. This data is urgently required to identify and then reduce the inequities among emerging adults with diabetes in New Zealand, which may include the development of models of care that differ from those used internationally. A further limitation of this study, as with any survey, is the potential for response bias. To reduce bias, each DHB was de-identified, and responders were instructed to discuss their survey answers with other team members and managers before replying. But it is likely some bias is still present, given that some answers were ‘best-estimates’ and some questions may have been seen as leading questions, such as those enquiring about the flexibility of transfers and willingness to collaborate. Nevertheless, despite the limitations, this study has considerable value in identifying the national shortfalls in the resourcing of care of emerging adults with diabetes.
In conclusion, our study shows that the care of emerging adults with diabetes is significantly under resourced in New Zealand. If we are to address the inequities in the care of emerging adults with diabetes between regions, between paediatric care and emerging adult care, and between Māori and non-Māori, then adequate resourcing is urgently required. In particular, there needs to be a focus on increasing the delivery of care by specialised multidisciplinary teams with dedicated dietitian, psychologist, social worker and kaiāwhina or health navigator team members.
1. Derraik JG, Reed PW, Jefferies, C et al. Increasing incidence and age at diagnosis among children with type 1 diabetes mellitus over a 20 year period in Auckland (New Zealand). PLoS One 2012; 7:e32640.
2. Willis JA, Scott RS, Darlow BA, et al. Incidence of type 1 diabetes mellitus diagnosed before age 20 years in Canterbury, New Zealand over the last 30 years. J Pediatr Endocrinol Metab 2002; 15:637-43.
3. Nathan DM, Bayless M, Cleary P et al. Diabetes control and complications trial/epidemiology of diabetes interventions and complications study at 30 years: advances and contributions. Diabetes. 2013;62(12):3976-86.
4. National Institute for Health and Care Excellence. Diabetes (type 1 and type 2) in children and young people: diagnosis and management: NICE guideline. Published 26 August 2015 Available from www.nice.org.uk/guidance/ng18 [accessed August 4th, 2020]. 2015.
5. Pihoker C, Forsander G, Fantahun B, et al. ISPAD Clinical Practice Consensus Guidelines 2018: The delivery of ambulatory diabetes care to children and adolescents with diabetes. Pediatric Diabetes 2018; 19(S27):84-104.
6. Jefferies C, Owens N and Wiltshire E. Care with children and adolescents with diabetes in New Zealand District Health Boards: Is the clinical resourcing ready for the challenge? New Zealand Medical Journal 2015; 128(1424):20-27.
7. Sandhu SK, Corbett VM, Chepulis L, et al. The prevalence of microvascular complications in Waikato children and youth with type 1 diabetes has reduced since 2003. New Zealand Medical Journal 2020; 133(1510):35-44.
8. Tamatea JAU ,Chepulis L, Wang C, et al. Glycaemic control across the lifespan in a cohort of New Zealand patients with type 1 diabetes mellitus. Internal Medicine Journal 2020 Mar 16; DOI: 10.1111/imj.14816.
9. Cappon G, Vettoretti M, Sparacino G, et al. Continuous Glucose Monitoring Sensors for Diabetes Management: A Review of Technologies and Applications. Diabetes Metabolism Journal 2019; 43(4):383-397.
10. Lyons SK, Libman IM, Sperling MA. Clinical review: Diabetes in the adolescent: transitional issues. Journal of Clinical Endocrinology and Metabolism 2013; 98(12):4639-45.
11. Narasimhan S, Weinstock RS. Youth-onset type 2 diabetes mellitus: lessons learned from the TODAY study. Mayo Clinical Proceedings 2014; 89(6):806-16.
12. Simmons D, Gatland BA, Leakehe L, et al. Ethnic differences in diabetes care in a multiethnic community in New Zealand. Diabetes Research and Clinical Practice 1996; 34:S89-93.
Diabetes is one of the most common chronic disorders in emerging adults (15–25 years of age), and the prevalence of both type 1 diabetes (T1D) and type 2 diabetes (T2D) in New Zealand continues to increase in this age group.1,2 Tight glycaemic control in both T1D and T2D is well known to reduce diabetic microvascular and macrovascular complications and improve survival.3 However, in New Zealand and worldwide, emerging adulthood is typically the period of worst glycaemic control in the lifespan due to the high prevalence of psychosocial stressors and increased insulin resistance of puberty and risk-taking behaviours.4,8 In addition, the glycaemic control of emerging adults with diabetes in New Zealand often deteriorates due to the loss of support from family and friends from moving regions, the failure of support from paediatric services to extend to emerging adulthood and the loss of public funding for insulin pump therapy as glycaemic targets are no longer met. Given the high prevalence of psychosocial stressors and the loss of support, the International Society for Paediatric and Adolescent Diabetes’s (ISPAD’s) guidelines recommend that emerging adults with diabetes receive ambulatory care from a dedicated multidisciplinary team consisting of 0.75 full time equivalent (FTE)/100 patients of an endocrinologist, 1–1.25 FTE/100 patients of a diabetes nurse specialist, 0.5 FTE/100 patients of a dietitian, 0.3 FTE/100 patients of a psychologist and 0.3 FTE/100 patients of a social worker or youth worker.5
Although the multidisciplinary clinical resources caring for children with diabetes in New Zealand in 2012 has been published,6 the national clinical resources available for emerging adults with diabetes is yet unknown. The New Zealand Diabetes Young People Special Interest Group was formed in 2016 with the aim of improving the care of emerging adults with diabetes nationally. Through this group we aimed to characterise the clinical workforce and resources available for the care of emerging adults with diabetes in New Zealand.
In October 2018, lead clinicians or representatives of the New Zealand Diabetes Young People Special Interest Group from each of the 20 district health boards (DHBs) in New Zealand were invited via email to participate in a national survey on the clinical workforce caring for emerging adults with diabetes. These contacts were encouraged to discuss with other team members and service managers as required to complete the survey to determine the numbers of staff caring for emerging adults with diabetes, including endocrinologists, general physicians, general practitioners, nurse practitioners, diabetes nurse specialists, dietitians, psychologists, social workers, youth workers or kaiāwhina/health navigators. Staffing is expressed as number of FTE per 100 patients for comparison. Dietitian, psychology, social work, youth workers and kaiāwhina FTE are defined by whether these staff are dedicated (ie, they are embedded within the diabetes team) or only accessible (ie, they are not embedded within the team). The distinction of dedicated emerging adult diabetes teams and staff were determined by each DHB. Only FTE of staff in dedicated multidisciplinary teams (MDTs) caring for emerging adults with diabetes is presented, because either the numbers of patients weren’t known or it was impossible to separate specific FTE for the care of emerging adults from that of older adults. Indeed, many of the smaller centres without a dedicated MDT did not have a database of their patient numbers, so these MDTs were asked to provide their best estimate of numbers. Clinical nurse specialist FTE in smaller, dedicated MDTs was often over-estimated because their FTE also involved care of children or older adults, so this data are presented as median values.
DHBs were also asked about the age of transition from paediatric services, whether registrars worked within emerging adult teams and whether their service that cares for emerging adults had a database of current patients with or without clinical data (eg, HbA1c), was interested in contributing towards a national database for emerging adults, provided specialist out-of-hours care for their emerging adults with diabetes or had an intervention programme for emerging adults with T2D. The authors confirmed with each survey responder that all information was correct.
Responses were received from all 20 DHBs, who together provide care for approximately 2,300 emerging adults with diabetes in New Zealand. The median age of transfer from paediatric services to emerging adult services was 16 years (range 15–18 years), and all DHBs offered flexibility in their transition depending on clinical circumstances (see Table 1). Emerging adults with diabetes were cared for by a dedicated MDT in twelve DHBs (60%), by general adult diabetes services in five DHBs (25%), by general medicine in two DHBs (10%) and by primary care in one DHB (5%). The median number of emerging adults cared for by a dedicated MDT was 177 (range 40–370), and all MDTs contained at least one endocrinologist and one diabetes nurse specialist (see Table 2). Two dedicated MDTs also contained nurse practitioners, and the FTE per 100 patients for all team members are outlined in Table 2. Eight of the twelve MDTs (67%) had dedicated dietitian tenths, and all DHBs had access to a dietitian. Only three MDTs (25%) had dedicated psychology tenths, and six DHBs had no access to psychology services. Only one MDT (8.5%) had a dedicated social worker, and three MDTs (25%) had a dedicated kaiāwhina or health navigator.
Table 1: Demographic details of the care of emerging adults with diabetes by DHB region.
Table 2: Staffing of dedicated teams caring for emerging adults with diabetes by DHB region.
Only one DHB provided training for registrars in the care of emerging adults with diabetes. Twelve DHBs (60%) had a database of their emerging adults, but only four DHBs (25%) had a database with clinical information such as recent HbA1c levels. All DHBs were keen for a national database, and 18 DHBs (90%) were keen for increased collaboration to improve the care and transfer of emerging adults between DHBs. Only one DHB provided specialist out-of-hours care for their emerging adults with diabetes. No DHB had an intervention programme for emerging adults with T2D.
Although it is pleasing that more than half of DHBs have a dedicated multidisciplinary team caring for emerging adults with diabetes, it is concerning that the staffing of these teams is significantly under resourced compared to international guidelines. Indeed, in comparison to international guidelines, the median FTE/100 patients were more than seven-fold less for endocrinologists, three-fold less for diabetes nurse specialists, ten-fold less for dietitians and thirty-fold less for psychologists.5 Emerging adulthood is recognised as the period with the greatest psychosocial stressors in a person’s lifespan,4 so it’s particularly concerning that only three MDTs had a dedicated psychologist, only one MDT had a dedicated social worker and six DHB teams had no access to a psychologist. It is also concerning that only three MDTs had access to a kaiāwhina or health navigator, when there are marked inequities in diabetic outcomes between Māori and non-Māori in this age group.7
The lack of clinical multidisciplinary resources available for the care of emerging adults with diabetes is further emphasised by comparison to the resources available to paediatric diabetes teams in New Zealand. The median FTE/100 paediatric patients with diabetes for the 20 DHB teams in 2012 was approximately two-fold greater for both endocrinologists and diabetes nurse specialists compared to our data for emerging adults;6 and, similarly to our study, there was a wide variation in medical and nursing staff numbers between DHBs and a scarce number of dedicated dietitians and psychologists within diabetes teams, which highlights the inequities in care between regions, or the ‘postcode lottery’ effect. The wide variation in staffing FTE is likely due, at least in part, to overestimations of FTE in smaller centres, which could be explained by FTE being unable to be differentiated from FTE caring for children or older adults with diabetes. Nevertheless, the reduced clinical resources available to teams caring for emerging adults, compared to the resources available to teams caring for children with diabetes, is worrying given that emerging adulthood is the period of life when it is most difficult to obtain good glycaemic control in New Zealand and worldwide.8 In addition to lower staff numbers, MDTs caring for emerging adults with diabetes in New Zealand often have reduced access to social support services and non-governmental organisations compared to their paediatric colleagues. Notably, emerging adults lose the childhood disability allowance that many families used to fund flash or continuous glucose monitoring, which would significantly improve their glycaemic control.9 Therefore, it is likely that the reduced availability of resources contributes to the deterioration in diabetes outcomes in the transition from paediatric to emerging adult diabetes care.10
The lack of training opportunities, the discharge of patients to primary care in one DHB region and the lack of benchmarking with low database use suggests that the care of emerging adults continues to not be recognised as a subspecialty of diabetes care in New Zealand. Indeed, of particular concern is that no DHB provided an intervention programme for emerging adults with T2D, despite that T2D in emerging adults is greatly increasing in prevalence, and it is a much more aggressive disease than it is in adults.11 Further, the greater burden of complications and diabetes distress from T2D in this age group emphasises the need for their care to be provided by a specialised multidisciplinary diabetes team.4,5 The development of a specialised multidisciplinary team may not be feasible for many smaller DHBs, but access to a psychologist and dietitian with knowledge of diabetes remains important and may require referral to a tertiary centre.
This study has several limitations. Firstly, it is not known whether the ISPAD guidelines are directly applicable to the New Zealand setting, particularly in the ‘ideal and culturally appropriate care’ of Māori and Pacific emerging adults with diabetes. This is important because, although Māori and Pacific emerging adults are less likely to have T1D (the most common type of diabetes in this age group), they are more likely to have less healthy glycaemic control and a greater burden of diabetic complications.8,12 Moreover, it is concerning that many DHBs were unable to provide any ethnicity data for emerging adults for the different types of diabetes and glycaemic control, which is also not currently possible from national diabetes registers. This data is urgently required to identify and then reduce the inequities among emerging adults with diabetes in New Zealand, which may include the development of models of care that differ from those used internationally. A further limitation of this study, as with any survey, is the potential for response bias. To reduce bias, each DHB was de-identified, and responders were instructed to discuss their survey answers with other team members and managers before replying. But it is likely some bias is still present, given that some answers were ‘best-estimates’ and some questions may have been seen as leading questions, such as those enquiring about the flexibility of transfers and willingness to collaborate. Nevertheless, despite the limitations, this study has considerable value in identifying the national shortfalls in the resourcing of care of emerging adults with diabetes.
In conclusion, our study shows that the care of emerging adults with diabetes is significantly under resourced in New Zealand. If we are to address the inequities in the care of emerging adults with diabetes between regions, between paediatric care and emerging adult care, and between Māori and non-Māori, then adequate resourcing is urgently required. In particular, there needs to be a focus on increasing the delivery of care by specialised multidisciplinary teams with dedicated dietitian, psychologist, social worker and kaiāwhina or health navigator team members.
1. Derraik JG, Reed PW, Jefferies, C et al. Increasing incidence and age at diagnosis among children with type 1 diabetes mellitus over a 20 year period in Auckland (New Zealand). PLoS One 2012; 7:e32640.
2. Willis JA, Scott RS, Darlow BA, et al. Incidence of type 1 diabetes mellitus diagnosed before age 20 years in Canterbury, New Zealand over the last 30 years. J Pediatr Endocrinol Metab 2002; 15:637-43.
3. Nathan DM, Bayless M, Cleary P et al. Diabetes control and complications trial/epidemiology of diabetes interventions and complications study at 30 years: advances and contributions. Diabetes. 2013;62(12):3976-86.
4. National Institute for Health and Care Excellence. Diabetes (type 1 and type 2) in children and young people: diagnosis and management: NICE guideline. Published 26 August 2015 Available from www.nice.org.uk/guidance/ng18 [accessed August 4th, 2020]. 2015.
5. Pihoker C, Forsander G, Fantahun B, et al. ISPAD Clinical Practice Consensus Guidelines 2018: The delivery of ambulatory diabetes care to children and adolescents with diabetes. Pediatric Diabetes 2018; 19(S27):84-104.
6. Jefferies C, Owens N and Wiltshire E. Care with children and adolescents with diabetes in New Zealand District Health Boards: Is the clinical resourcing ready for the challenge? New Zealand Medical Journal 2015; 128(1424):20-27.
7. Sandhu SK, Corbett VM, Chepulis L, et al. The prevalence of microvascular complications in Waikato children and youth with type 1 diabetes has reduced since 2003. New Zealand Medical Journal 2020; 133(1510):35-44.
8. Tamatea JAU ,Chepulis L, Wang C, et al. Glycaemic control across the lifespan in a cohort of New Zealand patients with type 1 diabetes mellitus. Internal Medicine Journal 2020 Mar 16; DOI: 10.1111/imj.14816.
9. Cappon G, Vettoretti M, Sparacino G, et al. Continuous Glucose Monitoring Sensors for Diabetes Management: A Review of Technologies and Applications. Diabetes Metabolism Journal 2019; 43(4):383-397.
10. Lyons SK, Libman IM, Sperling MA. Clinical review: Diabetes in the adolescent: transitional issues. Journal of Clinical Endocrinology and Metabolism 2013; 98(12):4639-45.
11. Narasimhan S, Weinstock RS. Youth-onset type 2 diabetes mellitus: lessons learned from the TODAY study. Mayo Clinical Proceedings 2014; 89(6):806-16.
12. Simmons D, Gatland BA, Leakehe L, et al. Ethnic differences in diabetes care in a multiethnic community in New Zealand. Diabetes Research and Clinical Practice 1996; 34:S89-93.
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