Pediatric Annals

CME Article 

Transition of Care for Young Adults with Type 1 and 2 Diabetes

Norma Van Walleghem, MSc, RD, CDE; Catherine A. MacDonald, BFA; Heather J. Dean, MD, FRCPC

Abstract

CME Educational Objectives

  1. Detail the current transition services for youth with type 1 diabetes mellitus (T1DM) developed in Manitoba, Canada.

  2. Discuss new directions for this service as it has evolved to include children with type 2 diabetes mellitus (T2DM).

  3. Report the development of new approaches to children with T2DM, including surveillance in their home communities and inclusion of infants born to mothers with T2DM.

The arranging of an effective transition to adult medical services is a necessary part of caring for youth with chronic medical conditions. Transition comes at a time of intense social pressures in addition to physical and lifestyle changes, all in the context of waning parental influence and involvement. Adolescents and young adults with type 1 diabetes (T1DM) have unique and specialized needs that differ from those of children and older adults with this disease.1 They are faced with a transition that forces them to navigate an adult-oriented health system that differs in many ways from the pediatric system, including philosophy; coordination and integration with diabetes educators; psychosocial expertise and support; and staffing levels.

While many young adults with T1DM successfully establish support and ongoing follow-up after transfer, up to 50% of this population has reported difficulties.2 Longitudinal cohort studies have found that despite intensive educational and management interventions, many emerging adults do not successfully achieve optimal diabetes self-care. Those with the poorest metabolic control are at the highest risk for dropping out of care completely.3–6

Abstract

CME Educational Objectives

  1. Detail the current transition services for youth with type 1 diabetes mellitus (T1DM) developed in Manitoba, Canada.

  2. Discuss new directions for this service as it has evolved to include children with type 2 diabetes mellitus (T2DM).

  3. Report the development of new approaches to children with T2DM, including surveillance in their home communities and inclusion of infants born to mothers with T2DM.

The arranging of an effective transition to adult medical services is a necessary part of caring for youth with chronic medical conditions. Transition comes at a time of intense social pressures in addition to physical and lifestyle changes, all in the context of waning parental influence and involvement. Adolescents and young adults with type 1 diabetes (T1DM) have unique and specialized needs that differ from those of children and older adults with this disease.1 They are faced with a transition that forces them to navigate an adult-oriented health system that differs in many ways from the pediatric system, including philosophy; coordination and integration with diabetes educators; psychosocial expertise and support; and staffing levels.

While many young adults with T1DM successfully establish support and ongoing follow-up after transfer, up to 50% of this population has reported difficulties.2 Longitudinal cohort studies have found that despite intensive educational and management interventions, many emerging adults do not successfully achieve optimal diabetes self-care. Those with the poorest metabolic control are at the highest risk for dropping out of care completely.3–6

There is an overwhelming consensus for the development of comprehensive, age-appropriate systems of health services delivery to ensure successful transition and to respond to the unique needs of young adults living with diabetes.9

To do so requires methods to evaluate and report outcomes of newer models of transition-related services, in order to sustain the programs that have been proven successful, and methods to evaluate the application of successful programs for other chronic diseases and subpopulations. For example, it would be helpful to determine if a successful transition model for youth with T1DM will be equally successful for youth with type 2 diabetes (T2DM).

The purpose of this report is to detail the current transition services for youth with T1DM offered by a successful program in Manitoba, Canada, and to discuss new directions for these services; and to report the development of new approaches to support youth with T2DM transitioning from pediatric diabetes services to comprehensive care, education, and surveillance in their home communities.

Pediatric Diabetes Care

In Winnipeg, Manitoba, Canada, where this study was conducted, all youth with diabetes are followed from diagnosis to age 18 years in a coordinated, family-centered, integrated program of care, education, and support in a program called the Diabetes Education Resource for Children and Adolescents (DER-CA). The DER-CA was established in 1985 as the first regional pediatric program in Canada funded outside of a global hospital budget, and it is located at the Children’s Hospital of Winnipeg.

The DER-CA is also the pediatric referral center for youth with diabetes in central Canada, including northwestern Ontario. The program has a case management system and single reporting structure to a program director. The DER-CA team currently includes two diabetes nurse educators, a clinical nurse specialist, two dietitians, a social worker, four pediatric endocrinologists and five support staff.

The caseload as of May 2011 included 508 youth with T1DM, who were predominately white; and 207 youth with T2DM, who were predominately mixed-race or indigenous. All youth in the system are transferred to adult care at age 18 years. The Table (see page e19) shows the number of youth and young adults involved in the relevant diabetes programs.

Youth and Young Adults Registered in Diabetes Programs in Manitoba, Canada

Table: Youth and Young Adults Registered in Diabetes Programs in Manitoba, Canada

The Maestro Project Phase 1

The Maestro Project began in August 2002 to provide a unique model for transition support and patient navigation strategies for youth transferring from the DER-CA to adult diabetes specialty services in Manitoba. The successes and challenges of the Maestro Project for youth with T1DM have been published.10–12

The goals of the Maestro Project are to increase the rate of medical follow-up and reduce morbidity and mortality from the acute and chronic complications of diabetes. The project coordinator or “patient navigator” is not a health care provider, but maintains telephone and email contact with the emerging adult patients to provide support and identify barriers to accessing appropriate health care services in the adult diabetes system. The navigator works closely with community-based resource centers involved in diabetes education to facilitate follow-up and referrals and to improve communication.

The Young Adult Diabetes Working Group was formed as an ad hoc advisory body that served as a steering committee for the Maestro Project and provided expert opinion on service provision for youth and emerging adults with T1DM in the region. The group conducted focus groups with emerging adults to assess their perceived needs and held facilitated discussion sessions with stakeholders in the diabetes professional community to establish support and direction for service delivery for young people and to strengthen collaborative practices.

Based on this needs assessment, the Maestro Project initiated several alternate methods of service delivery for emerging adults. There is a casual, evening drop-in group every 4 to 6 weeks and educational events. These events are designed to encourage socialization with peers and to introduce and facilitate relationships with community diabetes health professionals. They are an opportunity for emerging adults to ask questions and receive expert information about self-management, pregnancy issues, research, new technologies and other relevant information in a relaxed, non-threatening, non-medical environment.

Results

When the Maestro Project began in 2002, 25% to 35% of young adults with T1DM were defaulting from medical care within the first year after graduating from the pediatric diabetes program. After 2 years of a targeted transition support service, this number was reduced to 11%.

During the past decade, the number of youth from the DER-CA with T1DM transferring to adult care remained steady at 60 to 70 per year. Participant rates in the Maestro Project have remained high during the past 10 years; approximately 95% of those eligible are involved in the program.

Program Integration

To be effective, a transition support program needs to have overlap between both pediatric and adult services; each system must be able to recognize the differences in the other’s health care delivery model, while still working collaboratively.13 The Maestro Project is an example of this collaborative practice and attributes the following reasons to its success:

  1. The patient navigator model helps establish a relationship with pediatric patients long before they will need to transition and provides targeted transition education in the DER-CA clinic. The patient navigator started attending pediatric clinics in 2004 to meet with 16- to 17-year-olds and their families to introduce the program and obtain their consent for participation. These youth were enrolled earlier in the Maestro Project and invited to participate in program events before formal referral at age 18 years.

  2. The patient navigator was instrumental to the improvement of communication between pediatric and adult services and to an increased understanding of the differences in cultures of care. The DER-CA team, along with the navigator, meets every 6 months with an adult diabetes education team from a local community-based diabetes center. An emerging adult-specific T1DM clinic was created at this center as a joint partnership between pediatric and adult endocrinology.

  3. The development of this dedicated diabetes clinic helps provide seamless transition between pediatric and adult diabetes care. The clinic offers a coordinated, interdisciplinary approach to diabetes self-management education with an adult endocrinologist, nurses and dietitians, and includes onsite access to a mental health professional and point-of-care laboratory testing. There is optimism that this will lead to not only better long-term health outcomes, but also for the potential benefit for research partnerships, longitudinal cohort studies and inter-professional collaborations in the future.

Application to T2DM

As the number of children with T2DM has increased dramatically during the past decade, systems must respond quickly and creatively to meet their needs while maintaining the highest quality and standard of care for the population of youth and emerging adults with T1DM. As such, a second phase of the Maestro Project has been initiated, in which most continuous programming and social support for young people with T1DM has been naturally diverted to the Young Adult Diabetes Clinic.

The patient navigator remains an available phone/email support service to young people with T1DM transferring to adult care from the DER-CA and serves as liaison between emerging adults and adult services to assist with transitional issues. The navigator will continue to act as a resource for the DER-CA team, meet with youth age 16 to 17 years and their families, and maintain the T1DM Maestro database for ongoing evaluation of medical outcomes.

The Maestro Project Phase 2

It is vital that any transition service have the capacity to meet the ever-changing needs of emerging adults (technologically, psychosocially, and medically) and to accommodate the increasing demands placed on health care systems. Transition programs also benefit from clear direction, strong leadership, and influential champions. With this in mind, the Maestro Project expanded its focus to consider the needs of youth and emerging adults with T2DM during the transition period, known as Maestro II.

T2DM was first described in Canadian Oji-Cree youth in 1983.14 The first prospective, national, population-based surveillance study in Canada reported the observed minimum incidence rate of T2DM was 1.54 cases per 100,000 children.15 The authors noted that the rate was “higher than expected’ with important regional variation; they found a 20 times higher incident rate in Manitoba compared with every other province in Canada.

This study also showed that 37% of youth had at least one comorbidity; 13% had three or more comorbidities at diagnosis (ie, obesity, hypertension, dyslipidemia, polycystic ovary disease, nonalcoholic fatty liver disease and nephropathy).

In youth with T2DM, the long duration of disease resulting from early diagnosis is associated with severe and early-onset microvascular complications. Children with T2DM have a two to three times higher risk of diabetic nephropathy than children with T1DM and a four times higher risk for any measure of chronic kidney disease. Overall survival analysis 10 years after diagnosis is 91.4% in children with T2DM, compared with 99.5% in children with T1DM and 100% in children without diabetes. Renal survival is only 55% after 20 years in youth with T2DM.16

Increased T2DM Trend

The face of diabetes in children has changed dramatically in Manitoba during the past 25 years. The number of new cases of T2DM referred to the DER-CA has increased from four new cases in 1986 to 67 new cases in 2010. T2DM now accounts for more than 50% of the children with new-onset diabetes referred to the DER-CA (unpublished clinic data). Currently, the DER-CA follows 207 youth with T2DM, of whom approximately 90% are self-declared First Nations.

The pediatric T2DM program has expanded in response to the needs of this population; new clinical partnerships have been developed for retinal eye screening, dental hygiene assessments, on-site foot care and physical activity counseling, as well as new collaborations with pediatric specialty teams, including nephrology, gastroenterology, respirology, psychiatry, and obstetrics.

The DER-CA began an outreach program to northern Manitoba, including to isolated fly-in communities, coordinated with the regional adult diabetes teams. This was started in response to the need for innovative systems for service delivery and professional development for community health professionals. Outreach clinics include community activities such as grocery store tours, appearances on radio or television call-in shows, and visits to recreation centers and schools.

Unique T2DM Transition Needs

The number of youth with T2DM transferring to adult care at the DER-CA increased from eight in 2001 to 42 in 2009. Although the age-related challenges of transition to adult care are similar for youth with T1DM and T2DM, the clinical complexity, the different cultural and social characteristics, and the aggressive progression of life-threatening complications in emerging adult life for T2DM requires a different approach to transition. One of the significant challenges of working with this patient population is the distance both geographically and culturally between the Winnipeg DER-CA office and their home communities in rural and remote northern Manitoba. Manitoba is 250,946 square miles, twice the size of the United Kingdom. Manitoba has 63 First Nations, almost half of which have children with T2DM. Twenty-three First Nations are not accessible by an all-weather road (fly-in only). There are five First Nations linguistic groups in Manitoba: Cree, Ojibway, Dakota, Ojibway-Cree and Dene.

Cultural Challenges

With the launch of the Maestro Project in 2002, a T2DM database was created for graduates of the DER-CA program. A project assistant with First Nations heritage was hired and for the first 3 years, this “cultural broker” registered all youth with T2DM transferring from the DER-CA and contacted them every 2 months to provide support and systems navigation.

From spring 2005 to fall 2010, this position was maintained primarily on a part-time basis by summer students. However, lack of familiarity with the specific systems of care and support available to emerging adults with T2DM in each of the home communities; the consistency and availability of these programs; the extent to which young people are engaging with them; and the high mobility of these young people from home to urban areas are long-standing challenges. Coordinating educational or social events and providing assistance for referrals to health care professionals has thus far been not feasible for the young adults with T2DM.

For Maestro II to provide an effective transition service for First Nations youth, an intimate understanding of how each community’s medical and socioeconomic systems function is vital. This will require commitment for frequent travel (partnering with the DER-CA outreach program) to network within northern communities, to develop connections with local resources and to create sustainable programming to provide smooth and effective transition from pediatric care, using multiple models unique to each community.

Maestro II and the DER-CA team have recognized the urgent need for a life-cycle approach to care, education, support and research regarding T2DM in children. One example of this is the Next Generation Birth Cohort Study, which began in 2003 to establish long-term surveillance of the offspring of First Nations parents who were diagnosed with T2DM as youth; followed at the DER-CA; and were enrolled in Maestro II after transfer to adult care.17

The long-term goal of this study is prevention of obesity and T2DM in these offspring. As of September 2011, 127 offspring of 53 parents in Maestro II were enrolled. There are now 13 offspring with T2DM diagnosed at a mean age of 10 years (range 6 to 11). All of these offspring are obese, and all have a unique high-risk genotype of the HNF1-alpha gene associated with low insulin secretion. The Next Generation birth cohort may provide critical insights into mechanisms and risks to explain the high incidence of T2DM in the local population.

The Maestro II patient navigator is vital to maintaining contact with the parents to enroll new offspring.

Each participant’s HNF1-alpha genotype and a few selected long-term outcomes are entered into the DER-CA database, including the number of hospitalizations; and the number of pregnancies, pregnancy losses, and live births. These self-reported medical outcomes will be used to describe the frequency of acute complications in participants over time. More detailed cardiovascular outcomes and end-stage diabetic complications will be collected by local site investigators of the multicentre Pan Canadian iCARE Study, funded by the Canadian Diabetes Association and the Canadian Institute of Health Research.

Preliminary Results

Three hundred eighty-seven emerging adults with T2DM were registered in the Maestro II database from 2002 to 2011. Thirty three (8.5%) were not responsive despite repeated efforts to contact by letter, telephone or email. Eighty-two (21.2%) are now older than 25 years of age, and have thus “graduated” from Maestro II. By the end of December 2011, 250 (92.3%) young people aged 18 to 25 years were participating in Maestro II.

There were 16 deaths from 2002 to 2011 in Maestro II participants aged 20 to 28 years. Three had a genetic syndrome with morbid obesity (Prader-Willi syndrome). Five (35%) of the deaths were related to T2DM, including three from diabetic ketoacidosis, one from a “diabetes-related coma,” and one from suicide.

Conclusions

Tracking medical surveillance, short-term outcomes and participation in Maestro II will help to assess the feasibility and acceptability of this model of transitional support for emerging adults with T2DM diabetes. The testing of different models for successful transition to adult care in this population is now feasible. The next phase is more formal evaluation of medical outcomes.

Implementing culturally appropriate strategies for effective support during transition from pediatric to adult diabetes care is crucial to understanding the unique factors involved in the development of T2DM, particularly in high-risk cultural subsets, such as the Manitoba First Nations. The rapid progression of chronic complications and the perpetuated increased risk for diabetes to offspring can also be better understood. This data then can be used create health care models, both in Canada and elsewhere, to meet the unique needs of each cultural group, in the context of an integrated health care strategy.

References

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Despite improvements in the life expectancy of children with T1DM over recent decades, there is still significant mortality in childhood compared with the general population.7 The Public Health Agency of Canada reported that the mortality rate for young adults with diabetes aged 20 to 29 years was six times greater than their age-matched peers for 2006 through 2007. Those with diabetes also have a significantly decreased life expectancy; an 8- and 9-year reduction in lifespan for men and women, respectively.8
Authors

Norma Van Walleghem, MSc, RD, CDE, is a Dietician Educator at the Diabetes Education Resource for Children and Adolescents., Winnipeg, Manitoba, Canada. Catherine A. MacDonald, BFA, is a Transition Coordinator, Building Connections: The Maestro Project, Winnipeg Regional Health Authority, Winnipeg, Manitoba, Canada. Heather J. Dean, MD, FRCPC, is a Professor, Department of Pediatrics, Section of Endocrinology & Metabolism, University of Manitoba, Winnipeg, Manitoba, Canada.

Address correspondence to: Norma Van Walleghem, MSc, RD, CDE, fax: 204-787-1655; email: .nvanwalleghem@hsc.mb.ca

10.3928/00904481-20120426-08

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