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Youth with diabetes and their parents' perspectives on transition care from pediatric to adult diabetes care services: A qualitative study

Abstract Background and Aims When youth with diabetes transition from pediatric to adult diabetes care, they are at high risk for loss to follow up and worsening glucose control. We aimed to gain insight on how to improve the transition of youth with type 1 diabetes from pediatric to adult diabetes care from the patients' and parents' perspective. Methods We conducted focus groups in youth with type 1 diabetes in transition from pediatric to adult diabetes care and their parents, in Calgary, Alberta, between June and August 2014. Eligibility criteria included: (a) type 1 diabetes; (b) aged 15 to 25 years; (c) have or had received care at the pediatric hospital; and, (d) either pre or post‐transfer; or, (e) parents of recently transferred youth. Purposive sampling was used, and the theoretical framework used was the Integrated Behaviour Model. Participants were asked about positive, negative, or challenging experiences related to diabetes and transition, solutions to challenges, and tools and strategies to improve and better support transition. Thematic analysis was conducted after focus groups were recorded and transcribed. Results Three focus groups were conducted: pre‐transfer youth with diabetes (4 females and 3 males; median age 17.5 years, IQR 1.3 years); post‐transfer young adults with diabetes (2 females and 2 males; median age 23.5 years, IQR 1.2 years); and parents of recently transferred young adults with diabetes (n = 3). Main themes were: (a) communication technology; (b) the need for more transition and diabetes education and preparation during transition; and, (c) the importance and need for social and peer support. Conclusion This study describes specific areas that may improve diabetes transfer and transition from pediatric to adult diabetes care. This information can help inform clinical care delivery for transition and the development of programs, strategies, and interventions to improve transition care.


| INTRODUCTION
Diabetes is increasing in the United States, and in 2017, 9.7% of the population were estimated to have this chronic condition. 1 Although most of the attention given to the diabetes epidemic has focused on the increase of diabetes in adults, there is a concerning rise in the prevalence of diabetes in children and youth. [2][3][4][5][6][7] In less than 10 years, between 2001 and 2009, the prevalence of type 1 diabetes in youth increased by 21%. 8 Type 1 diabetes is the most common form of diabetes in children and youth, 9 and results from the autoimmune destruction of the insulin-producing cells of the pancreas. 9 Preventive measures are necessary to stop this epidemic, and until approaches are available, management strategies that address the unique care needs of youth with diabetes are equally important. One such area is the transition of youth with diabetes from pediatric to adult care.
Transition is "the purposeful, planned movement of adolescent adults with chronic physical and medical conditions from childcentered to adult-oriented systems". 10 Transition is not a single event; rather, it is a process that includes the transfer of care from pediatric to adult health care services (Figure 1). At our center, the transition process starts at age 14 years and transfer from pediatric to adult care services occurs between the ages of 17 to 18 years.
The transition period from pediatric to adult diabetes care has been identified as a potentially vulnerable and challenging period for youth and families. 11,12 Diabetes is a particularly complex condition, requiring a daily commitment to nutrition, monitoring of blood glucose, and adherence to medications, with self-management being a cornerstone of care in adolescence. 13 In addition to their medical needs, this age group has multiple concurrent competing priorities (ie, school, sports teams, relationships, identity, autonomy, among others) and developmental changes. Coupled with the physical, psychological, and social changes, youth with diabetes in transition face significant challenges as they deal with the daily complexity of this chronic condition and substantial changes in their care as they transfer from pediatric to adult diabetes care services. 12,14 During the transition period, up to 60% of youth with diabetes drop out of medical care post-transfer. 11,15,16 This loss to follow-up is associated with worsening glycemic control and with avoidable hospitalizations. 11,15,16 This period is also associated with poor self-care behaviors and mental health symptoms. 17,18 Youth with diabetes are also five times more likely to die than their age-matched peers. 19 Unfortunately, current health care services may be failing to meet the unique needs of youth with diabetes. 11,[15][16][17][18]20,21 Several strategies to address this problem have shown, at best, some promising results, but there is still substantial room for improvement. 12,22,23 Strategies have varied and have included transition coordinators, transition clinics, and group education sessions, with this literature recently being summarized in a systematic review. 23 Transition trials thus far have been unsuccessful in showing improved follow up rates post transfer. [24][25][26] In the development of tools and strategies to improve diabetes transition care, it is important to have the input of key stakeholders, namely patients and their families, prior to their development and implementation, rather than relying solely on physician or other health care provider's feedback alone. While a few studies have documented the experience of young adult with diabetes, these tend to only include those individuals post-transfer and in a private payer health care setting. 20,27 Here, in contrast to other studies, we have purposely included a contemporary cohort of youth and young adults at varying stages of transition (ie, pre and post-transfer), as well as parents, to gather a variety of participants' perspectives and experiences. 20,27 Furthermore, in contrast to previous studies conducted in private payer systems, ours was conducted in a single payer system in Canada. 20,27 Notably, our strategy would build on previous literature which showed that a transition coordinator modestly improves diabetes transition care in the Canadian setting. 28 As such, the objective of this study was to gain insight on how to improve the transition of youth with type 1 diabetes from pediatric to adult diabetes care from the patients' and parents' perspective.

| Study design
We conducted a qualitative descriptive study. 29 Qualitative description seeks to elicit and capture perspectives through qualitative methods such as in focus groups. 29 We conducted three focus groups: pre-transfer youth with diabetes (group 1); post-transfer young adults with diabetes (group 2); and, parents of recently transferred young adults with diabetes (group 3). We purposely included these groups as we considered it important to have the input of youth with type 1 diabetes at varying stages of transition (ie, pre-transfer and post-transfer from pediatric to adult diabetes care) as well as their parents, being key stakeholders. We used the Consolidate Criteria for Reporting Qualitative Research (COREQ) as the reporting framework for this study. 30

| Study population and setting
This study was conducted in Calgary, Alberta, a large urban city, population >1.2 million, in which the Alberta Children's Hospital

| Analysis
Two team members, experienced in qualitative research methods, guided the analytic process using conventional qualitative content analysis. 34 Transcripts and notes were read multiple times, independently and in duplicate, to identify common words, phrases, stories, etc., and these commonalities were highlighted, coded, organized, and then grouped together using spreadsheets. 35

| Theme 3: Social and peer support
Youth with diabetes and parents highlighted the importance of a peer, or group of others to share experiences and provide social support.
Visits with health care providers (ie, physicians, nurses, dieticians) were not adequately meeting the needs of individuals with diabetes.
"Kinda gives me a bit of ease knowing that she's keeping an eye. This suggests that at a younger age, the need for support is often met by their parents or guardians. However, as they mature and aim for independence from their parents, transition youth also seek or want support elsewhere. In this case, they recognized the importance of receiving this from individuals who share the same experiences of living with diabetes.

| DISCUSSION
The transition period for youth and young adults with diabetes is a challenging and vulnerable time because in addition to the daily complexity of this chronic condition, and substantial changes in their care as they transfer from pediatric to adult care, there are many significant physical, psychological, and social changes youth experience as a part of their normal development. 14 As such, we aimed to gain insight into how to improve the transition process from pediatric to adult diabetes care. Our focus groups of youth and young adults before and after transfer, as well as parents, identified main themes related to transition, including the need for increased use of communication technology in the process, the need for increased transition and diabetes education and preparation, and the importance of social and peer support. These findings are important, with potential implications to clinical care delivery and transition strategies and programs (  37,38 Adolescents with a chronic disease who used a web-based and text-delivered disease management and skill-based intervention improved their disease management skills, health-related self-efficacy, and patient-initiated communications. 39 Similarly, the Maestro project, a transition program including a transition coordinator who regularly called or emailed transitioning youth, also leveraged technology with a website. This program demonstrated a reduction in the loss to follow up (40% vs 11%). Due to the multi-facetted nature of the program, the effect of the website use is unknown, but was one of the components of this successful program. 28 In this study, some youth and families felt they did not receive adequate preparation and others perceived no preparation for transfer and transition was provided, despite these topics being covered during clinical visits. This is consistent with findings from an American study of post-transition young adults with diabetes. 21  There are also some limitations to this study. First, data were not collected to the point of saturation. 49 This limitation might be mitigated by the fact that consistent themes emerged from the focus groups but other themes may still be possible. Second, detailed quantitative information (ie, laboratory results, clinical characteristics) was intentionally not requested, as our study team felt that asking participants for access to their clinical data may deter youth with diabetes from participating (ie, for instance, if their glycemic control was not ideal, they may perceive that they would be scrutinized and avoid participating). Also, we did not consider gender in our sampling nor in the analyses. Importantly, diabetes may affect mothers more deeply than fathers. 50 Furthermore, mothers may be more likely to attend clinic appointments and take responsibility for completion of diabetes related care tasks, including during transfer and transition. 50,51 There is also the possibility of recall bias in the post-transfer group due to time lapse between their transfer and focus groups, and it would have been ideal to include member checking (ie, returning transcripts to participants).
In terms of future studies, further work should also include the perspectives of parents of pre-transfer youth as well as endocrinologists, diabetes educators, family physicians, psychologists, program managers, and office staff (ie, check-in staff or administrative assistants to garner how these youth may differently interact with the health system).

| CONCLUSION
In summary, our findings support the inclusion of the use of communication technologies, improved transition and diabetes education, social and peer support in the development, and implementation of programs and strategies to improve transition from pediatric to adult diabetes care. A program or strategy which prepares and supports youth and families and that ensures smooth transfer and transition would be ideal. Importantly, such programs or strategies would minimize adverse health events and maintain or improve quality of care for youth with diabetes and their families through this important phase of their lives.

ACKNOWLEDGMENTS
The authors gratefully acknowledge the participation of the youth and families who agreed to facilitate this research.

FUNDING
This work was funded by The Lawson Foundation. The funder did not have any role in study design, collection, analysis and interpretation of data, writing of the report; and in the decision to submit the article for publication.

CONFLICT OF INTEREST
The authors report no conflicts of interest in this work. Sonia Butalia had full access to all the data in the study and takes complete responsibility for the integrity of the data and the accuracy of the data analysis.

TRANSPARENCY STATEMENT
Sonia Butalia confirms that this manuscript is an honest, accurate, and transparent account of the study being reported; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned (and, if relevant, registered) have been explained.

DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.