Helmsley Type 1 Diabetes Transition “Let’s Empower and Prepare” (LEAP) Program
Beth Pyatak PhD, OTR/L, CDCES, FAOTA
February 2011 to December 2013 | Total funding $1,119,060
Leona M. and Harry B. Helmsley Charitable Trust (32010PG-T1D011) $1,119,060
Adolescence is a period of many physical, social, and psychological changes, and maintaining control of type 1 diabetes (T1D) and understanding the healthcare system is often not a priority. Diabetes-related health outcomes worsen during adolescence, with poor adherence to insulin therapy and blood glucose testing and poor glycemic control being common among this group. The LEAP transition education curriculum is based primarily on Self-Determination Theory, predominantly in promoting the autonomous motivation of adolescents with diabetes to engage in beneficial self-care activities. The project as outlined, in the specific aims, consists of the development and implementation of a empowerment-based transition program for adolescents and young adults with T1D known as LEAP, “Let’s Empower and Prepare.” The study was divided into 2 phases: Developmental Phase, 1 year and Implementation Phase, 2 years. The study examined the efficacy of a new process of care aimed at empowering adolescents from underserved urban communities.
Weigensberg, M. J., Vigen, C., Sequeira, P., Spruijt-Metz, D., Juarez, M., Florindez, D., Provisor, J., Peters, A., & Pyatak, E. A. (2018). Diabetes Empowerment Council: Integrative Pilot Intervention for Transitioning Young Adults With Type 1 Diabetes. Global Advances in Health and Medicine, 7, 2164956118761808. https://doi.org/10.1177/2164956118761808 Show abstract
Background. The transition of young adults with type 1 diabetes (T1D) from pediatric to adult care is challenging and frequently accompanied by worsening of diabetes-related health. To date, there are no reports which prospectively assess the effects of theory-based psycho-behavioral interventions during the transition period neither on glycemic control nor on psychosocial factors that contribute to poor glycemic control. Therefore, the overall aim of this study was to develop and pilot test an integrative group intervention based on the underlying principles of self-determination theory (SDT), in young adults with T1D.
Methods. Fifty-one young adults with T1D participated in an education and case management-based transition program, of which 9 took part in the Diabetes Empowerment Council (DEC), a 12-week holistic, multimodality facilitated group intervention consisting of “council” process based on indigenous community practices, stress-reduction guided imagery, narrative medicine modalities, simple ritual, and other integrative modalities. Feasibility, acceptability, potential mechanism of effects, and bio-behavioral outcomes were determined using mixed qualitative and quantitative methods.
Results. The intervention was highly acceptable to participants, though presented significant feasibility challenges. Participants in DEC showed significant reductions in perceived stress and depression, and increases in general well-being relative to other control participants. Reduction in perceived stress, independent of intervention group, was associated with reductions in hemoglobin A1C. A theoretical model explaining the effects of the intervention included the promotion of relatedness and autonomy support, 2 important aspects of SDT.
Conclusions. The DEC is a promising group intervention for young adults with T1D going through transition to adult care. Future investigations will be necessary to resolve feasibility issues, optimize the multimodality intervention, determine full intervention effects, and fully test the role of the underlying theoretical model of action.
Pyatak, E. A., Sequeira, P. A., Vigen, C. L., Weigensberg, M. J., Wood, J. R., Montoya, L., Ruelas, V., & Peters, A. L. (2017). Clinical and psychosocial outcomes of a structured transition program among young adults with type 1 diabetes. Journal of Adolescent Health, 60(2), 212-218. https://doi.org/10.1016/j.jadohealth.2016.09.004 Show abstract
Purpose. We identified and treated young adults with type 1 diabetes who had been lost to follow-up during their transfer from pediatric to adult care, comparing their clinical, psychosocial, and health care utilization outcomes to participants receiving continuous care (CC) throughout the transition to adult care.
Methods. Individuals in their last year of pediatric care (CC group, n = 51) and individuals lost to follow-up in the transfer to adult care ("lapsed care" [LC] group, n = 24) were followed prospectively for 12 months. All participants were provided developmentally tailored diabetes education, case management, and clinical care through a structured transition program.
Results. At baseline, LC participants reported lapses in care of 11.6 months. Compared with CC participants, they had higher hemoglobin A1C (A1C; p = .005), depressive symptoms (p = .05), incidence of severe hypoglycemia (p = .005), and emergency department visits (p = .004). At 12-month follow-up, CC and LC participants did not differ on the number of diabetes care visits (p = .23), severe hypoglycemia (no events), or emergency department visits (p = .22). Both groups' A1C improved during the study period (CC: p = .03; LC: p = .02). LC participants' depressive symptoms remained elevated (p = .10), and they reported a decline in life satisfaction (p = .007). There was greater loss to follow-up in the LC group (p = .04).
Conclusions. Our study suggests that, for young adults with a history of lapses in care, a structured transition program is effective in lowering A1C, reducing severe hypoglycemia and emergency department utilization, and improving uptake of routine diabetes care. Loss to follow-up and psychosocial concerns remain significant challenges in this population.
Sequeira, P. A., Pyatak, E. A., Weigensberg, M. J., Vigen, C. P., Wood, J. R., Ruelas, V., Montoya, L., Cohen, M., Speer, H., Clark, S., & Peters, A. L. (2015). Let's Empower and Prepare (LEAP): Evaluation of a structured transition program for young adults with type 1 diabetes. Diabetes Care, 38(8), 1412-1419. https://doi.org/10.2337/dc14-2577 Show abstract
Objective. To evaluate the efficacy of a structured transition program compared with usual care in improving routine follow-up, clinical, and psychosocial outcomes among young adults with type 1 diabetes.
Research Design and Methods. Eighty-one young adults in their last year of pediatric care were recruited from three clinics. Intervention group (IG) participants (n = 51) received a structured transition program incorporating tailored diabetes education, case management, group education classes, and access to a newly developed young adult diabetes clinic and transition website. Control group (CG) participants (n = 30) received usual care. The primary outcome was the number of routine clinic visits. Secondary outcomes included glycemic control, hypoglycemia, health-care use, and psychosocial well-being. Assessments were conducted at baseline, and 6 and 12 months.
Results. Limitations in CG follow-up prevented direct comparisons of adult care visits; however, at the 12-month follow-up among IG participants discharged from pediatric care (n = 32), 78% had one or more adult visits. Among IG participants, the total number of clinic visits did not differ between those who transitioned and those who remained in pediatric care (3.0 ± 1.24 vs. 3.11 ± 0.94, P = 0.74). IG compared with CG participants had improved glycemic control (-0.40 ± 1.16% vs. 0.42 ± 1.51% [4.4 ± 12.7 mmol/mol vs. 4.6 ± 16.5 mmol/mol], P = 0.01), incidence of severe hypoglycemia (0.0% vs. 16%, P = 0.02), and global well-being (P = 0.02) at 12 months.
Conclusions. A structured transition program was successful in facilitating transition to adult care without a decrease in clinical follow-up. Compared with usual care, the transition program facilitated improvements in glycemic control, hypoglycemia, and psychosocial well-being.
Pyatak, E. A., Sequeira, P. A., Whittemore, R., Vigen, C. P., Peters, A. L., & Weigensberg, M. J. (2014). Challenges contributing to disrupted transition from paediatric to adult diabetes care in young adults with type 1 diabetes. Diabetic Medicine, 31(12), 1615-1624. https://doi.org/10.1111/dme.12485 Show abstract
Aim. To examine challenges contributing to disruptions in care during the transition from paediatric to adult care among young adults with Type 1 diabetes who are primarily in ethnic minority groups and have low socio-economic status.
Methods. Participants (n = 20) were newly enrolled patients in a transition clinic for young adults with Type 1 diabetes with a history of loss to medical follow-up. Participants completed qualitative semi-structured interviews detailing their transition experiences in addition to demographic, HbA1c and psychosocial measures. Descriptive statistics were completed for quantitative data, and narrative thematic analysis of interviews was used to identify common themes. A mixed-method analysis was used to identify the associations between stressors identified in interviews and clinical and psychosocial variables.
Results. Three categories of challenges contributing to loss to follow-up were identified: psychosocial challenges, health provider and health system challenges and developmental challenges. Participants experienced a high degree of stressful life circumstances which were associated with higher HbA1c (r = 0.60, P = 0.005), longer duration of loss to follow-up (r = 0.51, P = 0.02), greater emergency department utilization (r = 0.45, P = 0.05), and lower life satisfaction (r = -0.62, P = 0.003).
Conclusions. A confluence of challenges, including stressful life circumstances, healthcare system barriers and the developmental trajectory of young adulthood, contributes to a high risk of loss to follow-up and poor health in this population of young adults with Type 1 diabetes. An integrated approach to transition addressing medical and psychosocial needs may facilitate improved follow-up and health outcomes in clinical settings.
Pyatak, E. A., Sequeira, P., Peters, A. L., Montoya, L., & Weigensberg, M. J. (2013). Disclosure of psychosocial stressors affecting diabetes care among uninsured young adults with Type 1 diabetes. Diabetic Medicine, 30(9), 1140-1144. https://doi.org/10.1111/dme.12248 Show abstract
Aims. To determine the disclosure rates of psychosocial issues affecting routine diabetes care.
Methods. A total of 20 young adults were interviewed regarding the impact of psychosocial stressors on their diabetes care. The interviewer, endocrinologist and case manager reported the prevalence rates of psychosocial stressors. Disclosure rates were compared to determine the prevalence of psychosocial issues and the different patterns of disclosure.
Results. Participants reported a high number of psychosocial stressors, which were associated with poorer glycaemic control (r = 0.60, P = 0.005). Approximately half of all disclosed stressors (50.9%) were identified in routine care; other stressors were identified only through intensive case management and/or in-depth interviews.
Conclusions. Identifying psychosocial stressors in routine care, and providing referrals to psychological or social services, is a significant unmet need and may improve glycaemic control among certain populations with diabetes. Systematic mechanisms of capturing this information, such as by screening surveys, should be considered.