Elizabeth A. Pyatak

Let’s Empower and Prepare (LEAP): Evaluation of a Structured Transition Program for Young Adults With Type 1 Diabetes

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.

Challenges contributing to disrupted transition from paediatric to adult diabetes care in young adults with Type 1 diabetes

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.

Adherence decision making in the everyday lives of emerging adults with type 1 diabetes.

Purpose The purpose of this study was to explore motivations underlying nonadherent treatment decisions made by young adults with type 1 diabetes. Methods Eight emerging adults each completed a series of semi-structured interviews concerning their approaches to diabetes care, relationships with clinicians, and everyday activities and routines. A narrative thematic analysis was used to develop initial themes and refine them through continued data collection and review of the research literature. Results Five themes were identified as motivating nonadherence: (1) efforts to mislead health care providers, (2) adherence to alternative standards, (3) treatment fatigue and burnout, (4) social support problems, and (5) emotional and self-efficacy problems. Conclusion Instances of nonadherence generally involved a combination of the five identified themes. Participants reporting nonadherence also described difficulties communicating with care providers regarding their treatment. Nonjudgmental communication between providers and emerging adults may be particularly important in promoting positive health outcomes in this population.

Conducting intervention research among underserved populations: lessons learned and recommendations for researchers.

Randomized controlled trials (RCTs) are considered the criterion standard in research design for establishing treatment efficacy. However, the rigorous and highly controlled conditions of RCTs can be difficult to attain when conducting research among individuals living with a confluence of disability, low socioeconomic status, and being a member of a racial/ethnic minority group, who may be more likely to have unstable life circumstances. Research on effective interventions for these groups is urgently needed, because evidence regarding approaches to reduce health disparities and improve health outcomes is lacking. In this methodologic article, we discuss the challenges and lessons learned in implementing the Lifestyle Redesign for Pressure Ulcer Prevention in Spinal Cord Injury study among a highly disadvantaged population. These issues are discussed in terms of strategies to enhance recruitment, retention, and intervention relevance to the target population. Recommendations for researchers seeking to conduct RCTs among socioeconomically disadvantaged, ethnically diverse populations are provided.

The Role of Occupational Therapy in Diabetes Self-Management Interventions:

Approximately 23.6 million people in the United States are living with diabetes, a disease that is a leading cause of disabling conditions including blindness, kidney failure, amputations, heart disease, and stroke. Although these complications of diabetes can be delayed or prevented through intensive diabetes self-management (DSM), maintaining control of the disease can be burdensome and negatively impact quality of life. Occupational therapy has a largely untapped potential to assist individuals who struggle with managing diabetes in the context of everyday life, yet there is little discussion of DSM in the occupational therapy literature. The author conducts a systematic review of the existing occupational therapy literature on diabetes, examines the current state of DSM interventions, and discusses a potential role for occupational therapy using programs such as Lifestyle Redesign®.

Disclosure of psychosocial stressors affecting diabetes care among uninsured young adults with Type 1 diabetes.

To determine the disclosure rates of psychosocial issues affecting routine diabetes care.

Patient perspectives on peer mentoring: type 1 diabetes management in adolescents and young adults.

Purpose The purpose of the study was to identify attitudes and topics relevant to peer mentoring as an adherence-promoting intervention for adolescents and young adults (YAs) with type 1 diabetes (T1D). Methods Self-administered survey data were collected in 2 diabetes clinics from a convenience sample of adolescents as prospective mentees (ages 13-18) and YAs as prospective mentors (ages 19-25) with T1D. Survey topics included demographics, disease history, glycemic control, adherence, depression, barriers to disease management, social support, and interest in peer mentoring. Descriptive statistical analyses, thematic coding, and stepwise multivariate logistic regression were performed. Results A majority of the 54 adolescents and 46 YAs expressed interest in a peer mentoring program. Having supportive friends and living in a large household positively predicted adolescent interest in having a peer mentor. Approximately one-third of all participants experienced social barriers to diabetes management. For adolescents, barriers included inflexible schedules, unfamiliar foods, and the embarrassment of checking blood glucose in front of others. Young adults reported barriers in tracking food consumption and remembering to check blood glucose. Various diabetes management skills were in high demand by adolescents, who especially desired to learn about managing T1D on their own and in college. Participants were open to multiple communication modes, including in-person meetings, phone, text messaging, and social media. Conclusions Many adolescents and young adults with T1D are interested in peer mentoring as a way to facilitate learning and sharing essential diabetes management skills and experiences.

Implementing trials of complex interventions in community settings: The USC – Rancho Los Amigos Pressure Ulcer Prevention Study (PUPS)

Background Randomized trials of complex, non-pharmacologic interventions implemented in home and community settings, such as the University of Southern California (USC)-Rancho Los Amigos National Rehabilitation Center (RLANRC) Pressure Ulcer Prevention Study (PUPS), present unique challenges with respect to (1) participant recruitment and retention, (2) intervention delivery and fidelity, (3) randomization and assessment, and (4) potential inadvertent treatment effects. Purpose We describe the methods employed to address the challenges confronted in implementing PUPS. In this randomized controlled trial, we are assessing the efficacy of a complex, preventive intervention in reducing the incidence of, and costs associated with, the development of medically serious pressure ulcers in people with spinal cord injury. Methods Individuals with spinal cord injury recruited from RLANRC were assigned to either a 12-month preventive intervention group or a standard care control group. The primary outcome is the incidence of serious pressure ulcers with secondary endpoints including ulcer-related surgeries, medical treatment costs, and quality of life. These outcomes are assessed at 12 and 24 months after randomization. Additionally, we are studying the mediating mechanisms that account for intervention outcomes. Results PUPS has been successfully implemented, including recruitment of the target sample size of 170 participants, assurance of the integrity of intervention protocol delivery with an average 90% treatment adherence rate, and enactment of the assessment plan. However, implementation has been replete with challenges. To meet recruitment goals, we instituted a five-pronged approach customized for an underserved, ethnically diverse population. In intervention delivery, we increased staff time to overcome economic and cultural barriers to retention and adherence. To ensure treatment fidelity and replicability, we monitored intervention protocol delivery in accordance with a rigorous plan. Finally, we have overcome unanticipated assessment and design concerns related to (1) determining pressure ulcer incidence/severity, (2) randomization imbalance, and (3) inadvertent potential control group contamination. Limitations We have addressed the most daunting challenges encountered in the recruitment, assessment, and intervention phases of PUPS. Some challenges and solutions may not apply to trials conducted in other settings. Conclusions Overcoming challenges has required a multifaceted approach incorporating individualization, flexibility, and persistence, as well as the ability to implement needed mid-course corrections.

We are all gonna get diabetic these days: the impact of a living legacy of type 2 diabetes on Hispanic young adults' diabetes care.

Purpose The purpose of this study was to investigate how an intergenerational legacy of type 2 diabetes affected the knowledge, attitudes, and treatment strategies of Hispanic young adults with diabetes. Methods Eight Hispanic young adults (ages 18-30 years) participated in a series of in-home longitudinal qualitative interviews, and 11 of their family members completed single in-home interviews, regarding their diabetes management practices. Interview transcripts were analyzed thematically by a team of researchers. Results Five themes emerged that characterized the influence of an intergenerational legacy of diabetes on young adults: food and family (how meal preparation and eating are shared within families), doing together (activity participation is contingent on others’ participation), knowledge and expectations (expectations for the future and understandings of diabetes are shaped by family members), miscarried helping (well-intentioned actions have negative consequences), and reciprocal support (children and parents support each other’s diabetes care). Conclusions Hispanic young adults’ knowledge, attitudes, and self-care practices related to diabetes are strongly influenced by the diabetes management practices of family members with diabetes, which often depart from current standards of diabetes care. Care providers should consider family members as a potentially significant influence, either positive or negative, on the diabetes self-care practices of this population.

Developing a Manualized Occupational Therapy Diabetes Management Intervention Resilient, Empowered, Active Living With Diabetes

This article reports on the development of a manualized occupational therapy intervention for diabetes management. An initial theoretical framework and core content areas for a Stage 1 intervention manual were developed based on an in-depth needs assessment and review of existing literature. After evaluation by a panel of experts and completion of a feasibility study, the intervention was revised into a Stage 2 manual in preparation for a randomized study evaluating the intervention’s efficacy. In developing the initial manual, we delineated core theoretical principles to allow for flexible application and tailoring of the intervention’s content areas. Expert panel feedback and feasibility study results led to changes to the intervention structure and content as we developed the Stage 2 manual. Through describing this process, we illustrate the dynamic evolution of intervention manuals, which undergo revisions due to both theoretical and practical considerations at each stage of the research-to-clinical practice pipeline.