Objective
The goal of this study is to improve transition readiness in late adolescents with T1D and, subsequently, their diabetes self-management, the transfer to adult healthcare, and diabetes-related health outcomes during emerging adulthood. We aim to achieve this goal by delivering and assessing the preliminary evidence for Behavioral Family Systems Therapy for Diabetes Transition (BFST-DT). BFST-DT is a family-based intervention developed for late adolescents with T1D and their parents to help prepare for the transition to emerging adulthood by targeting individual and family transition readiness factors. We propose testing this intervention via a pilot pre-post intervention design, employing an iterative mixed-methods assessment of BFST-DT’s initial efficacy, acceptability, and feasibility both in the short-term and over two-years post-intervention. The specific Aims are:
Aim 1: Assess the preliminary initial efficacy of BFST-DT in a pre-post pilot intervention design. We will recruit 30 families (juniors or seniors in high school and a parent) who will participate in the intervention. We will assess changes in modifiable individual transition readiness variables (diabetes self-management behaviors, diabetes-related self-efficacy, diabetes-related resilience, diabetes-related distress) and family transition readiness variables (family communication, family problem solving, diabetes-related family conflict, and parent support) over time (pre/post). It is hypothesized that participants will demonstrate improvements in these modifiable individual and family transition readiness factors.
Aim 2: Assess the acceptability and feasibility of BFST-DT as a family-based intervention for adolescents with T1D. We will assess its acceptability and feasibility via qualitative focus groups and individual interviews, and quantitative questionnaire data. It is hypothesized that the intervention will be determined to be feasible, and participants will find the intervention acceptable, relevant, helpful, and would recommend the intervention to others.
Aim 3: Assess outcomes and participant perspectives on BFST-DT over a two-year period following the intervention. We will follow participants longitudinally for two years post-intervention to assess emerging adulthood outcomes including independence (from parents) in diabetes self-management, transfer of care to an adult healthcare provider, and key diabetes-related health outcomes (hbA1c; number of emergency room visits and hospitalizations; episodes of severe hypoglycemia; episodes of diabetic ketoacidosis; completed and missed diabetes clinic visits). In addition, we will assess participant perspectives on how the skills learned during the intervention were utilized in daily self-management overtime. It is hypothesized that improved individual and family transition readiness factors post intervention will be associated with emerging adulthood outcomes, and that families will find the intervention to have been important in contributing to transition readiness overtime.
Background Rationale
Diabetes care and resulting glycemic control is poorly managed during late adolescence and early young adulthood - also known as emerging adulthood (ages 18-25) - making it a high-risk time for individuals with type 1 diabetes (T1D). Up to 60% of emerging adults with T1D do not transfer from pediatric to adult care successfully, and as few as 17% achieve glycemic targets. The negative outcomes seen during emerging adulthood for those with T1D are suspected to be the result of the convergence of normative changes and challenges during this time period combined with diabetes-related transitions.
Transition readiness is a multi-component, multi-systemic construct that includes the skills and conditions believed to prepare emerging adults for successful diabetes management in the context of becoming independent in their diabetes management, and in the context of transferring from pediatric to adult healthcare. Given the significant medical and psychosocial risks during this vulnerable period, and the potential consequences for long-term health, there is a significant need to intervene on transition readiness.
Our goal is to improve transition readiness in order to improve diabetes self-management, the transfer to adult healthcare, and diabetes-related health outcomes during emerging adulthood for individuals with T1D. This pilot study will assess the preliminary evidence for the initial efficacy, acceptability, and feasibility of Behavioral Family Systems Therapy for Diabetes Transition (BFST-DT). BFST-DT was adapted from Behavioral Family Systems Therapy for Diabetes (BFST-D), an existing empirically supported family-based intervention for adolescents with T1D experiencing high levels of family conflict and poor metabolic control, which has been found to improve glycemic control, reduce diabetes-related family conflict, and improve family communication with effects maintained for 12 months. While promising, that intervention is not specifically designed to promote transition readiness as it does not focus on all of the individual factors (i.e., diabetes self-management behaviors, diabetes-related self-efficacy, diabetes-related resilience, diabetes-related distress) or family factors (i.e., the communication and problem solving specific to adolescents’ independence in diabetes self-management) which are all key to transition readiness.
Therefore, we collaborated with the original BFST-D developers to adapt it into BFST-DT by integrating key individual components into the curriculum, adding transition-specific family components, and modifying the delivery setting and schedule. BFST-DT addresses multifactorial yet modifiable individual and family transition readiness factors. From a theoretical perspective, focusing on modifiable factors is consistent with a social-ecological model of transition readiness, recognizing the inter-relationships between individual and family factors in facilitating the multiple transitions experienced during emerging adulthood, including the transition from parent-led to emerging adult-led diabetes management, and the transfer to adult healthcare. Further, the synergistic benefits of addressing both individual and family factors simultaneously are expected to exceed the benefits of a unitary approach. Late adolescence (juniors and seniors in high school; the early emerging adult phase of development), while teens are still receiving the support and care of their families, is an ideal time for a theory-driven intervention designed to address key modifiable transition readiness variables to improve outcomes during emerging adulthood. Importantly, the BFST-DT curriculum was developed based on recommendations by the National Diabetes Education Program the American Diabetes Association, the GotTransition coalition, and the American Academy of Pediatrics, and was also based on data collected from focus groups with key stakeholders (pediatric and adult providers, and young adults who have transferred to adult healthcare).
Description of Project
Diabetes care and resulting glycemic control is poorly managed during late adolescence and early young adulthood - also known as emerging adulthood (ages 18-25) - making it a high-risk time for individuals with type 1 diabetes (T1D). Up to 60% of emerging adults with T1D do not transfer from pediatric to adult care successfully, and as few as 17% achieve glycemic targets. The negative outcomes seen during emerging adulthood for those with T1D are suspected to be the result of the convergence of normative changes and challenges during this time period combined with diabetes-related transitions. Transition readiness is a multi-component, multi-systemic construct that includes the skills and conditions believed to prepare emerging adults for successful diabetes management in the context of becoming independent in their diabetes management, and in the context of transferring from pediatric to adult healthcare. Given the significant medical and psychosocial risks during this vulnerable period, and the potential consequences for long-term health, there is a significant need to intervene on transition readiness.
The goal of this study is to improve transition readiness in late adolescents with T1D and, subsequently, their diabetes self-management, the transfer to adult healthcare, and diabetes-related health outcomes during emerging adulthood. We aim to achieve this goal by delivering and assessing the preliminary evidence for Behavioral Family Systems Therapy for Diabetes Transition (BFST-DT). BFST-DT is a family-based intervention developed for late adolescents with T1D and their parents to help prepare for the transition to emerging adulthood by targeting individual and family transition readiness factors. BFST-DT is highly innovative, in that it combines multi-family group-based programming with individualized attention, all via telehealth. We propose testing this intervention via a pilot pre-post intervention design, employing an iterative mixed-methods assessment of BFST-DT’s initial efficacy, acceptability, and feasibility both in the short-term and over two-years post-intervention. The specific Aims are:
Aim 1: Assess the preliminary initial efficacy of BFST-DT in a pre-post pilot intervention design.
Aim 2: Assess the acceptability and feasibility of BFST-DT as a family-based intervention for adolescents with T1D.
Aim 3: Assess outcomes and participant perspectives on BFST-DT over a two-year period following the intervention.
Participants will be recruited from Ann & Robert H. Lurie Children’s Hospital and include 30 adolescent/parent pairs. Adolescents will have had T1D for at least one year, and be juniors or seniors in high school. The 30 adolescent/parent participants will be divided into 3 intervention groups with 10 families in each group, and will participate in the intervention over a 7-month period. Participants attend four 2-hour multi-family group sessions (one per month), with one individualized family session in-between each of the first three multi-family group sessions and three more individualized family sessions following the last multi-family group. Quantitative data will be collected pre- and post-intervention via adolescent- and parent-completed questionnaires administered via REDCap, assessing transition readiness and medical history. Quantitative and qualitative data about BFST-DT’s acceptability and feasibility will be collected via focus groups after the last multi-family group, and via individual family interviews and questionnaires after the last individual family session. Participants will be contacted at 6-, 12-, and 24-months post intervention to complete questionnaires to report on diabetes-self management, the transfer to adult healthcare, and diabetes-related health outcomes. In addition, at 24-months post intervention, participants will be invited to complete an interview to report on their perceptions of the intervention’s long-term impact on diabetes and psychosocial outcomes.
Anticipated Outcome
The goal of this study is to improve transition readiness in late adolescents with T1D and subsequently their diabetes self-management, the transfer to adult healthcare, and diabetes-related health outcomes during emerging adulthood. We aim to achieve this goal by delivering and assessing the preliminary evidence for Behavioral Family Systems Therapy for Diabetes Transition (BFST-DT). We propose testing this intervention via a pilot pre-post intervention design, employing an iterative mixed-methods assessment of BFST-DT’s initial efficacy, acceptability, and feasibility both in the short-term and over two-years post-intervention. It is anticipated that this study will provide empirical evidence that BFST-DT is efficacious in demonstrating improvements in modifiable individual and family transition readiness factors. It is also anticipated that the intervention will be determined to be feasible, and participants will find the intervention acceptable, relevant, helpful, and would recommend the intervention to others. We anticipate that positive outcomes of the intervention will be associated with diabetes self-management, the transfer to adult healthcare, and diabetes-related health outcomes over a 2-year period during emerging adulthood. With such evidence, we intend to apply to fund a future larger-scale longitudinal randomized controlled trial (RCT). Evidence from an RCT could then be used to disseminate the intervention for testing in “real world” settings available to families of youth with T1D and their health care providers.
Relevance to T1D
Diabetes care and resulting glycemic control is poorly managed during late adolescence and early young adulthood - also known as emerging adulthood (ages 18-25) - making it a high-risk time for individuals with type 1 diabetes (T1D). Up to 60% of emerging adults with T1D do not transfer from pediatric to adult diabetes care successfully, and instead experience declines in clinic attendance and limited access to necessary medical services, adverse medical outcomes (e.g., failure to meet glycemic targets, diabetes-related hospitalizations, diabetic ketoacidosis, retinopathy, neuropathy, and hypertension), and psychosocial challenges (e.g., depression, anxiety, eating disorders). Emerging adults are the least likely out of all age groups to achieve glycemic targets. As few as 17% do so, with registry-based studies suggesting hemoglobin A1c peaks during the early phase of emerging adulthood (around the ages of 18 and 19).
The negative outcomes seen during emerging adulthood are suspected to be the result of the convergence of multiple transitions that typically occur during this period. For all individuals regardless of diabetes status, emerging adulthood is a distinct developmental period characterized by increased independence and instability, and by milestones such as completing high school, moving away from home, entering the workforce, attending college, and so forth. This is a developmentally vulnerable time often marked by poor judgment and risk-taking and high levels of family discord. For emerging adults with T1D, they must manage these normative changes and challenges while also navigating diabetes-related transitions, including assuming more diabetes-related responsibility from parents, and transferring from pediatric to adult healthcare. In other words, emerging adults with diabetes must adhere to the daily demands of diabetes care, including the need to coordinate daily self-management, find and engage with appropriate adult healthcare providers, and obtain access to supplies and medical care, all the while navigating normative decisions that young adults make related to relationships, living arrangements, occupations, and financial management. Given the significant health risks during this vulnerable period, and the potential consequences for long-term health, the paucity of research on empirically-based interventions to support emerging adults with T1D is unacceptable.
Transition readiness is a multi-component, multi-systemic construct that includes the skills and conditions believed to prepare emerging adults for successful diabetes management in the context of becoming independent (from their parents) in their diabetes management, and in the context of transferring from pediatric to adult healthcare. Behavioral Family Systems Therapy for Diabetes Transition (BFST-DT). BFST-DT is a family-based intervention developed for late adolescents with T1D and their parents to help prepare for the transition to emerging adulthood by targeting individual and family transition readiness factors. BFST-DT is highly innovative, in that it combines multi-family group-based programming with individualized attention, all via telehealth. BFST-DT addresses multifactorial yet modifiable individual and family transition readiness factors. From a theoretical perspective, focusing on modifiable factors is consistent with a social-ecological model of transition readiness, recognizing the inter-relationships between individual and family factors in facilitating the multiple transitions experienced during emerging adulthood, including the transition from parent-led to emerging adult-led diabetes management, and the transfer to adult healthcare. Further, the synergistic benefits of addressing both individual and family factors simultaneously are expected to exceed the benefits of a unitary approach. Late adolescence (juniors and seniors in high school; the early emerging adult phase of development), while teens are still receiving the support and care of their families, is an ideal time for a theory-driven intervention designed to address key modifiable transition readiness variables to improve outcomes during emerging adulthood.