Ashley L. Dunn

Background/Objectives: Adolescents and young adults (AYAs) with inflammatory bowel disease (IBD) experience persistent physical symptoms and psychosocial challenges that can impair functioning and quality of life. Health mindset, beliefs about whether health is fixed versus malleable and responsive to effort, is linked to positive health outcomes but has not been examined in AYAs with IBD. This study evaluated the internal reliability of a health mindset measure in AYAs with IBD and examined associations between health mindset and depressive symptoms, peer relationships, global health, pain interference, fatigue, and disease activity. Methods: Participants were 101 AYAs with IBD (M = 18.4 years; 54.4% ulcerative colitis; 63.4% female) recruited from an outpatient pediatric IBD clinic and a national IBD network. Participants completed a one-time online survey consisting of the Health Mindset Scale, Patient-Reported Outcomes Measurement Information System (PROMIS) measures for physical, psychosocial, and global health outcomes, and IBD disease activity indices. Results: The Health Mindset Scale demonstrated good internal reliability in this sample. Additionally, a growth health mindset was significantly associated with lower pain interference, lower Crohn’s disease activity, and better global health. No significant associations were observed between health mindset and depressive symptoms, peer relationship quality, fatigue, or ulcerative colitis disease activity. Conclusions: This novel study provides initial evidence that health mindset is associated with clinically meaningful outcomes in AYAs with IBD. These findings highlight that health mindset may be an important psychological construct in chronic illness adjustment and management, extending mindset theory and research to a young clinical population with IBD.

Objective: Celiac disease (CeD) is an autoimmune condition triggered by gluten ingestion that causes intestinal inflammation and multiple symptoms. Management requires strict adherence to a gluten‐free diet (GFD), yet youth with CeD on a GFD report lower quality of life (QoL) and higher rates of depression and anxiety. Although mentorship programs for youth with chronic illnesses can enhance QoL, increase self‐efficacy, and improve mental health outcomes, research on CeD‐specific programs remains sparse. This qualitative study explored the needs and preferences of youth with CeD to inform the development of a tailored mentorship program. Methods: Youth ages 13–25 with CeD participated in three online focus groups in fall 2023. Interviews were recorded, transcribed, and analyzed thematically. Results: Sixteen participants (66.67% female, 60% White), mean age 16.0 years and mean diagnosis age 8.47 years, completed focus group interviews. Three themes emerged: (1) shared lived experiences, (2) accessibility and flexibility in program structure, and (3) fostering connection and community. Participants favored peer relationships matched on age, gender, and shared interests over traditional hierarchical mentorship models. They preferred a hybrid format combining in‐person and virtual one‐on‐one interactions focused on living with CeD, with flexible monthly meetings over 4–6 months. Conclusions: Findings highlight the importance of peer mentorship rooted in shared experiences and adaptable structures. Prioritizing peer connections, flexible program design, and community building may foster meaningful engagement among youth with CeD. These results guide the development of programs that support social connection, self‐management, and psychosocial well‐being in youth with CeD.

Behavioral health interventions for pediatric chronic pain include cognitive-behavioral (CBT), acceptance and commitment (ACT), and family-based therapies, though literature regarding multi-family therapy (MFT) is sparse. This investigation examined the utility and outcomes of the Courage to Act with Pain: Teens Identifying Values, Acceptance, and Treatment Effects (CAPTIVATE) program, which included all three modalities (CBT, ACT, MFT) for youth with chronic pain and their parents. Program utility, engagement, and satisfaction were evaluated via quantitative and qualitative feedback. Pain-specific psychological, behavioral, and interpersonal processes were examined along with outcomes related to disability, quality of life, pain interference, fatigue, anxiety, and depressive symptoms. Participants indicated that CAPTIVATE was constructive, engaging, and helpful for social and family systems. Clinical and statistical improvements with large effect sizes were captured for pain catastrophizing, acceptance, and protective parenting but not family functioning. Similar effects were found for functional disability, pain interference, fatigue, anxiety, and depression. Given the importance of targeting multiple systems in the management of pediatric chronic pain, preliminary findings suggest a potential new group-based treatment option for youth and families. Next steps involve evaluating the differential effect of the program over treatment as usual, as well as specific CBT, ACT, and MFT components and processes that may affect outcomes.

The pediatric adaptation of the Collaborative Health Outcomes Information Registry (Peds-CHOIR) is a free, open-source, flexible learning health care system (LHS) that meets the call by the Institute of Medicine for the development of national registries to guide research and precision pain medicine. This report is a technical account of the first application of Peds-CHOIR with 3 aims: (1) to describe the design and implementation process of the LHS; (2) to highlight how the clinical system concurrently cultivates a research platform rich in breadth (eg, clinic characteristics) and depth (eg, unique patient- and caregiver-reporting patterns); and (3) to demonstrate the utility of capturing patient-caregiver dyad data in real time, with dynamic outcomes tracking that informs clinical decisions and delivery of treatments. Technical, financial, and systems-based considerations of Peds-CHOIR are discussed. Cross-sectional retrospective data from patients with chronic pain (N = 352; range, 8-17 years; mean, 13.9 years) and their caregivers are reported, including National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS) domains (mobility, pain interference, fatigue, peer relations, anxiety, and depression) and the Pain Catastrophizing Scale. Consistent with the literature, analyses of initial visits revealed impairments across physical, psychological, and social domains. Patients and caregivers evidenced agreement in observable variables (mobility); however, caregivers consistently endorsed greater impairment regarding internal experiences (pain interference, fatigue, peer relations, anxiety, and depression) than patients' self-report. A platform like Peds-CHOIR highlights predictors of chronic pain outcomes on a group level and facilitates individually tailored treatment(s). Challenges of implementation and future directions are discussed.