Transition to Adult IBD Care: A Pilot Multi-Site, Telehealth Hybrid Intervention.

OBJECTIVE: Transition to adult IBD care continues to be a challenge. Efficacious models of improving transition to adult care in the United States are lacking. We present data from a pilot, prospective, non-randomized, intervention implemented at IBD centers in the Midwest and Southeast United States. DESIGN AND METHODS: Adolescents and young adults (AYAs; 16-20 years) with IBD and their parents completed a 4- to 5-month transition program (1 in-person group session; 4 individual telehealth sessions). Primary outcomes were feasibility (i.e., recruitment, retention, fidelity) and acceptability (i.e., program satisfaction). Secondary outcomes were changes in transition readiness, self-management skill acquisition, perceived readiness to transfer to adult care, and disease knowledge. RESULTS: The study exceeded goals for recruitment (target N = 20; actual: 36) and retention (target: 80%; actual: 86.11%). On average, it took participants 20.91 ± 3.15 weeks to complete our 4- to 5-month intervention and there were no deviations from the study protocol. Participant ratings for overall program satisfaction, perceived helpfulness, and program length and format were positive. Increases in transition readiness, t(30) = 8.30, d = 1.49, p < .001, self-management skill acquisition, t(30) = 3.93, d = 0.70, p < .001, and disease knowledge, t(30) = 8.20, d = 1.58, p < .001 were noted. AYA- and parent-perceived transfer readiness also improved (p's < .05; d's = 0.76-1.68). CONCLUSIONS: This article presents feasibility and acceptability data for a 4- to 5-month transition intervention. Improvements in AYA transition readiness, self-management skill acquisition, IBD knowledge, and AYA/parent perceived transfer readiness were also observed.

Improving IBD Transition, Self-management, and Disease Outcomes With an In-clinic Transition Coordinator.

OBJECTIVES: Deficits in the preparation of patients with inflammatory bowel disease (IBD) who are transitioning to adult care are known yet studies presenting outcome data of transition interventions in IBD are lacking. We present data evaluating the impact of a transition coordinator on behavioral and clinical transition outcomes. METHODS: A retrospective chart review identified 135 patients who had met with our transition coordinator and completed the Transition Readiness Assessment Questionnaire before, and 1 year after, the intervention. Changes in transition readiness, self-management skill acquisition, and clinical outcomes (eg, number of patients transferred vs "bounced back" to pediatrics, percentage of patients over age 21, changes in disease remission) were examined and compared with patients who received no intervention. RESULTS: Intervention participants demonstrated a significant increase in transition readiness, F(1, 134) = 24.34, P < 0.001, and self-management skill acquisition, F(1, 134) = 5.61, P < 0.05. The percentage of patients in remission significantly increased from pre- to post-intervention, χ(134) = 9.03, P < 0.01. There were no significant changes in the comparison population (Ps > 0.05). Following implementation of our programming, the percentage of patients over age 21 decreased by 33.07%. CONCLUSIONS: A 1-time transition coordinator-led intervention improved adolescent transition readiness and acquisition of self-management skills. The proportion of young adult patients retained in pediatric care was reduced. Benefits of hiring a transition coordinator are discussed.

Multi-Site Comparison of Patient, Parent, and Pediatric Provider Perspectives on Transition to Adult Care in IBD.

PURPOSE: This multi-site study examines patient, parent, and pediatric provider perspectives on what is most important for successful transition. DESIGN AND METHODS: Using the Transition Readiness Assessment Questionnaire, 190 participants recruited from two pediatric IBD centers selected the top five skills they considered "most important for successful transition." Rankings were summarized and compared by group. RESULTS: While patients, parents, and clinicians all identified "calling the doctor about unusual changes in health" and "taking medications correctly and independently" as being important, each stakeholder group qualitatively and statistically differed in terms of transition readiness skills emphasized. Patients endorsed "calling the doctor about unusual changes in health" and "being knowledgeable about insurance coverage," as being most important to successful transition while parents emphasized health monitoring and problem solving. Pediatric providers emphasized adherence to treatment and reporting unusual changes in health. There were statistically significant differences in endorsement rates across participants for seven transition readiness skills. Patients agreed with providers 80% of the time and with their parents 40% of the time. Parent-provider agreement was 60%. CONCLUSIONS: Although there was some overlap across groups, areas of emphasis differed by informant. Patients emphasized skills they need to learn, parents emphasized skills they most likely manage for their children, and providers emphasized skills that directly impact their provision of care. PRACTICE IMPLICATIONS: Patient, parent, and provider beliefs all need to be considered when developing a comprehensive transition program. Failure to do so may result in programs that do not meet the needs of youth with IBD.

Concerns, Barriers, and Recommendations to Improve Transition from Pediatric to Adult IBD Care: Perspectives of Patients, Parents, and Health Professionals.

BACKGROUND: The current transition literature is a fragmented assortment of studies examining select subsections of transition stakeholders. METHODS: Adolescent/young adult patients with IBD (40% transferred to adult care), parents, and health providers (53.8% adult providers) participated in 1 of 6 focus group interviews focused on concerns and needs surrounding transition to adult care. Data were analyzed through directed content analysis. RESULTS: Transition needs/concerns focused on (1) losing relationships with pediatric providers, (2) perceptions of poorer quality care from adult providers, (3) high parent involvement preventing the development of youth self-management skills, and (4) finances and insurance. Suggestions to improve transition to adult care included the following: (1) meeting alone with adolescents during appointments, (2) providing concrete guidance on how/when to transition responsibility, and (3) increasing accountability for adolescents. Recommendations to improve transfer included the following: (1) providing more information about the transfer process and adult providers, (2) obtaining peer support and mentoring, and (3) setting goals and deadlines for transfer. CONCLUSIONS: Inclusion of several stakeholder groups allowed for the identification of commonalities across groups as well as their unique needs and concerns surrounding transition to adult care. Concerns and recommendations by participants should be targeted in future transition program efforts.

Transition readiness skills acquisition in adolescents and young adults with inflammatory bowel disease: findings from integrating assessment into clinical practice.

BACKGROUND: Almost 80% of adult gastroenterologists report inadequacies in the preparation of patients transferred from pediatrics. To improve transition to adult care, it is important to identify the specific deficits that patients are demonstrating before transfer. We present data from a clinic-wide assessment of transition readiness skill acquisition in adolescents/young adults with IBD. METHODS: A total of 195 patients (age, 16-25 yr) with IBD completed the Transition Readiness Assessment Questionnaire. Patient age, diagnosis, time since diagnosis, physician global assessment, and patient and parent disease management confidence ratings were extracted from the medical record. Transition Readiness Assessment Questionnaire scores were compared with a benchmark established by an interdisciplinary, multi-institutional Transition Task Force. RESULTS: Only 5.6% of older adolescents/young adults on the verge of transfer to adult care met our institutional benchmark (3.5% of adolescents, 7.3% of young adults). Patients reported mastery of 9.10 ± 4.68 out of 20 Transition Readiness Assessment Questionnaire items. Transition readiness was associated with older age (r = 0.27, P < 0.001) and female gender (F(1,192) = 13.81, P < 0.001) but not time since diagnosis, physician global assessment, or confidence ratings. Deficits in health care utilization/self-advocacy (e.g., understanding insurance, scheduling appointments/following up on referrals), and self-management (e.g., filling/reordering prescriptions) were observed. CONCLUSIONS: Most patients on the verge of transferring to adult care are not demonstrating transition readiness. Deficits observed represent modifiable behaviors. Using data-driven assessments to guide interventions to enhance transition readiness may minimize the retention of young adult patients in pediatrics and result in patients who are better prepared for adult care.