Compassionate Care and Organization of Healthcare Services for a Successful Transition in Rheumatology

Overview

The transition from pediatric to adult care is a critical period for young people with chronic inflammatory rheumatic diseases (CIRD) and is associated with risks of poor self-management, loss to follow-up, and disease worsening. Although structured transition programs have been recommended, real-world data on their effectiveness in rheumatology remain limited. Since 2018, a structured transition program has been implemented at Bicêtre University Hospital (AP-HP, France), combining early transition preparation, a therapeutic patient education (TPE) workshop, and a joint pediatric-adult transition consultation. Some patients benefit from both components, while others receive a transition consultation only. The BOOST-R study is a monocentric, non-interventional observational study designed to evaluate the impact of different transition modalities on self-management after transfer to adult care. The primary objective is to compare transition readiness, assessed using the validated French version of the Transition Readiness Assessment Questionnaire (TRAQ-FR), between patients who received a TPE workshop plus a transition consultation and those who received a transition consultation only. Secondary objectives include evaluating continuity of care after transition, identifying factors associated with successful transition, assessing the contribution of the RESRIP support network, and describing patients who did not benefit from structured transition support.

The transition from pediatric to adult healthcare services represents a vulnerable period for adolescents and young adults with chronic inflammatory rheumatic diseases (CIRD). This phase is associated with increased risks of poor treatment adherence, disruption of follow-up, and adverse disease outcomes. While structured transition programs have been shown to improve patient autonomy and continuity of care, evidence in rheumatology remains limited, particularly regarding real-life effectiveness after transfer to adult care. At Bicêtre University Hospital (AP-HP, France), a structured transition program has been progressively implemented since 2018 in collaboration with adult rheumatology and internal medicine departments. This program includes early transition information, progressive empowerment, a therapeutic patient education (TPE) workshop (MIRAJE program), and a joint pediatric-adult transition consultation. In parallel, some patients benefit from additional educational and administrative support provided by the RESRIP network after transition. The BOOST-R study is a monocentric, observational, non-interventional study conducted in the pediatric rheumatology department of Bicêtre University Hospital. Adult patients with a diagnosis of CIRD who were followed in pediatric rheumatology and participated in a joint pediatric-adult transition consultation between 2018 and 2024 are eligible. Patients are contacted by postal mail and invited to complete an online questionnaire after receiving study information and having the opportunity to express non-opposition. The primary outcome is transition readiness assessed using the French validated 20-item Transition Readiness Assessment Questionnaire (TRAQ-FR). The primary analysis compares the mean total TRAQ-FR score between patients who benefited from a TPE workshop plus a transition consultation and those who received a transition consultation only. Higher TRAQ-FR scores indicate better self-management and readiness for adult care. Secondary outcomes include indicators of continuity of care after transition, such as number of adult care visits, delay to first adult visit, treatment adherence, and disease flares. Additional analyses will explore demographic, clinical, social, and educational factors associated with successful transition, evaluate the impact of support by the RESRIP network, and describe patients who did not benefit from structured transition interventions. Statistical analyses will include descriptive analyses and multivariable regression models adjusted for relevant confounders, including age, sex, underlying disease, socio-professional status, and time since transition. Sensitivity analyses using propensity score methods will be performed to account for the non-randomized design. The study involves no intervention and no additional risk for participants. Data are collected and managed in accordance with applicable French and European data protection regulations.