BMS engaged LIFT, in collaboration with FORWARD, to understand the challenges associated with patient retention in the Abatacept JIA Registry. The registry required no fewer than 900 patients by year-end 2019 and a 10-year follow-up with at least 500 participants. The transition from pediatric to adult care posed a major risk to long-term retention.
The study aimed to uncover the human truths behind transition—from the perspectives of patients, parents, and physicians—in order to inform strategies that would strengthen engagement and sustain registry participation. This required a better understanding of the lived experience of JIA patients as they moved from pediatric to adult care, the role of parents and physicians in facilitating or hindering a successful transition, how patients and families perceived participation in the Abatacept registry, and what motivated or discouraged their involvement. Ultimately, the study aimed to deliver actionable recommendations to reduce uncertainty, strengthen trust, and make registry participation meaningful to patients and families.
LIFT conducted a mixed-methods ethnographic study that combined in-home, semi-structured dyadic interviews with five adolescent/young adult JIA patients (ages 14–20) and their parents, alongside interviews with four pediatric rheumatologists.
Patients and parents discussed their experiences living with JIA, the emotional and practical demands of self-management, and their perceptions of registry participation.
Physicians provided critical insights into how transition is defined, when it is initiated, and the challenges they face in guiding patients from pediatric to adult care.
Interviews were audio- and video-recorded, transcribed verbatim, and analyzed across LIFT’s Five Dimensions of Emotional Truth™ (needs, fears, motivations, hopes, beliefs) to surface the deeper realities driving patient and caregiver decision-making.
The study uncovered profound insights into the emotional and developmental complexity of healthcare transition for JIA patients and their families. It revealed that transition is not simply the transfer of care but a multilayered process of maturation and self-management, requiring careful support from parents and physicians.
With these insights, BMS and FORWARD were able to reframe how they communicated the value of registry participation to patients and caregivers; strengthen advocacy and support programming, ensuring that patients felt guided, connected, and valued as members of the registry; and implement strategies to improve retention, reduce drop-off, and build stronger trust among adolescent patients moving into adult care.
This study not only helped BMS protect the integrity of their long-term registry but also advanced the industry’s understanding of how to meaningfully engage patients and families in research—cementing the role of empathy in evidence generation.
