Interrogating a framework for diabetic retinopathy screening adherence: Qualitative insights from a severely affected and under-adherent population

To validate and expand upon a framework of diabetic retinopathy (DR) screening adherence by examining barriers and facilitators among individuals with severe DR and those under-adherent to screening. From March 2021 to February 2022, we conducted eight remote semi-structured interviews with adults with diabetes across two participant populations: (1) participants with severe DR who had undergone procedures (n = 4) and (2) participants under-adherent to screening, defined as no eye exam in >1 year (n = 4). We recruited participants from the Yale Eye Center and community referrals. During the interviews, we collected demographic data and presented participants with a DR screening adherence framework previously developed by our group. We transcribed all interviews and conducted analyses using a hybrid deductive-inductive analytic approach informed by grounded theory techniques to identify recurring themes. Themes across both participant populations aligned with the existing framework, including vision status, emotional context, competing concerns, resource availability, cues to action, knowledge-creating experiences, and in-clinic experiences. The patient-doctor relationship emerged as a sub-theme of in-clinic experiences, highlighting the role of trust and communication in supporting sustained eye care engagement. At the individual level, participants with stable vision often perceived no need for screening. At the institutional and structural level, participants identified lack of insurance and transportation as significant barriers. These findings support the robustness of the DR screening adherence framework across varying levels of disease severity and engagement. Interventions that improve patient education, address structural barriers, and strengthen patient-doctor relationships may enhance screening adherence among populations at high risk for vision loss.