Development of a patient journey map for diabetic retinopathy: exploring evidence from qualitative research

The World Health Organization has emphasized people-centered health, shifting focus from disease to patient needs. Patient Journey Mapping has emerged as a valuable methodological approach to support healthcare and nursing management by visualizing patient experiences and identifying service improvement opportunities. Despite extensive clinical research on diabetic retinopathy (DR), the phases and dimensions of its healthcare management process remain poorly understood. This study aimed to: (a) synthesize existing qualitative evidence on the experiences, emotions, and healthcare needs of persons with DR across screening, perioperative, and extended treatment stages; (b) conduct semi-structured interviews to contextualize and enrich the synthesized evidence; and (c) develop an integrated Patient Journey Map to inform tailored healthcare interventions.

This study employed a two-phase qualitative evidence mapping and interview design. Phase 1 comprised a narrative literature review with systematic search to map existing qualitative evidence, with data analyzed using thematic synthesis. Phase 2 involved semi-structured interviews with 13 persons with DR at a Chinese university hospital, with data analyzed using qualitative content analysis. Literature and interview findings were integrated through triangulation to construct a comprehensive Patient Journey Map. Quality was assessed using CASP and GRADE-CERQual; reporting followed ENTREQ guidelines.

Twenty-five studies were included, describing patient experiences across screening, perioperative, and post-acute care phases, forming a preliminary framework. Interviews with 13 persons with DR enriched these findings and established a complete journey trajectory.

The proposed Patient Journey Map visually illustrates patient experiences and behaviors across the care continuum. This evidence provides a theoretical foundation for developing tailored diabetes care recommendations based on individual needs. Patient Journey Mapping contributes to improving healthcare management processes and supports healthcare managers in optimizing service delivery.

Not applicable.