A Patient Journey Map for diabetic retinopathy was developed by synthesizing qualitative evidence from 25 studies and semi-structured interviews with 13 persons with DR, visually illustrating patient experiences and behaviors across screening, perioperative, and post-acute care phases to inform tailored healthcare interventions.
Key Findings
Methods
A comprehensive Patient Journey Map for diabetic retinopathy was successfully constructed through triangulation of narrative literature review findings and semi-structured interview data.
The study employed a two-phase qualitative evidence mapping and interview design
Phase 1 comprised a narrative literature review with systematic search analyzing 25 included studies using thematic synthesis
Phase 2 involved semi-structured interviews with 13 persons with DR at a Chinese university hospital analyzed using qualitative content analysis
Literature and interview findings were integrated through triangulation to construct the comprehensive map
Reporting followed ENTREQ guidelines and quality was assessed using CASP and GRADE-CERQual
Results
Twenty-five qualitative studies were identified that described patient experiences across three phases of diabetic retinopathy care, forming a preliminary framework.
The 25 included studies described patient experiences across screening, perioperative, and post-acute care phases
These phases collectively formed a preliminary framework for the Patient Journey Map
Thematic synthesis was used to analyze data from the included literature
The studies addressed experiences, emotions, and healthcare needs of persons with DR
Results
Semi-structured interviews with 13 persons with DR enriched the literature-derived findings and established a complete journey trajectory.
Interviews were conducted with 13 persons with DR at a Chinese university hospital
Qualitative content analysis was used to analyze interview data
The interview phase contextualized and enriched the synthesized evidence from the literature review
The interviews enabled establishment of a 'complete journey trajectory' beyond what the literature alone provided
Results
The Patient Journey Map visually illustrates patient experiences and behaviors across three distinct stages of the diabetic retinopathy care continuum.
The three stages identified were: screening, perioperative, and extended treatment (post-acute care) stages
The map captures experiences, emotions, and healthcare needs across these stages
The visual illustration was designed to support healthcare managers in optimizing service delivery
The map identifies service improvement opportunities consistent with people-centered health as emphasized by the World Health Organization
Conclusions
The Patient Journey Map provides a theoretical foundation for developing tailored diabetes care recommendations based on individual patient needs.
The evidence synthesized is described as providing 'a theoretical foundation for developing tailored diabetes care recommendations based on individual needs'
The map is intended to inform tailored healthcare interventions for persons with DR
Patient Journey Mapping is identified as contributing to improving healthcare management processes
The approach supports healthcare managers in optimizing service delivery for DR patients
Background
Despite extensive clinical research on diabetic retinopathy, the phases and dimensions of its healthcare management process were poorly understood prior to this study.
The study noted a gap between extensive clinical research on DR and understanding of patient-centered healthcare management processes
The WHO has emphasized a shift in focus from disease to patient needs, motivating this people-centered approach
Patient Journey Mapping had not previously been applied to synthesize the DR care experience comprehensively
The study aimed to address this gap by synthesizing qualitative evidence and conducting new interviews
What This Means
This research suggests that the experience of living with diabetic retinopathy (DR) — a diabetes-related eye condition that can cause vision loss — can be mapped across three main stages: screening and diagnosis, the period around surgery or procedures (perioperative), and extended or post-acute care. By combining findings from 25 published qualitative studies with in-depth interviews of 13 patients at a Chinese hospital, the researchers created a visual 'Patient Journey Map' that captures what patients go through, feel, and need at each stage of their care. This kind of mapping tool is designed to help healthcare teams and hospital managers see care from the patient's point of view rather than just a clinical perspective.
The Patient Journey Map developed in this study highlights that patients' emotional experiences, information needs, and practical challenges differ depending on where they are in the course of their treatment. For example, what a patient needs during initial screening is likely very different from what they need after a surgical procedure or during long-term follow-up. This research suggests that healthcare systems could use such maps to identify gaps in care and design more personalized, responsive services that better address what patients actually experience and need.
The broader significance of this work is methodological as well as practical: it demonstrates that combining a systematic review of existing qualitative research with new patient interviews, and then integrating those findings visually, can generate richer insights than either approach alone. The researchers followed international reporting standards (ENTREQ guidelines) and used established quality assessment tools, lending credibility to the synthesized framework. This research suggests that Patient Journey Mapping could be a useful tool for improving healthcare management in chronic disease settings, particularly where patient experiences and service quality are as important as clinical outcomes.
Wang N, Wei R, Liu G, Li J, Moreira P. (2026). Development of a patient journey map for diabetic retinopathy: exploring evidence from qualitative research.. BMC health services research. https://doi.org/10.1186/s12913-026-15325-0