Needs assessment and patient-guided development of a video-based diabetic retinopathy patient education tool

To gain retina physicians’ and diabetic retinopathy (DR) patients’ perspectives on needs and opportunities in DR education, and then develop and pilot test an educational video. This study utilised qualitative interview data for video creation, and interview and survey data for assessment. This study was conducted in a single large academic medical centre. We conducted semi-structured interviews with attending retina physicians and DR patients (Cohort A) which were coded for themes about needs in DR patient education. Using these interviews, we designed and piloted a 6-minute user-centred animated video among a second patient cohort (Cohort B), who completed post-intervention interviews. Four physicians and 14 DR patients participated in the study. Themes from Cohort A included accessible information, early management, lifestyle factors and emotional context. Physician themes included effective communication, visual information delivery and individual-level diabetes management. Cohort B commented on the subsequently created video’s improved accessibility, engagement and supplementation of their existing DR knowledge. Physicians and patients showed an interest in video education and identified unique educational needs. We used these insights to create a video that demonstrated positive patient uptake. Close attention to retina physicians’ and DR patients’ perspectives can offer a valuable approach in developing materials to increase patients’ health knowledge. Within the context studied, videos may be more accessible and engaging than the use of traditional print-based education materials.