Abstract
Purpose :
Vitreoretinal surgeon experience suggests retinal detachment (RD) has a heavy impact on patients’ quality of life (QoL). No study has yet described this impact nor how to measure it. To date, disease-specific patient-reported outcome measures (PROMs) developed for RD have lacked patient input. In this study, we set out to involve patients in the identification of QoL issues in RD and to develop a RD-specific PROM.
Methods :
The lived experience of people with RD were documented through semi-structured interviews with patients recruited from the Rotterdam Eye Hospital. Interview transcripts were coded into items (questions), using the NVivo 13 software, and grouped into QoL domains (themes) following the Eye-tem Bank methodology. The initial pool of items was reduced by removing items that were too similar to other items, too specific to have broad applicability and unclear items. Items were further refined through cognitive interviews with participants. These items were compared to those derived from previously published qualitative studies in RD, from existent RD-specific PROMs, and from a qualitative study in acquired retinal diseases (vascular occlusions, vitreomacular disorders, but not RD).
Results :
Interviews were conducted with 64 participants with RD (median age=60 years) at different stages of their disease trajectory (before surgery, after surgery, after multiple surgeries). We identified 1658 unique items which were classified into 11 putative QoL domains. After 3 rounds of item refinement and cognitive interviews, the final item set had 355 items belonging to 11 QoL domains: health concerns (45 items), emotional (45), activity limitation (45), coping (39), visual symptoms (33), inconveniences (33), social (28), ocular symptoms (23), general symptoms (23), economic (22) and mobility (19). The participants mentioned 277 unique items in addition to the 55 items already reported in the RD literature (84.7% new disease-specific items). The participants mentioned 231 unique items, additional to the 124 items already reported in the acquired retinal diseases study (65% new disease-specific items).
Conclusions :
Patients with RD live with a myriad of disease-specific QoL issues, the vast majority of which are described for the first time in this study. Most of these issues are unique to RD. The final set of items from this study can be used for a RD-specific PROM that can measure QoL in people with RD.
This abstract was presented at the 2024 ARVO Annual Meeting, held in Seattle, WA, May 5-9, 2024.