Understanding quality of life impact in people with retinal vein occlusion: a qualitative inquiry

Abstract

Background

Although being the second most common sight‐threatening retinal vascular disease after diabetic retinopathy, the patient‐centred impact of retinal vein occlusion has not been well studied. This study aims to understand the quality of life issues in people with retinal vein occlusion using a qualitative methodology.

Methods

In‐depth semi‐structured interviews were conducted with 17 patients with retinal vein occlusion. All the interviews were digitally recorded and transcribed verbatim. An inductive analytic approach based on the constant comparative method was used for coding, aggregation, and theme development. The qualitative analysis was done using the software NVivo.

Results

Participants had a median age of 73-years (range 34–85-years; females, 71 per cent). Six quality of life themes were identified: concerns about the disease progression and treatment outcome (health concerns), emotional responses to the disease (emotional), experiencing a range of symptoms (symptoms), inability to do things as before (activity limitation), adapting to the visual loss (coping), and inconveniences due to the eye condition (convenience). Participants often felt that lasers and injections did not improve their vision. They feared that their eye condition may come back, or the other eye may be affected. They experienced a range of visual symptoms that affected their day‐to‐day performance, particularly reading small print, and driving at night. Having multiple treatments and frequent eye appointments were major sources of inconvenience. Patients adopted several coping strategies to manage the stress associated with visual loss.

Conclusions

This study shows that several aspects of quality of life are compromised in people with retinal vein occlusion. The findings of this study will be used to identify the item content for a vitreoretinal disease‐specific quality of life item bank.

Key words:

• interviews
• patient‐reported outcome measures
• qualitative
• quality of life
• retinal vein occlusion

ACKNOWLEDGEMENTS

This project was funded by the Australian National Health and Medical Research Council (grant no. 1031838). Mallika Prem Senthil is supported by the Australian Government Research Training Scholarship program. Our sincere thanks to the staff of The Royal Adelaide Hospital and The Queen Elizabeth Hospital. Our special thanks to our Flinders Optometry research assistant.

Additional information

Funding

Australian National Health and Medical Research Council

Royal Adelaide Hospital