Characterizing Psychological Distress in Patients With Diabetic Retinal Disease: The Development of a Novel Patient-Reported Outcome Measure

Authors

Rafid Farjo
Timothy Mayotte
Alex Z. Zmejkoski
Gabrielle Lacy
Jessica Stout
Krystal Day Kao
Dana H. Chung
Mahsaw Mansoor
Mark W. Johnson
Joshua Grant, Corewell Health East

Document Type

Conference Proceeding

Publication Date

6-2025

Publication Title

Investigative Ophthalmology and Visual Science

Abstract

Purpose : Diabetic Retinal Disease (DRD) leads to vision-related distress and anxiety that often is undiscovered or unaddressed by eye care providers. This project aims to develop a patient-reported outcome measure (PRO) that better captures and quantifies the vision-related psychological distress experienced by patients with DRD to improve current and inform future interventions.

Methods : As the first step toward creation of a PRO, we constructed a 76-item open-ended in-depth interview guide using input from a literature review as well as four focus groups conducted with experts in the field. A sample of 77 adult patients with DRD were interviewed. Participants represented the full disease spectrum of DRD including mild, moderate, and severe non-proliferative diabetic retinopathy (NPDR), proliferative diabetic retinopathy (PDR), and diabetic macular edema. In-depth interviews were recorded, transcribed, and coded using multiple coders and grounded theory in Atlas.ti software (version 9.5.4).

Results : Several common psychological themes emerged through qualitative analysis (Table 1). Patients with PDR as compared to patients with NPDR endorsed higher levels of distress and anxiety in all domains (Cohen’s w effect size range 0.04 to 0.42) with two domains, vision related worry (w = 0.43, p = 0.0002) and laser treatment anxiety (w = 0.40, p = 0.0004) approaching large effect sizes and reaching statistical significance on a 95% confidence interval.

Conclusions : There remains an unmet need to address the psychological distress caused by living with vision impairment due to diabetes. These findings will be used to identify and examine vision-related worry and distress by population and disease progression, advise new interventions and treatments, and provide a better understanding of benefits and barriers to these possible new treatments for DRD.

Volume

66

Issue

8

First Page

1122

Comments

Association for Research in Vision and Ophthalmology ARVO Annual Meeting, May 4-8, 2025, Salt Lake City, UT

Last Page

1122

Recommended Citation

Farjo R, Mayotte T, Zmejkoski AZ, Lacy G, Stout J, Kao KD, et al. [Grant J]. Characterizing psychological distress in patients with diabetic retinal disease: the development of a novel patient-reported outcome measure. Invest Ophthal Vis Sci. 2025 Jun;66(8):1122.