DEVELOPMENT OF THE RETINAL VASCULAR DISEASE QUESTIONNAIRE TO ASSESS VISUAL SYMPTOMS, VISION-RELATED IMPACTS, AND TREATMENT SATISFACTION IN DR, DME, AND NAMD
Author(s)
Salena Marie Preciado, MSc, PhD1, Robert Patrick Finger, MD2, Larissa Moniz, PhD3, Cynthia Owsley, PhD4, Nabin Paudel, PhD5, Megan Mayhew, MS6, Niamh O'Brien, BSc6, Abigail Renwick, BSc6, Melissa Barclay, MS6, Jessica Flynn, BSc6, Rebecca Williams, MS6, Zdenka Haskova, MD, PhD7, Jacqueline Ackermann, MS8, Kate Sully, PhD9, Jessica Braid, MS9, Dawn Sim, PhD10.
1Senior PCOR Scientist, Genentech/Roche, San Francisco, CA, USA, 2University of Heidelberg, Heidelberg, Germany, 3Fighting Blindness in Canada, Toronto, ON, Canada, 4University of Alabama at Birmingham, Birmingham, AL, USA, 5Retina International, Dublin, Ireland, 6Adelphi Values Patient-Centered Outcomes, Cheshire, United Kingdom, 7Genentech, San Francisco, CA, USA, 8F. Hoffmann-La Roche Ltd, Basel, Switzerland, 9Roche Products Ltd, Welwyn Garden City, United Kingdom, 10Genentech, A Member of the Roche Group, San Francisco, CA, USA.
1Senior PCOR Scientist, Genentech/Roche, San Francisco, CA, USA, 2University of Heidelberg, Heidelberg, Germany, 3Fighting Blindness in Canada, Toronto, ON, Canada, 4University of Alabama at Birmingham, Birmingham, AL, USA, 5Retina International, Dublin, Ireland, 6Adelphi Values Patient-Centered Outcomes, Cheshire, United Kingdom, 7Genentech, San Francisco, CA, USA, 8F. Hoffmann-La Roche Ltd, Basel, Switzerland, 9Roche Products Ltd, Welwyn Garden City, United Kingdom, 10Genentech, A Member of the Roche Group, San Francisco, CA, USA.
OBJECTIVES: This cross-sectional qualitative interview study aimed to: 1) identify key visual symptoms and vision-related impacts experienced by individuals with diabetic retinopathy (DR), diabetic macular edema (DME), and neovascular age-related macular degeneration (nAMD); 2) explore factors influencing treatment satisfaction; and 3) evaluate the content validity of the Retinal Vascular Disease Questionnaire (RVQ).
METHODS: Combined concept elicitation and cognitive debriefing interviews were conducted with 55 US adults (DR=15, DME=20, nAMD=20). The RVQ assesses visual symptoms and vision-related impacts and includes a bolt-on treatment satisfaction domain. Thematic and framework analysis, supported by literature review and expert input, informed conceptual model development and evaluation of RVQ relevance and comprehensiveness.
RESULTS: Findings were consistent across indications. Commonly reported visual symptoms included difficulties seeing in dim light (100%), blurred vision (98.2%), and problems with glare (94.5%). Vision-related impacts on activities of daily living (100%), emotional well-being (94.6%), mobility (90.9%), independence (90.9%), and social functioning (83.6%) were also reported. Perceived efficacy (80.6%) was the primary driver for stopping or switching treatment; other factors included side effects, preference for less invasive options, and cost/affordability. Key treatment goals included improving vision/halting progression (41.7%) and achieving long-term disease control (38.9%). Participants demonstrated clear understanding of visual symptom (n≥46/55; ≥83.6%), vision-related impact (n≥47/55; ≥85.5%), and treatment satisfaction items (n≥15/18; ≥83.3%). Most RVQ items were endorsed as relevant by more than half of participants.
CONCLUSIONS: Participants across DR, DME, and nAMD, reported similar symptom and impact profiles, with treatment satisfaction closely tied to perceived efficacy and treatment burden. This study supports content validity of the RVQ and its use for assessing the patient experience in retinal vascular diseases trials.
METHODS: Combined concept elicitation and cognitive debriefing interviews were conducted with 55 US adults (DR=15, DME=20, nAMD=20). The RVQ assesses visual symptoms and vision-related impacts and includes a bolt-on treatment satisfaction domain. Thematic and framework analysis, supported by literature review and expert input, informed conceptual model development and evaluation of RVQ relevance and comprehensiveness.
RESULTS: Findings were consistent across indications. Commonly reported visual symptoms included difficulties seeing in dim light (100%), blurred vision (98.2%), and problems with glare (94.5%). Vision-related impacts on activities of daily living (100%), emotional well-being (94.6%), mobility (90.9%), independence (90.9%), and social functioning (83.6%) were also reported. Perceived efficacy (80.6%) was the primary driver for stopping or switching treatment; other factors included side effects, preference for less invasive options, and cost/affordability. Key treatment goals included improving vision/halting progression (41.7%) and achieving long-term disease control (38.9%). Participants demonstrated clear understanding of visual symptom (n≥46/55; ≥83.6%), vision-related impact (n≥47/55; ≥85.5%), and treatment satisfaction items (n≥15/18; ≥83.3%). Most RVQ items were endorsed as relevant by more than half of participants.
CONCLUSIONS: Participants across DR, DME, and nAMD, reported similar symptom and impact profiles, with treatment satisfaction closely tied to perceived efficacy and treatment burden. This study supports content validity of the RVQ and its use for assessing the patient experience in retinal vascular diseases trials.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR256
Topic
Patient-Centered Research
Topic Subcategory
Instrument Development, Validation, & Translation, Patient-reported Outcomes & Quality of Life Outcomes
Disease
Sensory System Disorders (Ear, Eye, Dental, Skin)