Eva K Fenwick1,2, Ester P X Lee1, Ryan E K Man1,2, Kam Chun Ho1,3, Raymond P Najjar1,2, Dan Milea1, Kelvin Y C Teo1,2, Anna C S Tan1,2, Shu Yen Lee1,2, Ian Yew San Yeo1,2, Gavin S W Tan1,2, Ranjana Mathur1,2, Tien Yin Wong1,2, Chui Ming Gemmy Cheung1, Ecosse L Lamoureux4,5,6. 1. Singapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore. 2. Duke-NUS Medical School, National University of Singapore, Singapore, Singapore. 3. UNSW Sydney, Sydney, Australia. 4. Singapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore. ecosse.lamoureux@duke-nus.edu.sg. 5. Duke-NUS Medical School, National University of Singapore, Singapore, Singapore. ecosse.lamoureux@duke-nus.edu.sg. 6. The University of Melbourne, Parkville, Australia. ecosse.lamoureux@duke-nus.edu.sg.
Abstract
PURPOSE: We are developing an age-related macular degeneration (AMD) health-related quality of life (HRQoL) item bank, applicable to Western and Asian populations. We report primarily on content generation and refinement, but also compare the HRQoL issues reported in our study with Western studies and current AMD-HRQoL questionnaires. METHODS: In this cross-sectional, qualitative study of AMD patients attending the Singapore National Eye Centre (May-December 2019), items/domains were generated from: (1) AMD-specific questionnaires; (2) published articles; (3) focus groups/semi-structured interviews with AMD patients (n = 27); and (4) written feedback from retinal experts. Following thematic analysis, items were systematically refined to a minimally representative set and pre-tested using cognitive interviews with 16 AMD patients. RESULTS: Of the 27 patients (mean ± standard deviation age 67.9 ± 7.0; 59.2% male), 18 (66.7%), two (7.4%), and seven (25.9%) had no, early-intermediate, and late/advanced AMD (better eye), respectively. Whilst some HRQoL issues, e.g. activity limitation, mobility, lighting, and concerns were similarly reported by Western patients and covered by other questionnaires, others like anxiety about intravitreal injections, work tasks, and financial dependency were novel. Overall, 462 items within seven independent HRQoL domains were identified: Activity limitation, Lighting, Mobility, Emotional, Concerns, AMD management, and Work. Following item refinement, items were reduced to 219, with 31 items undergoing amendment. CONCLUSION: Our 7-domain, 219-item AMD-specific HRQoL instrument will undergo psychometric testing and calibration for computerized adaptive testing. The future instrument will enable users to precisely, rapidly, and comprehensively quantify the HRQoL impact of AMD and associated treatments, with item coverage relevant across several populations.
PURPOSE: We are developing an age-related macular degeneration (AMD) health-related quality of life (HRQoL) item bank, applicable to Western and Asian populations. We report primarily on content generation and refinement, but also compare the HRQoL issues reported in our study with Western studies and current AMD-HRQoL questionnaires. METHODS: In this cross-sectional, qualitative study of AMD patients attending the Singapore National Eye Centre (May-December 2019), items/domains were generated from: (1) AMD-specific questionnaires; (2) published articles; (3) focus groups/semi-structured interviews with AMD patients (n = 27); and (4) written feedback from retinal experts. Following thematic analysis, items were systematically refined to a minimally representative set and pre-tested using cognitive interviews with 16 AMD patients. RESULTS: Of the 27 patients (mean ± standard deviation age 67.9 ± 7.0; 59.2% male), 18 (66.7%), two (7.4%), and seven (25.9%) had no, early-intermediate, and late/advanced AMD (better eye), respectively. Whilst some HRQoL issues, e.g. activity limitation, mobility, lighting, and concerns were similarly reported by Western patients and covered by other questionnaires, others like anxiety about intravitreal injections, work tasks, and financial dependency were novel. Overall, 462 items within seven independent HRQoL domains were identified: Activity limitation, Lighting, Mobility, Emotional, Concerns, AMD management, and Work. Following item refinement, items were reduced to 219, with 31 items undergoing amendment. CONCLUSION: Our 7-domain, 219-item AMD-specific HRQoL instrument will undergo psychometric testing and calibration for computerized adaptive testing. The future instrument will enable users to precisely, rapidly, and comprehensively quantify the HRQoL impact of AMD and associated treatments, with item coverage relevant across several populations.
Authors: Robert P Finger; Eva Fenwick; Konrad Pesudovs; Manjula Marella; Ecosse L Lamoureux; Frank G Holz Journal: Ophthalmology Date: 2012-09-08 Impact factor: 12.079
Authors: Wan Ling Wong; Xinyi Su; Xiang Li; Chui Ming G Cheung; Ronald Klein; Ching-Yu Cheng; Tien Yin Wong Journal: Lancet Glob Health Date: 2014-01-03 Impact factor: 26.763
Authors: Jan Mitchell; James S Wolffsohn; Alison Woodcock; Stephen J Anderson; Carolyn V McMillan; Timothy Ffytche; Martin Rubinstein; Winfried Amoaku; Clare Bradley Journal: Health Qual Life Outcomes Date: 2005-04-14 Impact factor: 3.186