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Identifying the content for an item bank and computerized adaptive testing system to measure the impact of age-related macular degeneration on health-related quality of life.
Fenwick, Eva K; Lee, Ester P X; Man, Ryan E K; Ho, Kam Chun; Najjar, Raymond P; Milea, Dan; Teo, Kelvin Y C; Tan, Anna C S; Lee, Shu Yen; Yeo, Ian Yew San; Tan, Gavin S W; Mathur, Ranjana; Wong, Tien Yin; Cheung, Chui Ming Gemmy; Lamoureux, Ecosse L.
Afiliação
  • Fenwick EK; Singapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
  • Lee EPX; Duke-NUS Medical School, National University of Singapore, Singapore, Singapore.
  • Man REK; Singapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
  • Ho KC; Singapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
  • Najjar RP; Duke-NUS Medical School, National University of Singapore, Singapore, Singapore.
  • Milea D; Singapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
  • Teo KYC; UNSW Sydney, Sydney, Australia.
  • Tan ACS; Singapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
  • Lee SY; Duke-NUS Medical School, National University of Singapore, Singapore, Singapore.
  • Yeo IYS; Singapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
  • Tan GSW; Singapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
  • Mathur R; Duke-NUS Medical School, National University of Singapore, Singapore, Singapore.
  • Wong TY; Singapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
  • Cheung CMG; Duke-NUS Medical School, National University of Singapore, Singapore, Singapore.
  • Lamoureux EL; Singapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
Qual Life Res ; 31(4): 1237-1246, 2022 Apr.
Article em En | MEDLINE | ID: mdl-34562188
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.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Tipo de estudo: Observational_studies / Prevalence_studies / Qualitative_research / Risk_factors_studies Limite: Aged / Female / Humans / Male / Middle aged Idioma: En Ano de publicação: 2022 Tipo de documento: Article

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Tipo de estudo: Observational_studies / Prevalence_studies / Qualitative_research / Risk_factors_studies Limite: Aged / Female / Humans / Male / Middle aged Idioma: En Ano de publicação: 2022 Tipo de documento: Article