TY - JOUR
T1 - 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
AU - Fenwick, Eva K.
AU - Lee, Ester P.X.
AU - Man, Ryan E.K.
AU - Ho, Kam Chun
AU - Najjar, Raymond P.
AU - Milea, Dan
AU - Teo, Kelvin Y.C.
AU - Tan, Anna C.S.
AU - Lee, Shu Yen
AU - Yeo, Ian Yew San
AU - Tan, Gavin S.W.
AU - Mathur, Ranjana
AU - Wong, Tien Yin
AU - Cheung, Chui Ming Gemmy
AU - Lamoureux, Ecosse L.
N1 - Funding Information:
This study was funded by a National Medical Research Council Open Fund Large Collaborative Grant (NMRC/OFLCG/004a/2018). Professor Lamoureux is supported by the NMRC Senior-Clinician Scientist Awards (#NMRC/CSASI/0009/2016) and Dr. Man is supported by the NMRC Transition Award (#MOH-TA19may-0002). The funding organizations had no role in the design or conduct of this research or preparation of this manuscript.
Publisher Copyright:
© 2021, The Author(s), under exclusive licence to Springer Nature Switzerland AG.
PY - 2022/4
Y1 - 2022/4
N2 - 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.
AB - 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.
KW - Age-related macular degeneration
KW - Computerized adaptive testing
KW - Item bank
KW - Qualitative
KW - Quality of life
UR - http://www.scopus.com/inward/record.url?scp=85115715953&partnerID=8YFLogxK
U2 - 10.1007/s11136-021-02989-w
DO - 10.1007/s11136-021-02989-w
M3 - Article
AN - SCOPUS:85115715953
SN - 0962-9343
VL - 31
SP - 1237
EP - 1246
JO - Quality of Life Research
JF - Quality of Life Research
IS - 4
ER -
