RESUMEN
Purpose: To report on the content generation and item refinement phases for a myopia refractive intervention-specific quality-of-life (QoL) item bank that will be operationalized using computerized adaptive testing. Methods: Myopia refractive intervention-specific QoL domains and items were generated from (1) a literature search of existing refractive-intervention QoL questionnaires; (2) semistructured interviews with myopic patients corrected using spectacles, contact lenses and/or refractive surgery (n = 32); (3) and myopia experts (n = 9) recruited from the Singapore National Eye Centre. After a thematic analysis, items were systematically refined and tested using cognitive interviews with 24 additional patients with corrected myopia. Results: Of the 32 participants with myopia interviewed (mean ± standard deviation age, 35.6 ± 9.0 years; 71.9% female; 78.1% Chinese), 12 (37.5%) wore spectacles, 7 (21.9%) used contact lenses, and 20 (62.5%) had undergone laser refractive surgery. Initially, 912 items within 7 independent QoL domains were identified. After refinement, 204 items were retained, including those relating to mobility challenges and work-related difficulties that are not well-represented in current refractive intervention-specific questionnaires. Conclusions: Through a rigorous item generation and selection process, we have developed a 204-item and 7-domain myopia refractive intervention-specific item bank that will now undergo rigorous psychometric testing to generate item calibrations for the validation of a novel computerized adaptive testing instrument designed for use in research and routine clinical practice. Translational Relevance: Once psychometrically validated and operationalized using computerized adaptive testing, this myopia refractive intervention-specific instrument will enable researchers and clinicians to quickly and comprehensively assess the impact of myopic refractive interventions across seven QoL domains.
Asunto(s)
Miopía , Calidad de Vida , Humanos , Femenino , Adulto , Masculino , Calidad de Vida/psicología , Refracción Ocular , Miopía/diagnóstico , Miopía/terapia , Pruebas de Visión , Encuestas y CuestionariosRESUMEN
BACKGROUND: Age-related macular degeneration, a prevalent degenerative retinal disease, is associated with non-visual and psychosocial impairments that may affect sleep. In this systematic review, we evaluated associations between age-related macular degeneration (AMD) and sleep, highlighted knowledge gaps and provided evidence-based recommendations to clinicians to enable holistic management of AMD patients. METHODS: We searched PubMed, Embase and the Cochrane Central registries for papers published before May 2022. Non-English, qualitative studies and grey literature were excluded. Studies evaluating the association between AMD and sleep (including sleep disorders like insomnia and sleep apnea), and vice versa, were included. The quality of shortlisted studies was evaluated using the Newcastle Ottawa Scale. RESULTS: Six (two case-control studies, three longitudinal cohort studies and one cross-sectional study) of 551 studies were included in this review. Four studies found that AMD was associated with increased rates of sleep apnea and poorer reported sleep quality, while five studies showed that patients with sleep apnea or insomnia were at higher risk of developing AMD. Associations between self-reported sleep quantity and AMD were conflicting. No study evaluated the relationship between AMD and sleep using objective sleep assessment tools. CONCLUSION: Only a limited number of studies investigated associations between AMD and sleep. These studies suggest a bidirectional relationship between AMD and sleep dysfunction yet disagree on the relationship between sleep quantity and the likelihood of AMD. Additional studies, using objective characterisation of sleep in patients with AMD are required to confirm these findings.
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Degeneración Macular , Síndromes de la Apnea del Sueño , Trastornos del Inicio y del Mantenimiento del Sueño , Trastornos del Sueño-Vigilia , Humanos , Trastornos del Inicio y del Mantenimiento del Sueño/complicaciones , Trastornos del Inicio y del Mantenimiento del Sueño/epidemiología , Estudios Transversales , Estudios Longitudinales , Degeneración Macular/complicaciones , Degeneración Macular/diagnóstico , Degeneración Macular/epidemiología , Trastornos del Sueño-Vigilia/complicaciones , SueñoRESUMEN
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.