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ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2022

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.

Eva K Fenwick, Ester P X Lee, Ryan E K Man, Kam Chun Ho, Raymond P Najjar, Dan Milea, Kelvin Y C Teo, Anna C S Tan, Shu Yen Lee, Ian Yew San Yeo and 5 more

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Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. Review
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

15 authors.

Eva K FenwickSingapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
Ester P X LeeSingapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
Ryan E K ManSingapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
Kam Chun HoSingapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
Raymond P NajjarSingapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
Dan MileaSingapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
Kelvin Y C TeoSingapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
Anna C S TanSingapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
Shu Yen LeeSingapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
Ian Yew San YeoSingapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
Gavin S W TanSingapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
Ranjana MathurSingapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
Tien Yin WongSingapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
Chui Ming Gemmy CheungSingapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore.
Ecosse L LamoureuxSingapore Eye Research Institute, Singapore National Eye Centre, The Academia, 20 College Road, Level 6, Singapore, 169856, Singapore. ecosse.lamoureux@duke-nus.edu.sg.ORCID http://orcid.org/0000-0001-8674-5705

Funding

National Medical Research Council #MOH-TA19may-0002National Medical Research Council #NMRC/CSASI/0009/2016National Medical Research Council NMRC/OFLCG/004a/2018
6 · The paper itself

Abstract

purposeWe 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.

methodsIn 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.

resultsOf 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.

conclusionOur 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.

Indexed as

Macular DegenerationQuality of LifeAgedComputerized Adaptive TestingCross-Sectional StudiesFemaleHumansMaleMiddle AgedPsychometricsSurveys and QuestionnairesAge-related macular degenerationComputerized adaptive testingItem bankQualitativeQuality of life

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.