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      Quality of life impact of eye diseases: a Save Sight Registries study

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          Abstract

          Background

          The objectives of this study were to evaluate the quality‐of‐life (QoL) impact of eye diseases (keratoconus; neovascular age‐related macular degeneration, AMD; retinal vein occlusion, RVO; and diabetic macular edema, DME) using the Impact of Vision Impairment (IVI) questionnaire, and to determine the relationship between the IVI scores and visual acuity.

          Methods

          This cross‐sectional, multicentre, real‐world study utilised the prospective, web‐based Save Sight Registries. The IVI was completed by 1557 patients: 307 with keratoconus, 1049 with AMD, 148 with RVO and 53 with DME. Statistical analysis included Rasch analysis, Welch t‐test, one‐way ANOVA, Tukey's test, Pearson correlation, and multiple regression.

          Results

          The IVI scales (Overall; Visual Function, VF; Emotional, EM) had robust psychometric properties. The keratoconus patients had the worst Overall (adjusted mean: 48.2 vs. DME 58.8, RVO 64.6, AMD 67.6 units), VF (47.7 vs. DME 59.4, RVO 65.9, AMD 68.9 units) and EM (50.8 vs. DME 63.1, RVO 69.2, AMD 71.8 units) scores (all p < 0.05).

          The IVI scales scores weakly correlated with better and worse eye visual acuity (Pearson's r 0.24–0.39, all p < 0.05). The correlations were similar in the better eye (Overall 0.35, VF 0.39, EM 0.24) and the worse eye (Overall 0.31, VF 0.33, EM 0.25) visual acuity. Correlations with visual acuity were stronger for VF than for the EM scores.

          Conclusions

          The IVI was a psychometrically robust QoL questionnaire. Keratoconus patients had worse IVI scores than patients with retinal diseases. The low strength of correlations between visual acuity and QoL scores, although statistically significant, suggested that a complex relationship exists.

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          Interpretation of changes in health-related quality of life: the remarkable universality of half a standard deviation.

          Geoffrey R Norman, Jeff A. Sloan, Kathleen Wyrwich (2003)
          A number of studies have computed the minimally important difference (MID) for health-related quality of life instruments. To determine whether there is consistency in the magnitude of MID estimates from different instruments. We conducted a systematic review of the literature to identify studies that computed an MID and contained sufficient information to compute an effect size (ES). Thirty-eight studies fulfilled the criteria, resulting in 62 ESs. For all but 6 studies, the MID estimates were close to one half a SD (mean = 0.495, SD = 0.155). There was no consistent relationship with factors such as disease-specific or generic instrument or the number of response options. Negative changes were not associated with larger ESs. Population-based estimation procedures and brief follow-up were associated with smaller ESs, and acute conditions with larger ESs. An explanation for this consistency is that research in psychology has shown that the limit of people's ability to discriminate over a wide range of tasks is approximately 1 part in 7, which is very close to half a SD. In most circumstances, the threshold of discrimination for changes in health-related quality of life for chronic diseases appears to be approximately half a SD.
          Article 0 comments Cited 631 times – based on 0 reviews     Review now
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            Rasch Analysis for Instrument Development: Why, When, and How?

            William Boone (2016)
            Rasch psychometric techniques can be used to guide the development and analysis of tests and surveys. Rasch techniques also can be used to explain the meaning of a test score or survey score. Of great interest to researchers and instructors is that Rasch techniques allow different forms of a test to be developed.
            Article 0 comments Cited 109 times – based on 0 reviews     Review now
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              Combined life satisfaction of persons with stroke and their caregivers: associations with caregiver burden and the impact of stroke

              Aileen L Bergström, Gunilla Eriksson, Lena von Koch … (2011)
              Background Little is known about the life satisfaction of the person with stroke combined with their caregiver, i.e. the dyad, despite the fact that life satisfaction is an important rehabilitation outcome. The aim of this study was to describe the dyads combined life satisfaction and to understand this in relationship to the perceived impact of stroke in everyday life and caregiver burden. Methods In this cross-sectional study, the life satisfaction of persons and their informal caregivers was measured in 81 dyads one year post stroke. Their global life satisfaction, measured with LiSat-11, was combined to a dyad score and the dyads were then categorized as satisfied, dissatisfied or discordant. The groups were compared and analyzed regarding levels of caregiver burden, measured with the Caregiver Burden scale, and the perceived impact of stroke in everyday life, measured with the Stroke Impact Scale (SIS). Results The satisfied dyads comprised 40%, dissatisfied 26% and those that were discordant 34%. The satisfied dyads reported a significantly lower impact of the stroke in everyday life compared with the dyads that were not satisfied. As expected, dyads that were not satisfied reported a significantly greater caregiver burden compared with the satisfied dyads. The discordant group was further broken down into a group of dissatisfied and satisfied caregivers. The caregivers that were not satisfied in the discordant group perceived a significantly greater level of caregiver burden compared with the satisfied group. Even caregivers who were satisfied with life but whose care recipients were not satisfied reported caregiver burden. Conclusions Measuring combined life satisfaction provides a unique focus and appears to be a feasible way of attaining the dyads' perspective. The findings suggest that those dyads with a discordant life satisfaction could be vulnerable because of the caregivers' reported caregiver burden. These findings support the importance of a dyadic perspective and add to the understanding of the reciprocal influences between the caregiver and recipient. This knowledge has clinical implications and contributes to the identification of possible vulnerable dyads in need of tailored support.
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                Author and article information

                Contributors
                Himal Kandel:
                ORCID: https://orcid.org/0000-0002-6745-6411
                himal.kandel@sydney.edu.au
                Journal
                Journal ID (nlm-ta): Clin Exp Ophthalmol
                Journal ID (iso-abbrev): Clin Exp Ophthalmol
                Journal ID (doi): 10.1111/(ISSN)1442-9071
                Journal ID (publisher-id): CEO
                Title: Clinical & Experimental Ophthalmology
                Publisher: John Wiley & Sons Australia, Ltd (Melbourne )
                ISSN (Print): 1442-6404
                ISSN (Electronic): 1442-9071
                Publication date (Electronic): 07 February 2022
                Publication date (Print): May-Jun 2022
                Volume: 50
                Issue: 4 ( doiID: 10.1111/ceo.v50.4 )
                Pages: 386-397
                Affiliations
                [ 1 ] Save Sight Institute, Faculty of Medicine and Health The University of Sydney Sydney New South Wales Australia
                [ 2 ] Department of Ophthalmology Padua‐Camposampiero Hospital Padua Italy
                [ 3 ] Centar za zastitu vida" Pale Eastern Sarajevo Bosnia and Herzegovina
                [ 4 ] Singapore National Eye Centre Singapore Eye Research Institute Singapore Singapore
                [ 5 ] Cornea & External Eye Diseases, Hospital Universitario Ramón y Cajal IRYCIS Madrid Spain
                [ 6 ] Ophthalmology University Hospital Montpellier Montpellier France
                Author notes
                [*] [* ] Correspondence

                Dr Himal Kandel, The University of Sydney, Save Sight Institute, Sydney Eye Hospital, South Block, Level 1, 8 Macquarie Street, NSW 2000, Australia.

                Email: himal.kandel@ 123456sydney.edu.au

                Author information
                https://orcid.org/0000-0002-6745-6411
                https://orcid.org/0000-0001-9070-9803
                https://orcid.org/0000-0002-7458-7081
                https://orcid.org/0000-0001-5675-0861
                https://orcid.org/0000-0001-8580-0274
                https://orcid.org/0000-0001-6699-1765
                Article
                Publisher ID: CEO14050
                DOI: 10.1111/ceo.14050
                PMC ID: 9303885
                PubMed ID: 35080803
                SO-VID: c480cf95-1e88-4c22-8859-ab31fc4f9184
                Copyright © © 2022 The Authors. Clinical & Experimental Ophthalmology published by John Wiley & Sons Australia, Ltd on behalf of Royal Australian and New Zealand College of Ophthalmologists.
                License:

                This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                History
                Date revision received : 10 January 2022
                Date received : 28 November 2021
                Date accepted : 11 January 2022
                Page count
                Figures: 2, Tables: 4, Pages: 12, Words: 7945
                Funding
                Funded by: Claffy Foundation
                Funded by: Keratoconus Australia
                Funded by: Mr Larry Kornhauser, OAM
                Funded by: Ophthalmic Research Institute of Australia , doi 10.13039/501100001108;
                Funded by: Sydney Medical School Foundation , doi 10.13039/501100007811;
                Funded by: Royal Australian and New Zealand College of Ophthalmologists Eye Foundation , doi 10.13039/501100007811;
                Funded by: National Health and Medical Research Council , doi 10.13039/501100000925;
                Categories
                Subject: Original Article
                Subject: ORIGINAL ARTICLES
                Subject: Clinical Science
                Custom metadata
                source-schema-version-number 2.0
                cover-date May/June 2022
                details-of-publishers-convertor Converter:WILEY_ML3GV2_TO_JATSPMC version:6.1.7 mode:remove_FC converted:21.07.2022

                Keywords: age‐related macular degeneration,diabetic macular edema,emotional,keratoconus,patient‐reported outcomes,quality of life,questionnaire,rasch analysis,retinal vein occlusion,visual function
                Data availability:
                Keywords: age‐related macular degeneration, diabetic macular edema, emotional, keratoconus, patient‐reported outcomes, quality of life, questionnaire, rasch analysis, retinal vein occlusion, visual function

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