Chen, Benson, Galus, Tomasz, Archer, Stephanie, Tadic, Valerija ORCID: https://orcid.org/0000-0003-3982-0340, Horton, Mike, Pesudovs, Konrad, Braithwaite, Tasanee and Yu-Wai-Man, Patrick (2022) Capturing the experiences of patients with inherited optic neuropathies: a systematic review of patient-reported outcome measures (PROMs) and qualitative studies. Graefe's Archive for Clinical and Experimental Ophthalmology. ISSN 0721-832X (Print), 1435-702X (Online) (doi:10.1007/s00417-021-05534-0)

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Abstract

Purpose: To identify and comprehensively evaluate studies capturing the experience of individuals affected by an inherited optic neuropathy focusing on patient -reported outcome measures (PROMS) and qualitative studies where the health status Md qu 01 life IQoL) 01 these individuals have been explored.
Methods: Systematic review of five databases, using a search strategy combining four concepts ' I ION; (2) Q,oL and health status' PROMs; uLd (4) qualitative research. Studies assessing the impact of ION on any QDL domain using PROM or qualitative methodology were included and appraised, using criteria based on the COSMIN checklist PROM studies) and the CASP checklist (for qualitative studies}.
Results: Of 1326 unique articles identified, studies were included Five PROMS were identified: Visual Function Index (VF- 14'; Hospital Anxiety and S calc (HAIJS) a novel graphical online assessment tcol {NGOAT' for reporting e motional to vision loss; a new PROM informed by the DSM •V Criteria for Major Depressive disorder, and In interpersonal and career 'impact rating' PROSL The psychometric performance of included PROMS were poorly described. Qualitative studies found that vision loss resulted in psychosocial losses including loss of social and communication skills and loss of independence and freedom. Factors that modified the response to vision loss were also identified.
Conclusion: The current PROMS used by individuals with ION have poor content coverage. primarily measuring activity limitation and emotional well-being, and insufficient reporting of psychometric performance. There is a need to develop PROM for i ION to report their experiences of living with their condition.

Item Type:	Article
Uncontrolled Keywords:	Inherited optic neuropathies, systematic review, patient reported outcome measure
Subjects:	R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry R Medicine > RE Ophthalmology
Faculty / School / Research Centre / Research Group:	Faculty of Education, Health & Human Sciences Faculty of Education, Health & Human Sciences > Institute for Lifecourse Development Faculty of Education, Health & Human Sciences > Institute for Lifecourse Development > Centre for Vulnerable Children and Families Faculty of Education, Health & Human Sciences > School of Human Sciences (HUM)
Related URLs:	Publisher
Last Modified:	18 Jan 2022 12:32
URI:	http://gala.gre.ac.uk/id/eprint/34771

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