Psychosocial impacts of Mendelian eye conditions: A systematic literature review.

anxiety coping depression genetic diseases inherited retinal diseases mental health ophthalmology psychological adaptation quality of life vision loss

Journal

Survey of ophthalmology
ISSN: 1879-3304
Titre abrégé: Surv Ophthalmol
Pays: United States
ID NLM: 0404551

Informations de publication

Date de publication:
Historique:
received: 30 08 2019
revised: 30 01 2020
accepted: 03 02 2020
pubmed: 16 2 2020
medline: 7 7 2021
entrez: 16 2 2020
Statut: ppublish

Résumé

The diagnosis of a heritable (Mendelian) eye condition can have a significant impact on patients and their families. Although a diverse group of conditions, many Mendelian eye conditions are early-onset, untreatable, progressive, and result in significant visual disability. To increase understanding of the challenges faced by this population, we review studies describing the psychosocial impacts of Mendelian eye conditions. Reduced mental health and quality of life and increased strain on relationships are common themes. We synthesize the evidence presented in this review to propose an overall model of illness factors, cultural factors, psychosocial impacts, and quality of life. Finally, we discuss implications for patient management and future research directions.

Identifiants

pubmed: 32059951
pii: S0039-6257(20)30026-6
doi: 10.1016/j.survophthal.2020.02.002
pii:
doi:

Types de publication

Journal Article Research Support, N.I.H., Intramural Systematic Review

Langues

eng

Sous-ensembles de citation

IM

Pagination

562-580

Informations de copyright

Published by Elsevier Inc.

Auteurs

Celeste S D'Amanda (CS)

Ophthalmic Genetics & Visual Function Branch, National Eye Institute, National Institutes of Health, Bethesda, MD 20892, USA; Division of Genetics, Department of Medicine, University of Rochester Medical Center, Rochester, NY 14642, USA.

Rosalie Nolen (R)

Ophthalmic Genetics & Visual Function Branch, National Eye Institute, National Institutes of Health, Bethesda, MD 20892, USA.

Laryssa A Huryn (LA)

Ophthalmic Genetics & Visual Function Branch, National Eye Institute, National Institutes of Health, Bethesda, MD 20892, USA.

Amy Turriff (A)

Ophthalmic Genetics & Visual Function Branch, National Eye Institute, National Institutes of Health, Bethesda, MD 20892, USA. Electronic address: turriffa@mail.nih.gov.

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Classifications MeSH