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Vision-Related Quality of Life in Danish Patients with Albinism and the Impact of an Updated Optical Rehabilitation
(1) Background: Albinism is characterized by a lack of pigment in eyes, hair, and skin and developmental changes in the eye such as foveal hypoplasia. Patients require optical rehabilitation due to low vision, refractive errors, and photosensitivity. We aimed to assess vision-related quality of life...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10488237/ https://www.ncbi.nlm.nih.gov/pubmed/37685518 http://dx.doi.org/10.3390/jcm12175451 |
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author | Lisbjerg, Kristian Jordana, Joaquim Torner Brandt, Vibeke N. Kjølholm, Christine Kessel, Line |
author_facet | Lisbjerg, Kristian Jordana, Joaquim Torner Brandt, Vibeke N. Kjølholm, Christine Kessel, Line |
author_sort | Lisbjerg, Kristian |
collection | PubMed |
description | (1) Background: Albinism is characterized by a lack of pigment in eyes, hair, and skin and developmental changes in the eye such as foveal hypoplasia. Patients require optical rehabilitation due to low vision, refractive errors, and photosensitivity. We aimed to assess vision-related quality of life in patients with albinism and to evaluate how this was affected by optical rehabilitation. (2) Methods: Patients with ocular or oculocutaneous albinism were invited for the study. Free-of-charge optical rehabilitation was provided as needed, including filters, glasses for near or distance, contact lenses, magnifiers or binoculars. Vision-related quality of life was assessed prior to and after optical rehabilitation using the visual function questionnaire (VFQ39) and the effect of optical rehabilitation was evaluated after accounting for age, gender, and visual acuity. (3) Results: Seventy-eight patients filled out the VFQ39 at the initial visit. Fifty patients (64.1%) returned the questionnaire 3–6 months after optical rehabilitation. The mean age of included patients was 35.9 years (standard deviation 16.6), and their best corrected distance visual acuity was 56 ETDRS letters (range 3–81). The VFQ39 composite score improved significantly from a median of 62.5 (range 14.2–77.0) to 76.5 (20.6–99.6). Significant improvements were seen for ocular pain, social functioning, mental health, role difficulties, and dependency, whereas self-assessed distance or near visual functions did not change. (4) Conclusions: Optical rehabilitation improved the self-reported vision-related quality of life in Danish patients with albinism on a number of parameters related to leading an independent and worry-free life, whereas visual improvement for distance and near tasks was likely limited by the nature of the disease and by the fact that most patients already had access to some optical aids prior to the study. |
format | Online Article Text |
id | pubmed-10488237 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
spelling | pubmed-104882372023-09-09 Vision-Related Quality of Life in Danish Patients with Albinism and the Impact of an Updated Optical Rehabilitation Lisbjerg, Kristian Jordana, Joaquim Torner Brandt, Vibeke N. Kjølholm, Christine Kessel, Line J Clin Med Article (1) Background: Albinism is characterized by a lack of pigment in eyes, hair, and skin and developmental changes in the eye such as foveal hypoplasia. Patients require optical rehabilitation due to low vision, refractive errors, and photosensitivity. We aimed to assess vision-related quality of life in patients with albinism and to evaluate how this was affected by optical rehabilitation. (2) Methods: Patients with ocular or oculocutaneous albinism were invited for the study. Free-of-charge optical rehabilitation was provided as needed, including filters, glasses for near or distance, contact lenses, magnifiers or binoculars. Vision-related quality of life was assessed prior to and after optical rehabilitation using the visual function questionnaire (VFQ39) and the effect of optical rehabilitation was evaluated after accounting for age, gender, and visual acuity. (3) Results: Seventy-eight patients filled out the VFQ39 at the initial visit. Fifty patients (64.1%) returned the questionnaire 3–6 months after optical rehabilitation. The mean age of included patients was 35.9 years (standard deviation 16.6), and their best corrected distance visual acuity was 56 ETDRS letters (range 3–81). The VFQ39 composite score improved significantly from a median of 62.5 (range 14.2–77.0) to 76.5 (20.6–99.6). Significant improvements were seen for ocular pain, social functioning, mental health, role difficulties, and dependency, whereas self-assessed distance or near visual functions did not change. (4) Conclusions: Optical rehabilitation improved the self-reported vision-related quality of life in Danish patients with albinism on a number of parameters related to leading an independent and worry-free life, whereas visual improvement for distance and near tasks was likely limited by the nature of the disease and by the fact that most patients already had access to some optical aids prior to the study. MDPI 2023-08-22 /pmc/articles/PMC10488237/ /pubmed/37685518 http://dx.doi.org/10.3390/jcm12175451 Text en © 2023 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/). |
spellingShingle | Article Lisbjerg, Kristian Jordana, Joaquim Torner Brandt, Vibeke N. Kjølholm, Christine Kessel, Line Vision-Related Quality of Life in Danish Patients with Albinism and the Impact of an Updated Optical Rehabilitation |
title | Vision-Related Quality of Life in Danish Patients with Albinism and the Impact of an Updated Optical Rehabilitation |
title_full | Vision-Related Quality of Life in Danish Patients with Albinism and the Impact of an Updated Optical Rehabilitation |
title_fullStr | Vision-Related Quality of Life in Danish Patients with Albinism and the Impact of an Updated Optical Rehabilitation |
title_full_unstemmed | Vision-Related Quality of Life in Danish Patients with Albinism and the Impact of an Updated Optical Rehabilitation |
title_short | Vision-Related Quality of Life in Danish Patients with Albinism and the Impact of an Updated Optical Rehabilitation |
title_sort | vision-related quality of life in danish patients with albinism and the impact of an updated optical rehabilitation |
topic | Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10488237/ https://www.ncbi.nlm.nih.gov/pubmed/37685518 http://dx.doi.org/10.3390/jcm12175451 |
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