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A study analyzing the health-related quality of life of retinoblastoma survivors in India

PURPOSE: Retinoblastoma (RB) is the commonest intraocular tumor in children. Despite high cure rates, data on health-related quality of life (HRQoL) of RB survivors are limited. This study aimed to analyze parent's perspective and self-report of HRQoL of RB survivors, using healthy siblings as...

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Autores principales: Dhingra, Himani, Arya, Deepanjali, Taluja, Ankit, Das, Sima, Mahajan, Amita
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Wolters Kluwer - Medknow 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8302284/
https://www.ncbi.nlm.nih.gov/pubmed/34011724
http://dx.doi.org/10.4103/ijo.IJO_2428_20
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author Dhingra, Himani
Arya, Deepanjali
Taluja, Ankit
Das, Sima
Mahajan, Amita
author_facet Dhingra, Himani
Arya, Deepanjali
Taluja, Ankit
Das, Sima
Mahajan, Amita
author_sort Dhingra, Himani
collection PubMed
description PURPOSE: Retinoblastoma (RB) is the commonest intraocular tumor in children. Despite high cure rates, data on health-related quality of life (HRQoL) of RB survivors are limited. This study aimed to analyze parent's perspective and self-report of HRQoL of RB survivors, using healthy siblings as controls. It also evaluated the impact of socio-economic status (SES), gender, disease laterality, treatment modality, duration since diagnosis, and visual outcomes, on HRQoL. METHODS: Ninety-two RB survivors were enrolled in this observational, cross-sectional questionnaire-based study conducted at a tertiary care center. QoL was analyzed in four dimensions: physical, emotional, social, and school, using both self-report (for children >6 years) and parent proxy report (for children 2–18 years) using Pediatric Quality of Life Inventory™ (PedsQL™) 4.0 Generic Core Scale. Seventy-seven healthy siblings served as controls. RESULTS: The mean age of both cohorts was 5.7 years. Thirty-six (39%) patients had bilateral RB. Of the 92 survivors, 43 (47%) had undergone enucleation. The HRQoL of RB survivors was significantly lower compared to sibling controls (P < 0.01) in all four domains, the physical domain being most affected followed by social domain. Parents reported an inferior QoL than patient's self-report. Vision <6/18 in the best eye and enucleation had a negative impact on HRQoL whilst gender, disease laterality, duration since diagnosis and SES had no impact. CONCLUSION: QoL assessment is often neglected but an important aspect of survivorship. Results of our study will help in formulating awareness of the domains affected and allow timely advocacy of initiatives for addressing each issue individually. Remedial measures aimed at optimizing QoL should be incorporated as part of their rehabilitation.
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spelling pubmed-83022842021-08-02 A study analyzing the health-related quality of life of retinoblastoma survivors in India Dhingra, Himani Arya, Deepanjali Taluja, Ankit Das, Sima Mahajan, Amita Indian J Ophthalmol Original Article PURPOSE: Retinoblastoma (RB) is the commonest intraocular tumor in children. Despite high cure rates, data on health-related quality of life (HRQoL) of RB survivors are limited. This study aimed to analyze parent's perspective and self-report of HRQoL of RB survivors, using healthy siblings as controls. It also evaluated the impact of socio-economic status (SES), gender, disease laterality, treatment modality, duration since diagnosis, and visual outcomes, on HRQoL. METHODS: Ninety-two RB survivors were enrolled in this observational, cross-sectional questionnaire-based study conducted at a tertiary care center. QoL was analyzed in four dimensions: physical, emotional, social, and school, using both self-report (for children >6 years) and parent proxy report (for children 2–18 years) using Pediatric Quality of Life Inventory™ (PedsQL™) 4.0 Generic Core Scale. Seventy-seven healthy siblings served as controls. RESULTS: The mean age of both cohorts was 5.7 years. Thirty-six (39%) patients had bilateral RB. Of the 92 survivors, 43 (47%) had undergone enucleation. The HRQoL of RB survivors was significantly lower compared to sibling controls (P < 0.01) in all four domains, the physical domain being most affected followed by social domain. Parents reported an inferior QoL than patient's self-report. Vision <6/18 in the best eye and enucleation had a negative impact on HRQoL whilst gender, disease laterality, duration since diagnosis and SES had no impact. CONCLUSION: QoL assessment is often neglected but an important aspect of survivorship. Results of our study will help in formulating awareness of the domains affected and allow timely advocacy of initiatives for addressing each issue individually. Remedial measures aimed at optimizing QoL should be incorporated as part of their rehabilitation. Wolters Kluwer - Medknow 2021-06 2021-05-21 /pmc/articles/PMC8302284/ /pubmed/34011724 http://dx.doi.org/10.4103/ijo.IJO_2428_20 Text en Copyright: © 2021 Indian Journal of Ophthalmology https://creativecommons.org/licenses/by-nc-sa/4.0/This is an open access journal, and articles are distributed under the terms of the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 License, which allows others to remix, tweak, and build upon the work non-commercially, as long as appropriate credit is given and the new creations are licensed under the identical terms.
spellingShingle Original Article
Dhingra, Himani
Arya, Deepanjali
Taluja, Ankit
Das, Sima
Mahajan, Amita
A study analyzing the health-related quality of life of retinoblastoma survivors in India
title A study analyzing the health-related quality of life of retinoblastoma survivors in India
title_full A study analyzing the health-related quality of life of retinoblastoma survivors in India
title_fullStr A study analyzing the health-related quality of life of retinoblastoma survivors in India
title_full_unstemmed A study analyzing the health-related quality of life of retinoblastoma survivors in India
title_short A study analyzing the health-related quality of life of retinoblastoma survivors in India
title_sort study analyzing the health-related quality of life of retinoblastoma survivors in india
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8302284/
https://www.ncbi.nlm.nih.gov/pubmed/34011724
http://dx.doi.org/10.4103/ijo.IJO_2428_20
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