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Quality of life among caregivers of sickle cell disease patients: a cross sectional study

PURPOSE: To assess the quality of life (QoL) of caregivers of children with sickle cell disease (SCD) and to determine the risk factors associated with poor QoL. METHOD: A cross sectional study was conducted between 01 and 30 June 2015, in a tertiary care center in western Saudi Arabia to assess var...

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Autores principales: Madani, Badr M., Al Raddadi, Rajaa, Al Jaouni, Soad, Omer, Mohab, Al Awa, Marie-Isabelle
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6131823/
https://www.ncbi.nlm.nih.gov/pubmed/30200992
http://dx.doi.org/10.1186/s12955-018-1009-5
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author Madani, Badr M.
Al Raddadi, Rajaa
Al Jaouni, Soad
Omer, Mohab
Al Awa, Marie-Isabelle
author_facet Madani, Badr M.
Al Raddadi, Rajaa
Al Jaouni, Soad
Omer, Mohab
Al Awa, Marie-Isabelle
author_sort Madani, Badr M.
collection PubMed
description PURPOSE: To assess the quality of life (QoL) of caregivers of children with sickle cell disease (SCD) and to determine the risk factors associated with poor QoL. METHOD: A cross sectional study was conducted between 01 and 30 June 2015, in a tertiary care center in western Saudi Arabia to assess various dimensions of QoL by using TNO-AZL Questionnaire for Adult’s Health-related Quality of Life (TAAQOL). A total 164 adult caregivers (aged 16 years or more) of children with SCD, who were regularly visiting the department were enrolled (refusal rate = 61.6%). The questionnaire scores were transformed into 0–100 scale; with higher scores indicating less difficulty and better QoL Demographic, socioeconomic data and a satisfaction questionnaire regarding participants’ lifestyle were collected and analyzed as risk factors for impaired QoL, by comparing different QoL dimensions’ scores using independent t-test, Oneway ANOVA, or linear regression, as appropriate. RESULTS: Sixty-three caregivers were included; 79.4% were mothers, age range 21–71 years, 64.5% were from low social class receiving insufficient support and financial needs were unmet for considerable number of families. Analysis of QoL using TAAQOL showed that emotions (median [75th centile] = 44.44 [66.67] for negative and 61.11 [72.22] for positive emotions), sleep quality (66.67 [91.67]) and sexual life (50.00 [83.33]) were the most affected dimensions. Professional achievement (91.67 [100]), cognitive skills (83.33 [100]), and social contact (100 [100]) were relatively preserved. Negative emotions were more marked in mothers and mostly predicted by satisfaction with social relations notably with partner (B = 3.14, p = 0.016), friends (B = 2.51, p = 0.015) and relatives (B = 2.69, p = 0.016). Positive emotions were predicted by the levels of satisfaction of the caregiver with his/her health (B = 2.56, p = 0.001), job achievement (B = 4.54, p = 0.001), living conditions (B = 2.60, p = 0.034) and the condition of the diseased child (B = 2.55, p = 0.011). A strong correlation was found between sleep quality and cognitive skills. CONCLUSION: There are notable financial and emotional burdens on the caregivers of children with SCD affecting various aspects of their QoL, which are likely to be impacted by the individual levels of social and professional achievement. Physicians and health authorities should give particular attention to the QoL of caregivers and families of children with SCD, to help them cope up with the disease and overcome its related psychological and financial impacts. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12955-018-1009-5) contains supplementary material, which is available to authorized users.
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spelling pubmed-61318232018-09-13 Quality of life among caregivers of sickle cell disease patients: a cross sectional study Madani, Badr M. Al Raddadi, Rajaa Al Jaouni, Soad Omer, Mohab Al Awa, Marie-Isabelle Health Qual Life Outcomes Research PURPOSE: To assess the quality of life (QoL) of caregivers of children with sickle cell disease (SCD) and to determine the risk factors associated with poor QoL. METHOD: A cross sectional study was conducted between 01 and 30 June 2015, in a tertiary care center in western Saudi Arabia to assess various dimensions of QoL by using TNO-AZL Questionnaire for Adult’s Health-related Quality of Life (TAAQOL). A total 164 adult caregivers (aged 16 years or more) of children with SCD, who were regularly visiting the department were enrolled (refusal rate = 61.6%). The questionnaire scores were transformed into 0–100 scale; with higher scores indicating less difficulty and better QoL Demographic, socioeconomic data and a satisfaction questionnaire regarding participants’ lifestyle were collected and analyzed as risk factors for impaired QoL, by comparing different QoL dimensions’ scores using independent t-test, Oneway ANOVA, or linear regression, as appropriate. RESULTS: Sixty-three caregivers were included; 79.4% were mothers, age range 21–71 years, 64.5% were from low social class receiving insufficient support and financial needs were unmet for considerable number of families. Analysis of QoL using TAAQOL showed that emotions (median [75th centile] = 44.44 [66.67] for negative and 61.11 [72.22] for positive emotions), sleep quality (66.67 [91.67]) and sexual life (50.00 [83.33]) were the most affected dimensions. Professional achievement (91.67 [100]), cognitive skills (83.33 [100]), and social contact (100 [100]) were relatively preserved. Negative emotions were more marked in mothers and mostly predicted by satisfaction with social relations notably with partner (B = 3.14, p = 0.016), friends (B = 2.51, p = 0.015) and relatives (B = 2.69, p = 0.016). Positive emotions were predicted by the levels of satisfaction of the caregiver with his/her health (B = 2.56, p = 0.001), job achievement (B = 4.54, p = 0.001), living conditions (B = 2.60, p = 0.034) and the condition of the diseased child (B = 2.55, p = 0.011). A strong correlation was found between sleep quality and cognitive skills. CONCLUSION: There are notable financial and emotional burdens on the caregivers of children with SCD affecting various aspects of their QoL, which are likely to be impacted by the individual levels of social and professional achievement. Physicians and health authorities should give particular attention to the QoL of caregivers and families of children with SCD, to help them cope up with the disease and overcome its related psychological and financial impacts. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12955-018-1009-5) contains supplementary material, which is available to authorized users. BioMed Central 2018-09-10 /pmc/articles/PMC6131823/ /pubmed/30200992 http://dx.doi.org/10.1186/s12955-018-1009-5 Text en © The Author(s). 2018 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research
Madani, Badr M.
Al Raddadi, Rajaa
Al Jaouni, Soad
Omer, Mohab
Al Awa, Marie-Isabelle
Quality of life among caregivers of sickle cell disease patients: a cross sectional study
title Quality of life among caregivers of sickle cell disease patients: a cross sectional study
title_full Quality of life among caregivers of sickle cell disease patients: a cross sectional study
title_fullStr Quality of life among caregivers of sickle cell disease patients: a cross sectional study
title_full_unstemmed Quality of life among caregivers of sickle cell disease patients: a cross sectional study
title_short Quality of life among caregivers of sickle cell disease patients: a cross sectional study
title_sort quality of life among caregivers of sickle cell disease patients: a cross sectional study
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6131823/
https://www.ncbi.nlm.nih.gov/pubmed/30200992
http://dx.doi.org/10.1186/s12955-018-1009-5
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