Quality of life and associated factors in parents of children with late diagnosed phenylketonuria. A cross sectional study in a developing country (Tunisia)
Author:
Ben Abdelaziz Rim123ORCID, Ben Chehida Amel123, Kachouri Henda3, Ben Messaoud Sana3, Ferchichi Maherzia1, Ben Ameur Zeineb1, Sassi Yosra1, Abdelmoula Mohamed Slim123, Azzouz Hatem123, Tebib Néji123
Affiliation:
1. Department of Pediatrics , La Rabta Hospital , Jabbari, 1007 , Tunis , Tunisia 2. Faculty of Medicine of Tunis , University Tunis El Manar , Djebal Lakhdhar Street , La Rabta, 1007 , Tunis , Tunisia 3. Research Laboratory LR12SPO2 , University Tunis El Manar , Tunis , Tunisia
Abstract
Abstract
Objectives
We investigated the quality of life (QOL) in parents of children with late treated phenylketonuria (PKU) and its associated factors.
Methods
We conducted a cross sectional study in the reference center of inherited metabolic disease in Tunisia. We used the Tunisian version of the 36-item short-form health survey questionnaire (SF-36). We compared variables in the groups with and without impaired QOL and the SF-36 scores between subgroups of parents and children and between our sample and the Tunisian general population based on published data. We looked for associations between SF-36 scores and quantitative variables. Linear regression and logistic binary regression were used for multivariate analysis.
Results
Sixty-five parents from 42 families participated. QOL was impaired in 61% of them. The mean SF-36 score was 55.3 ± 25.07. The physical component sub-score was higher than that reported in the Tunisian general population (63.66 ± 27.77 vs. 50.11 ± 8.53; p<0.001). The mental component sub-score was comparable to that reported in the Tunisian general population (46.99 ± 25.94 vs. 47.96 ± 9.82; p=0.830). Gender (mothers) (p=0.008), low monthly income (p = 0.027), low education (p=0.011), and autism in PKU children (p = 0.001) were associated with impaired QOL.
Conclusions
We identified at risk parents for altered quality of life among parents of PKU children. Our findings were used to develop a psychological and social support strategy for at-risk parents and to promote the implementation of newborn screening of this treatable disease in our low-income country.
Publisher
Walter de Gruyter GmbH
Subject
Endocrinology,Endocrinology, Diabetes and Metabolism,Pediatrics, Perinatology, and Child Health
Reference38 articles.
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