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• W2067994934 abstract "Abstract Aim: The aim of this study was to examine medical, socio‐demographic and psychosocial determinants of health‐related quality of life (HRQoL) of parents of children with metabolic diseases. Methods: A survey among parents of children with metabolic diseases (children aged 1–19 years, diagnosed >1 year before the start of the study, living at home). Parents were approached through the Emma Children's Hospital, and through a national parent and patient association. HRQoL was assessed using the TNO‐AZL Questionnaire for Adult's Health Related Quality of Life (TAAQOL), describing 12 domains of HRQoL. Predictor variables were taken from a self‐report questionnaire. Univariate and multivariate logistic regression analyses were performed to predict which parents were at risk for HRQoL impairment. Results: Mainly psychosocial determinants were predictive for parental HRQoL. Emotional support was protective for parental HRQOL while loss of friendship was a risk factor for HRQoL impairment. Medical and socio‐demographic variables did not consistently predict parental HRQoL. Conclusion: Psychosocial determinants appeared more important in predicting parental HRQoL than medical and socio‐demographic variables. Interventions should be focused on supporting parents combining the care for their children with a social life. Further research on this subject is necessary. In the meantime, involved medical specialists should pay structural attention to parental functioning." @default.
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• W2067994934 date "2009-06-03" @default.
• W2067994934 modified "2023-10-17" @default.
• W2067994934 title "Predicting health-related quality of life of parents of children with inherited metabolic diseases" @default.
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• W2067994934 doi "https://doi.org/10.1111/j.1651-2227.2009.01269.x" @default.
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