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  • Title: Predicting health-related quality of life of parents of children with inherited metabolic diseases.
    Author: Hatzmann J, Valstar MJ, Bosch AM, Wijburg FA, Heymans HS, Grootenhuis MA.
    Journal: Acta Paediatr; 2009 Jul; 98(7):1205-10. PubMed ID: 19397532.
    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.
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