Predicting health-related quality of life of parents of children with inherited metabolic diseases

Janneke Hatzmann, Marlies J. Valstar, Annet M. Bosch, Frits A. Wijburg, Hugo Sa Heymans, Martha A. Grootenhuis

Onderzoeksoutput: Bijdrage aan tijdschriftArtikelpeer review

42 Citaten (Scopus)


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.

Originele taal-2Engels
Pagina's (van-tot)1205-1210
Aantal pagina's6
TijdschriftActa Paediatrica, International Journal of Paediatrics
Nummer van het tijdschrift7
StatusGepubliceerd - jul. 2009
Extern gepubliceerdJa


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