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

J. Hatzmann, M.J. Valstar, A. Bosch, F.A. Wijburg, H.S. Heymans, M.A. Grootenhuis

Research output: Contribution to JournalArticleAcademicpeer-review

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
Original languageEnglish
Pages (from-to)1205-1210
JournalActa Paediatrica
Volume98
Issue number7
DOIs
Publication statusPublished - 2009

Bibliographical note

DA - 20090729 LA - eng JT - Acta paediatrica (Oslo, Norway : 1992)

Fingerprint

Dive into the research topics of 'Predicting health-related quality of life of parents of children with inherited metabolic diseases'. Together they form a unique fingerprint.

Cite this