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


CONCLUSIONS
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.
Hatzmann
Janneke
J
Psycho Social Department, Emma Children's Hospital, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.
Valstar
Marlies J
MJ
Bosch
Annet M
AM
Wijburg
Frits A
FA
Heymans
Hugo S A
HS
Grootenhuis
Martha A
MA
D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D016009:Chi-Square Distribution; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D006304:Health Status; D006801:Humans; D007223:Infant; D016015:Logistic Models; D008661:Metabolism, Inborn Errors / Q000235:genetics; D028361:Mitochondrial Diseases / Q000235:genetics; D015999:Multivariate Analysis; D010290:Parents / Q000523:psychology*; D011594:Psychometrics; D011788:Quality of Life; D011795:Surveys and Questionnaires; D055815:Young Adult