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Open Access Highly Accessed Research

Quality of life among parents of children with phenylketonuria (PKU)

Astrid Fidika1*, Christel Salewski2 and Lutz Goldbeck1

Author Affiliations

1 Department of Child and Adolescent Psychiatry/Psychotherapy, University Hospital Ulm, Ulm 89075, Germany

2 Department of Psychology, University of Hagen, Hagen 58097, Germany

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Health and Quality of Life Outcomes 2013, 11:54  doi:10.1186/1477-7525-11-54

Published: 28 March 2013



Parents of children with chronic conditions are known to be at risk of impairment in their quality of life (QoL). Studies considering other chronic conditions proposed diverse factors to have an impact on the parent’s QoL. So far, there has been little research on parents who have a child with phenylketonuria (PKU). This study was designed to evaluate the parental quality of life (PQoL) of parents of children and adolescents who have PKU and identify possible predictors of PQoL.


In this cross-sectional study 89 parents completed self-report measures of PQoL, family stress, social support, and parental coping. To determine the impact of these potential predictors on PQoL, regression and mediation analyses were performed.


Most parents coped well with their children’s metabolic disorder. Family stress (β = −0.42; p < 0.001) and perceived social support (β = 0.33; p = 0.001) were proven to be the most powerful predictors, accounting together for 45% of the variance of PQoL. Social support mediated the association between family stress and PQoL.


The current study indicates that parents of younger children are an especially vulnerable group. Members of health-care teams should be able to identify and empower vulnerable parents to seek and maintain social support.

Parents; Quality of life; PKU; Metabolic disorder; Social support