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

Health Qual Life Outcomes. 2013 Mar 28:11:54. doi: 10.1186/1477-7525-11-54.


Background: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

MeSH terms

  • Adaptation, Psychological
  • Adolescent
  • Adult
  • Caregivers
  • Child
  • Cross-Sectional Studies
  • Disabled Children / psychology*
  • Family / psychology*
  • Female
  • Germany / epidemiology
  • Humans
  • Interpersonal Relations
  • Male
  • Middle Aged
  • Parents / psychology*
  • Phenylketonurias / diagnosis*
  • Quality of Life / psychology*
  • Regression Analysis
  • Self Report
  • Social Support
  • Socioeconomic Factors
  • Stress, Psychological / epidemiology
  • Surveys and Questionnaires