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Quality of Life and Parental Functioning in Pediatric Pulmonary Hypertension

Mary P. Mullen


J. Andrus

M. H. Labella

P. Forbes

J. E. McSweeney

Thomas Kulik

D. R. de Maso

S. Rao

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Conference: 2012 International PHA Conference and Scientific Sessions

Release Date: 06.22.2012

Presentation Type: Abstracts

Mullen MP1,4, Andrus J1,5, Labella MH2, Forbes P3, Rao S2, McSweeney JE1, Kulik TJ1,4, DeMaso, DR1,2,4,5

Departments of Cardiology1, Psychiatry2, and Clinical Research Program3, Children’s Hospital, Boston, MA, Departments of Pediatrics4 and Psychiatry5, Harvard Medical School, Boston, MA, USA

BACKGROUNDThis study examined the impact of pulmonary hypertension (PH) on the quality of life (QoL) of affected children and the relationships between PH disease severity, parental adjustment variables, family relational functioning, and patient QoL. Methods: Subjects were 47 eligible parents of children with PH aged 2-18 years who were evaluated at Children’s Hospital Boston. Measures of patient QoL, parental stress, parental coping, parental adjustment, and family relational functioning were administered to the caregivers; while clinicians determined illness severity and family relational functioning.

RESULTSThe children with PH scored significantly lower than healthy norms on parent-reported total, psychosocial, and physical QoL scores (p < .0001). Their parents reported encountering stressful events more frequently than parents of children with cancer (p < .0001). Thirty-four percent of parents met criteria for presumed psychiatric diagnosis, and PH parents reported using psychological coping strategies significantly more often than a normative sample. A summary parental stress measure correlated inversely with QoL, an effect that held true even after controlling for disease severity (p = .03).

CONCLUSIONSPH takes a major toll on children and their families. Decreased QoL among youngsters with PH was significantly associated with high levels of parental stress, over and above the effect of illness severity. These findings suggest that interventions to better support the caretakers of affected children should accompany medical treatment advances so as to improve the QoL for patients facing pediatric PH.