title: Quality of life and parental adjustment in pediatric pulmonary hypertension.
abstract: BACKGROUND
  This study examines the impact of pulmonary hypertension (PH) on the quality of life (QoL) of affected youth, as well as the relationships among PH disease severity, parental adjustment variables, and family relational functioning.
  
  
  METHODS
  Subjects were 47 eligible parents of children with PH aged 2 to 18 years who were evaluated at Boston Children's Hospital. Measures of patient QoL and of parental stress, coping, and adjustment were administered to the caregivers. Clinicians rated illness severity and family relational functioning.
  
  
  RESULTS
  Youth with PH scored significantly lower than healthy norms on a measure of parent-reported QoL (total, psychosocial, and physical QoL, each P &lt; .0001). The parents reported encountering stressful events more frequently than published norms of parents of children with cancer (P &lt; .0001). Thirty-four percent of parents of children with PH met criteria for presumed psychiatric diagnosis, and they reported using psychologic coping strategies significantly more often than a normative sample. A summary parental stress measure correlated inversely with child QoL, an effect that held true even after controlling for disease severity (P = .03).
  
  
  CONCLUSIONS
  PH takes a major toll on children and their families. Decreased QoL among youth 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 and adolescents should accompany medical treatment advances so as to improve QoL for patients facing pediatric PH.
authors.affiliation: Department of Cardiology, Boston Children's Hospital; Department of Pediatrics, Harvard Medical School, Boston, MA. Electronic address: mary.mullen@cardio.chboston.org.
authors.forename: Mary P
authors.initials: MP
authors.lastname: Mullen
authors.affiliation: Department of Psychiatry, Boston Children's Hospital; Department of Psychiatry, Harvard Medical School, Boston, MA.
authors.forename: Jason
authors.initials: J
authors.lastname: Andrus
authors.affiliation: Department of Psychiatry, Boston Children's Hospital.
authors.forename: Madelyn H
authors.initials: MH
authors.lastname: Labella
authors.affiliation: Department of Cardiology, Boston Children's Hospital; Clinical Research Program, Boston Children's Hospital.
authors.forename: Peter W
authors.initials: PW
authors.lastname: Forbes
authors.affiliation: Department of Psychiatry, Boston Children's Hospital.
authors.forename: Sneha
authors.initials: S
authors.lastname: Rao
authors.affiliation: Department of Cardiology, Boston Children's Hospital.
authors.forename: Julia E
authors.initials: JE
authors.lastname: McSweeney
authors.affiliation: Department of Cardiology, Boston Children's Hospital; Department of Pediatrics, Harvard Medical School, Boston, MA.
authors.forename: Thomas J
authors.initials: TJ
authors.lastname: Kulik
authors.affiliation: Department of Cardiology, Boston Children's Hospital; Department of Psychiatry, Boston Children's Hospital; Department of Pediatrics, Harvard Medical School, Boston, MA; Department of Psychiatry, Harvard Medical School, Boston, MA.
authors.forename: David R
authors.initials: DR
authors.lastname: DeMaso
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D005195:Family Relations; D005260:Female; D006282:Health Personnel; D006801:Humans; D006976:Hypertension, Pulmonary / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D010865:Pilot Projects; D011446:Prospective Studies; D011584:Psychology; D011788:Quality of Life / Q000523:psychology*; D012189:Retrospective Studies; D012720:Severity of Illness Index; D013315:Stress, Psychological / Q000523:psychology