title: Parent perceptions of quality of life and healthcare satisfaction for children with medical complexity.
abstract: OBJECTIVE
  To describe parent perceptions of their child's quality of life (QOL) and their satisfaction with health care for a group of children with medical complexity (CMC), and to determine whether parent perceptions of child well-being are associated with QOL and health care satisfaction.
  
  
  METHODS
  Participants were parents or legal guardians of children enrolled in a novel program of intensive outpatient care for CMC. Participants completed 7-item questionnaires to ascertain their perceptions of their child's well-being, QOL and health care satisfaction.
  
  
  RESULTS
  One hundred and ninety-one participants completed questionnaires (response rate 100%). 85% rated their child's QOL as excellent, very good, or good. 87% reported satisfaction with their child's health care. Fair or poor mental health was associated with fair or poor QOL (OR 1.09, p= 0.0002). More pain was associated with lower QOL (OR 1.07, p= 0.0022). Fewer days of play or school attendance were associated with lower satisfaction with health care (OR 1.09, p= 0.0003).
  
  
  CONCLUSIONS
  Our study suggests that more pain and worse mental health are associated with parental perceptions of the quality of life for their CMC. Clinicians who care for these children and their families should carefully and repeatedly assess for these important symptoms.
authors.affiliation: Division of General Pediatrics, School of Medicine, University of Utah, Salt Lake City, UT, USA.
authors.forename: Allison
authors.initials: A
authors.lastname: Ellzey
authors.affiliation: Pediatric Specialty Clinical Program, Intermountain Healthcare, Salt Lake City, UT, USA.|Institute for Healthcare Delivery Research, Intermountain Healthcare, Salt Lake City, UT, USA.
authors.forename: Karen J
authors.initials: KJ
authors.lastname: Valentine
authors.affiliation: Division of General Pediatrics, School of Medicine, University of Utah, Salt Lake City, UT, USA.
authors.forename: Caroline
authors.initials: C
authors.lastname: Hagedorn
authors.affiliation: Division of General Pediatrics, School of Medicine, University of Utah, Salt Lake City, UT, USA.
authors.forename: Nancy A
authors.initials: NA
authors.lastname: Murphy
mesh_terms: D000553:Ambulatory Care; D002648:Child; D002669:Child Welfare; D002675:Child, Preschool; D002908:Chronic Disease / Q000534:rehabilitation*; D003191:Comprehensive Health Care; D019988:Children with Disabilities / Q000534:rehabilitation*; D005260:Female; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D017060:Patient Satisfaction / Q000706:statistics & numerical data*; D010465:Perception; D011788:Quality of Life; D011795:Surveys and Questionnaires
keywords: Children with medical complexity; chronic pain; healthcare satisfaction; mental health; quality of life