• Allison Ellzey, Karen J Valentine, Caroline Hagedorn, and Nancy A Murphy.
• Division of General Pediatrics, School of Medicine, University of Utah, Salt Lake City, UT, USA.
• J Pediatr Rehabil Med. 2015 Jan 1; 8 (2): 97-104.

PurposeTo 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.MethodsParticipants 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.ResultsOne 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).ConclusionOur 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.

22 keywords...

hide…