PURPOSE: 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).
CONCLUSION: 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.
