Impact of caring for children with medical complexity and high resource use on family quality of life. J Pediatr Rehabil Med 2015;8(2):75-82
Date
09/28/2015Pubmed ID
26409861DOI
10.3233/PRM-150321Scopus ID
2-s2.0-84936865239 (requires institutional sign-in at Scopus site) 16 CitationsAbstract
PURPOSE: This study examined the impact of caring for children with medical complexity (CMC) and high resource use on family quality of life (QoL).
METHODS: Families of CMC enrolled in a complex care program completed the PedsQL Family Impact module (PedsQL FIM) and Healthcare Satisfaction module (PedsQL HCS) at enrollment then 1 and 2 years after enrollment. Tertiary center resource utilization and staff care coordination time were collected for the two years.
RESULTS: PedsQL FIM scores were low at enrollment and did not improve over time. Social Functioning, Worry, and Daily Activities were the lowest domains. PedsQL HCS scores were higher at enrollment, but also failed to improve over the two years. Changes in resource use were not associated with changes in PedsQL FIM or HCS scores. Staff care coordination time was highest for patients with ≥ 10 hospital days per year.
CONCLUSION: CMC families' low QoL did not appear to be related to healthcare satisfaction or a shift from inpatient to outpatient resource use. Less staff support for families of CMC who spent more time at home may have contributed to their continued low QoL. Further study is required to identify causes of and strategies for improving the low QoL of families of CMC.
Author List
Johaningsmeir SA, Colby H, Krauthoefer M, Simpson P, Conceição SC, Gordon JBAuthor
Pippa M. Simpson PhD Adjunct Professor in the Pediatrics department at Medical College of WisconsinMESH terms used to index this publication - Major topics in bold
Ambulatory CareCaregivers
Child
Child, Preschool
Chronic Disease
Disabled Children
Female
Hospitalization
Humans
Longitudinal Studies
Male
Patient Satisfaction
Quality of Life
Single-Blind Method
Tertiary Care Centers
Wisconsin
