Affiliations: [a] Medical College of Wisconsin, Milwaukee, WI, USA | [b] Children's Hospital of Wisconsin, Milwaukee, WI, USA | [c] University of Wisconsin-Milwaukee, Milwaukee, WI, USA
Correspondence:
[*]
Corresponding author: Sarah A. Johaningsmeir, Special Needs Program, MS C350, PO Box 1997, Milwaukee, WI 53201-9770, USA. Tel.: +1 414 337 7175; Fax: +1 414 266 2926; E-mail:sjohanin@mcw.edu
Abstract:
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.
Keywords: Children with medical complexity, complex care, quality of life, family impact
