Impact of caring for XXXX with medical complexity and high resource use on family quality of life.

@entity1 @entity10716
PURPOSE: This study examined the impact of caring for @entity1 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 @entity10716 ) 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 @entity10716 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 @entity10716 scores. Staff care coordination time was highest for @entity1 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.
