title: Impact of caring for children with medical complexity and high resource use on family quality of life.
abstract: OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Medical College of Wisconsin, Milwaukee, WI, USA.
authors.forename: Sarah A
authors.initials: SA
authors.lastname: Johaningsmeir
authors.affiliation: Children's Hospital of Wisconsin, Milwaukee, WI, USA.
authors.forename: Holly
authors.initials: H
authors.lastname: Colby
authors.affiliation: Children's Hospital of Wisconsin, Milwaukee, WI, USA.
authors.forename: Mary
authors.initials: M
authors.lastname: Krauthoefer
authors.affiliation: Medical College of Wisconsin, Milwaukee, WI, USA.
authors.forename: Pippa
authors.initials: P
authors.lastname: Simpson
authors.affiliation: University of Wisconsin-Milwaukee, Milwaukee, WI, USA.
authors.forename: Simone C O
authors.initials: SC
authors.lastname: Conceição
authors.affiliation: Medical College of Wisconsin, Milwaukee, WI, USA.
authors.forename: John B
authors.initials: JB
authors.lastname: Gordon
mesh_terms: D000553:Ambulatory Care / Q000191:economics / Q000706:statistics & numerical data; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D002908:Chronic Disease / Q000191:economics / Q000534:rehabilitation*; D019988:Children with Disabilities / Q000534:rehabilitation*; D005260:Female; D006760:Hospitalization / Q000191:economics / Q000706:statistics & numerical data; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D017060:Patient Satisfaction / Q000706:statistics & numerical data*; D011788:Quality of Life / Q000523:psychology; D016037:Single-Blind Method; D062606:Tertiary Care Centers / Q000191:economics / Q000706:statistics & numerical data*; D014922:Wisconsin
keywords: Children with medical complexity; complex care; family impact; quality of life