Integrated complex care coordination for children with medical complexity: A mixed-methods evaluation of tertiary care-community collaboration
Cohen 2006 BMC HSR Refs
BACKGROUND:Primary care medical homes may improve health outcomes for children with special healthcare needs (CSHCN), by improving care coordination. However, community-based primary care practices may be challenged to deliver comprehensive care coordination to complex subsets of CSHCN such as children with medical complexity (CMC). Linking a tertiary care center with the community may achieve cost effective and high quality care for CMC. The objective of this study was to evaluate the outcomes of community-based complex care clinics integrated with a tertiary care center.METHODS:A before- and after-intervention study design with mixed (quantitative/qualitative) methods was utilized. Clinics at two community hospitals distant from tertiary care were staffed by local community pediatricians with the tertiary care center nurse practitioner and linked with primary care providers. Eighty-one children with underlying chronic conditions, fragility, requirement for high intensity care and/or technology assistance, and involvement of multiple providers participated. Main outcome measures included health care utilization and expenditures, parent reports of parent- and child-quality of life [QOL (SF-36(R), CPCHILD(c), PedsQLTM)], and family-centered care (MPOC-20(R)). Comparisons were made in equal (up to 1 year) pre- and post-periods supplemented by qualitative perspectives of families and pediatricians.RESULTS:Total health care system costs decreased from median (IQR) $244 (981) per patient per month (PPPM) pre-enrolment to $131 (355) PPPM post-enrolment (p=.007), driven primarily by fewer inpatient days in the tertiary care center (p=.006). Parents reported decreased out of pocket expenses (p<.0001). Parental QOL did not significantly change over the course of the study. Child QOL improved between baseline and 6 months in two PedsQLTM domains [Social (p=.01); Emotional (p=.003)], and between baseline and 1 year in two CPCHILD(c) domains [Health Standardization Section (p=.04); Comfort and Emotions (p=.03)], while total CPCHILD(c) score decreased between baseline and 1 year (p=.003). Parents and providers reported the ability to receive care close to home as a key benefit.CONCLUSIONS:Complex care can be provided in community-based settings with less direct tertiary care involvement through an integrated clinic. Improvements in health care utilization and family-centeredness of care can be achieved despite minimal changes in parental perceptions of child health.
Cohen E; Lacombe-Duncan A; Spalding K; MacInnis J; Nicholas D; Narayanan U; Gordon M; Margolis I; Friedman J
Bmc Health Services Research
2012
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Journal Article
Engaging Fathers in Pediatric Palliative Care Research
Caregiver; child; child health; controlled study; father; health care personnel; interview; male; palliative therapy; pediatrics; perception; qualitative research; wellbeing
Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A secondary mixed-methods evaluation design guided examination of interview and focus group data as well as field notes from a qualitative study that examined the experiences and support needs of fathers of children with a life-limiting illness. Facilitators of paternal participation in the study consisted of: fathers' desire to gain from study participation either for themselves or others, perception of the study's importance, sense of appreciation for the study's focus on fathers and an established relationship with recruiting health care providers. Barriers to study participation included: recruiting health care providers' appraisal of fathers' lack of well-being, bereaved fathers' self-reported poor coping and the inability to locate and contact fathers, particularly after a child's death. Strategies for improving the engagement of fathers into research entailed: educating recruitment personnel, designing "father-focused" studies, communicating the value of the research to recruitment personnel and potential participants, and ensuring that child health records are accurate and include fathers' contact information.
Nicholas D; Beaune L; Belletrutti M; Blumberg J; Ing S; Rapoport A; Barrera M
Journal of Social Work in End-of-Life & Palliative Care
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/15524256.2019.1703877" target="_blank" rel="noreferrer noopener">10.1080/15524256.2019.1703877</a>