The impact of a complex care clinic in a children's hospital.

BACKGROUND The number of medically complex and fragile children (MCFC) cared for in children's hospitals is growing, necessitating the need for optimal care co-ordination. The purpose of this study was to describe the impact of a nurse practitioner/paediatrician-run complex care clinic in a tertiary care hospital on healthcare utilization, parental and primary care provider (PCP) perceptions of care and parental quality of life. METHODS MCFC and their parents were recruited for ambulatory follow-up by the hospital team to complement care provided by the PCP in this mixed methods single centre pre- or post-evaluative study. Parents participated in semi-structured interviews within 48 h of discharge; further data were collected at 6 and 12 months. Healthcare utilization was compared with equal time periods pre-enrolment. Parental health was assessed with the SF-36; parental perceptions of care were assessed using the Larsen's Client Satisfaction Questionnaire and the Measure of Processes of Care; PCPs completed a questionnaire at 12 months. Parental and PCP comments were elicited. Comparisons were made with baseline data. RESULTS Twenty-six children and their parental caregivers attended the complex care clinic. The number of days that children were admitted to hospital decreased from a median of 43 to 15 days, and outpatient visits increased from 2 to 8. Mean standardized scores on the SF-36 increased (improved) for three domains related to mental health. A total of 24 PCPs responded to the questionnaire (92% response); most found the clinic helpful for MCFC and their families. Parents reported improvements in continuity of care, family-centredness of care, comprehensiveness and thoroughness of care, but still experienced frustrations with access to services and miscommunication with the team. CONCLUSION A collaborative medical home focused on integrating community- and hospital-based services for MCFC is a promising service delivery model for future controlled evaluative studies.

[1]  Parminder Raina,et al.  The Health and Well-Being of Caregivers of Children With Cerebral Palsy , 2005, Pediatrics.

[2]  A. Tse,et al.  STRESS IN FAMILIES WITH MEDICALLY FRAGILE CHILDREN , 2002, Issues in comprehensive pediatric nursing.

[3]  G. King,et al.  Evaluating Health Service Delivery to Children With Chronic Conditions and Their Families: Development of a Refined Measure of Processes of Care (MPOC−20) , 2004 .

[4]  P. Wise.  The transformation of child health in the United States. , 2004, Health affairs.

[5]  Laurie A. Moore,et al.  Utilization and Costs for Children Who Have Special Health Care Needs and Are Enrolled in a Hospital-Based Comprehensive Primary Care Clinic , 2005, Pediatrics.

[6]  G. King,et al.  Service integration and co-ordination: a framework of approaches for the delivery of co-ordinated care to children with disabilities and their families. , 2006, Child: care, health and development.

[7]  C. Stille,et al.  Coordination of care for children with special health care needs , 2004, Current opinion in pediatrics.

[8]  M. W. Krauss,et al.  Navigating Systems of Care: Results From a National Survey of Families of Children With Special Health Care Needs , 2001 .

[9]  P. Havens,et al.  A tertiary care-primary care partnership model for medically complex and fragile children and youth with special health care needs. , 2007, Archives of pediatrics & adolescent medicine.

[10]  W. Hargreaves,et al.  Assessment of client/patient satisfaction: development of a general scale. , 1979, Evaluation and program planning.

[11]  D. Christakis,et al.  Trends in pediatric hospitalizations of children in washington state by insurance and chronic condition status, 1991-1998. , 2002, Archives of pediatrics & adolescent medicine.

[12]  R. Kirby,et al.  Does Access to a Medical Home Differ According to Child and Family Characteristics, Including Special-Health-Care-Needs Status, Among Children in Alabama? , 2007, Pediatrics.

[13]  C. Sherbourne,et al.  The MOS 36-Item Short-Form Health Survey (SF-36) , 1992 .

[14]  M. Ganz,et al.  The Pediatric Alliance for Coordinated Care: evaluation of a medical home model. , 2004, Pediatrics.

[15]  George W. Torrance,et al.  Multi-Attribute Health Status Classification Systems , 1995, PharmacoEconomics.

[16]  Chris Feudtner,et al.  Technology-dependency among patients discharged from a children's hospital: a retrospective cohort study , 2005, BMC pediatrics.

[17]  P. Newacheck,et al.  A national profile of health care utilization and expenditures for children with special health care needs. , 2005, Archives of pediatrics & adolescent medicine.

[18]  Bryan L Stone,et al.  Hospitalist care of the medically complex child. , 2005, Pediatric clinics of North America.

[19]  P. Rosenbaum,et al.  PARENTS‘ PERCEPTIONS OF CAREGIVING: DEVELOPMENT AND VALIDATION OF A MEASURE OF PROCESSES , 1996, Developmental medicine and child neurology.

[20]  Jill G Joseph,et al.  Hospital-reported medical errors in children. , 2003, Pediatrics.

[21]  B. Leonard,et al.  Parental distress: caring for medically fragile children at home. , 1993, Journal of pediatric nursing.

[22]  M. Gerardi,et al.  The potential for errors in children with special health care needs. , 2000, Academic emergency medicine : official journal of the Society for Academic Emergency Medicine.

[23]  V. Greco,et al.  Care co-ordination and key worker schemes for disabled children: results of a UK-wide survey. , 2004, Child: care, health and development.

[24]  F. Babl,et al.  Preventing or accelerating emergency care for children with complex healthcare needs , 2007, Archives of Disease in Childhood.