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.