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.