Cohen E, Friedman J N, Mahant S, Adams S, Jovcevska V, Rosenbaum P
Department of Paediatrics, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada.
Child Care Health Dev. 2010 Jul;36(4):574-82. doi: 10.1111/j.1365-2214.2009.01069.x. Epub 2010 Mar 9.
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.
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.
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.
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.
儿童医院中需要医疗护理的病情复杂且脆弱的儿童（MCFC）数量不断增加，因此需要进行最佳的护理协调。本研究的目的是描述一家三级医院中由执业护士/儿科医生管理的综合护理诊所对医疗保健利用情况、家长和初级保健提供者（PCP）对护理的看法以及家长生活质量的影响。
在这项混合方法单中心评估前或评估后的研究中，医院团队招募了MCFC及其家长进行门诊随访，以补充PCP提供的护理。家长在出院后48小时内参加半结构化访谈；在6个月和12个月时收集进一步的数据。将医疗保健利用情况与入组前的相同时间段进行比较。使用SF-36评估家长的健康状况；使用拉森患者满意度问卷和护理过程量表评估家长对护理的看法；PCP在12个月时完成一份问卷。收集家长和PCP的意见。与基线数据进行比较。
26名儿童及其家长护理人员参加了综合护理诊所。儿童住院天数中位数从43天降至15天，门诊就诊次数从2次增加到8次。与心理健康相关的三个领域的SF-36平均标准化得分有所提高。共有24名PCP回复了问卷（回复率为92%）；大多数人认为该诊所对MCFC及其家庭有帮助。家长报告说护理的连续性、以家庭为中心的护理、护理的全面性和彻底性有所改善，但在获得服务和与团队沟通不畅方面仍感到沮丧。
一个专注于整合针对MCFC的社区和医院服务的协作式医疗之家，对于未来的对照评估研究来说是一个有前景的服务提供模式。
