儿童的医疗复杂性(CMC)代表了一个小,但成长,所有儿童的比例。不管他们的潜在诊断如何,根据定义,所有CMC都有相似的功能限制和高医疗保健需求.有人建议,改善CMC的医疗保健服务方面可以改善儿童及其家庭的健康和生活质量,并减少与医疗保健相关的支出。因此,许多医院已经建立了专门的综合护理计划,以满足CMC的需求;然而,目前尚不清楚这些方案是否有效。
我们的主要目标是评估旨在改善CMC的护理协调和其他方面的综合护理计划的有效性,并评估此类计划的有效性是否根据计划的设置和结构而有所不同。我们旨在评估它们在儿童和父母健康方面的有效性,功能,和生活质量,护理质量,医疗保健遭遇的数量,未满足的医疗保健需求,以及与医疗保健相关的总费用。
我们搜索了中央,MEDLINE,Embase,2023年5月和CINAHL。我们还搜索了参考列表,审判登记处,灰色文学。
随机和非随机试验,控制前后研究,和中断的时间序列研究被包括在内。纳入了将全面护理方案的入学人数与未照常接受此类方案/治疗人数进行比较的研究。参与者是符合CMC定义标准的儿童,即:患有(i)慢性疾病,(二)功能限制,(iii)增加健康和其他服务需求,(四)医疗费用增加。包括以下类型结果的研究包括:健康;护理质量;利用,覆盖面和获取;资源使用和成本;公平;和不利结果。
两位综述作者独立提取数据,评估了每项纳入研究的偏倚风险,并根据等级标准评估证据的确定性。在可能的情况下,数据以森林地块表示并汇总。我们无法对比较和结果进行荟萃分析,所以我们使用了结构化的综合方法。
我们纳入了四项研究,共有912项CMC作为参与者。所有纳入的研究都是在美国或加拿大的医院进行的随机对照试验。参与者在纳入的研究中有所不同;然而,所有4项研究均包括患有复杂和慢性疾病和高医疗保健需求的儿童.虽然在所有四项研究中干预的主要目的是相似的,干预措施的组成部分有所不同:在四项研究中,干预涉及护理协调的一些因素;在其中两项研究中,它涉及到接受多学科小组护理的儿童,在一项研究中,干预主要集中在获得高级执业护士护理协调员,另一项研究涉及与家庭合作的执业护士-儿科医生双联。四项研究中的偏见风险因领域而异,主要与参与者缺乏盲目性有关的问题,人员,和结果评估员,分配隐藏不足,和不完整的结果数据。与常规护理相比,CMC的全面护理对儿童健康几乎没有影响,功能,和12个月或24个月时的生活质量(3项研究包含404名参与者),我们评估了该类结局(儿童健康相关生活质量和功能状态)的证据,认为其确定性较低.对于CMC,全面的护理可能对父母的健康影响很小或没有影响,功能,和12个月时与常规治疗相比的生活质量(一项研究有117名参与者),我们评估了这一结局的证据具有中等确定性。与常规护理相比,CMC的综合护理可能会稍微提高儿童和家庭的满意度,和感知,12个月时的护理和服务提供(三项研究,453名参与者);然而,我们将这些结局的证据评估为低确定性.对于CMC,与12个月时的常规护理(三项研究,668名参与者)相比,全面护理可能对医疗保健遇到的次数(急诊科就诊)和住院天数(住院)几乎没有影响。我们对这些结果的证据进行了评估,认为它们具有中等的确定性。纳入的研究中有三项(668名参与者)报告了成本结果,结果相互矛盾。一项研究报告说,与对照组相比,干预组12个月时的医疗费用显着降低,一个报告组间没有差异,另一项研究报告,与对照组相比,干预组的总医疗费用增加更大。总的来说,全面护理可能对CMC的整体医疗保健成本影响很小或没有影响;然而,用于衡量医疗总费用的方法因研究而异,与这一结局相关的证据的确定性较低.没有研究评估家庭的成本。
由于可纳入的已发表研究的数量和质量有限,因此应谨慎对待本综述的发现。总的来说,CMC综合护理有效性的证据的确定性在不同结局中从低到中等不等,目前没有足够的证据可以得出有力的结论.需要更多高质量的随机试验,目标人群和干预成分一致。报告结果的方法,和随访期,以及全面成本分析,同时考虑到家庭成本和医疗保健系统成本。
Children with medical complexity (CMC) represent a small, but growing, proportion of all children. Regardless of their underlying diagnosis, by definition, all CMC have similar functional limitations and high healthcare needs. It has been suggested that improving aspects of healthcare delivery for CMC improves health- and quality of life-related outcomes for children and their families and reduces healthcare-related expenditure. As a result, dedicated comprehensive care programmes have been established at many hospitals to meet the needs of CMC; however, it is unclear if such programmes are effective.
Our main objective was to assess the effectiveness of comprehensive care programmes that aim to improve care coordination and other aspects of health care for CMC and to assess whether the effectiveness of such programmes differs according to the programme setting and structure. We aimed to assess their effectiveness in relation to child and parent health, functioning, and quality of life, quality of care, number of healthcare encounters, unmet healthcare needs, and total healthcare-related costs.
We searched CENTRAL, MEDLINE, Embase, and CINAHL in May 2023. We also searched reference lists, trial registries, and the grey literature.
Randomised and non-randomised trials, controlled before-after studies, and interrupted time series studies were included. Studies that compared enrolment in a comprehensive care programme with non-enrolment in such a programme/treatment as usual were included. Participants were children that met the criteria for the definition of CMC, which is: having (i) a chronic condition, (ii) functional limitations, (iii) increased health and other service needs, and (iv) increased healthcare costs. Studies that included the following types of outcomes were included: health; quality of care; utilisation, coverage and access; resource use and costs; equity; and adverse outcomes.
Two review authors independently extracted data, assessed the risk of bias in each included study, and evaluated the certainty of evidence according to GRADE criteria. Where possible, data were represented in forest plots and pooled. We were unable to undertake a meta-analysis for comparisons and outcomes, so we used a structured synthesis approach.
We included four studies with a total of 912 CMC as participants. All included studies were randomised controlled trials conducted in hospitals in the USA or Canada. Participants varied across the included studies; however, all four studies included children with complex and chronic illness and high healthcare needs. While the primary aim of the intervention was similar across all four studies, the components of the interventions differed: in the four studies, the intervention involved some element of care coordination; in two of the studies, it involved the child receiving care from a multidisciplinary team, while in one study, the intervention was primarily centred on access to an advanced practice nurse care coordinator and another study involved nurse a practitioner-paediatrician dyad partnering with families. The risk of bias in the four studies varied across domains, with issues primarily relating to the lack of blinding of participants, personnel, and outcome assessors, inadequate allocation concealment, and incomplete outcome data. Comprehensive care for CMC compared to usual care may make little to no difference to child health, functioning, and quality of life at 12 or 24 months (three studies with 404 participants) and we assessed the evidence for the outcomes in this category (child health-related quality of life and functional status) as being of low certainty. For CMC, comprehensive care probably makes little or no difference to parent health, functioning, and quality of life compared to usual care at 12 months (one study with 117 participants) and we assessed the evidence for this outcome as being of moderate certainty. Comprehensive care for CMC compared to usual care may slightly improve child and family satisfaction with, and perceptions of, care and service delivery at 12 months (three studies with 453 participants); however, we assessed the evidence for these outcomes as being of low certainty. For CMC, comprehensive care probably makes little or no difference to the number of healthcare encounters (emergency department visits) and the number of hospitalised days (hospital admissions) compared to usual care at 12 months (three studies with 668 participants), and we assessed the evidence for these outcomes as being of moderate certainty. Three of the included studies (668 participants) reported cost outcomes and had conflicting results, with one study reporting significantly lower healthcare costs at 12 months in the intervention group compared to the control group, one reporting no differences between groups, and the other study reporting a greater increase in total healthcare costs in the intervention group compared to the control group. Overall, comprehensive care may make little or no difference to overall healthcare costs in CMC; however, the methods used to measure total healthcare costs varied across studies and the certainty of the evidence relating to this outcome is low. No studies assessed the costs to the family.
The findings of this review should be treated with caution due to the limited amount and quality of the published research that was available to be included. Overall, the certainty of the evidence for the effectiveness of comprehensive care for CMC ranged from low to moderate across outcomes and there is currently insufficient evidence on which to draw strong conclusions. There is a need for more high-quality randomised trials with consistency of the target population and intervention components, methods of reporting outcomes, and follow-up periods, as well as full cost analyses, taking into account both costs to the family and costs to the healthcare system.