IDD 医疗保健过渡四重目标成果:范围界定审查

Ellen Fremion , Kathleen Irby , Sophia Jan , Carlie Stein Somerville , Susan Shanske , Dava Szalda , Ahmet Uluer , Parag Shah
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引用次数: 0

摘要

目的 针对患有儿童期慢性病的青少年和年轻成年人的规划、转院和融入成人医疗的结构化医疗过渡模式正变得越来越普遍。然而,对于评估医疗保健过渡(HCT)干预措施,尤其是针对智力和发育障碍(IDD)人群的干预措施,目前还缺乏共识。方法在 2021 年 8 月 6 日和 2023 年 4 月 27 日,使用 "年轻成人"、"智障"、"发育障碍"、"认知功能障碍"、"自闭症"、"脑瘫"、"脊柱裂 "和 "向成人护理过渡 "等术语对 Medline Ovid、Embase、Web of Science、PsycINFO 和 Cochrane 数据库进行了检索。搜索仅限于 2000 年至今发表的英文出版物。如果研究对象是患有 IDD(自闭症、大脑性麻痹、唐氏综合症、脊柱裂或其他 IDD 相关疾病)的年轻成年人(中位数/平均年龄为 18-26 岁),且研究结果涉及 "四重目标 "中的一个领域(人群健康、患者/家庭体验、成本/使用和医疗服务提供者/护理人员体验),则纳入观察性和实验性(定性或定量)研究。如果参与者仅有注意力缺陷/多动障碍或学习障碍,如果研究结果主要是教育或职业方面的,或者如果出版物是综述、摘要或非英语出版物,则排除这些研究。文章按照四重目标领域进行分类:包括人口健康(43 篇)、患者/护理人员医疗保健体验(23 篇)、成本/使用(24 篇)和医疗保健提供者/护理人员体验(15 篇)。结论尽管描述 IDD 群体 HCT 结果的研究有限且测量方法不一致,但本综述中确定的与 "四重目标 "结果相关的研究可进一步引导人们努力达成 HCT 结果测量方法的共识和标准化,以满足 IDD 患者、其家人和护理者/提供者的需求。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Health care transition quadruple aim outcomes for IDD: Scoping review

Purpose

Structured HCT models addressing planning, transfer, and integration into adult care for adolescents and young adults with childhood-acquired chronic conditions are becoming more prevalent. However, consensus on outcome measures to assess health care transition (HCT) interventions particularly for intellectual and developmental disabilities (IDD) population is lacking. This scoping review identified potential HCT outcome measures for young adults (aged 18–26) with IDD using the Quadruple Aim Framework.

Methods

On August 6, 2021 and April 27, 2023, Medline Ovid, Embase, Web of Science, PsycINFO, and Cochrane databases were searched using the terms “young adult,” “intellectual disability,” “developmental disability, “cognitive dysfunction,” “autism,” “cerebral palsy,” “spina bifida,” and “transition to adult care.” Searches were limited to publications in English and published from 2000 to present. Observational and experimental (qualitative or quantitative) studies were included if participants were young adults (median/mean ages 18–26) with IDD (Autism, cerebral palsy, Down syndrome, spina bifida, or other IDD-related conditions) and study outcomes addressed one of the Quadruple Aim domains (population health, patient/family experience, cost/utilization, and healthcare provider/caregiver experience). Studies were excluded if participants had attention deficit/hyperactivity disorder or learning disability only, if outcomes were primarily educational or vocational, or if publications were reviews, abstracts, or not in English.

Results

One hundred and three articles were included data extraction. Articles were categorized under the Quadruple Aim domains: Population Health (43), Patient/Caregiver Healthcare Experience included (23), Cost/Utilization (24), and Healthcare Provider/Caregiver Experience (15). Most articles were observational and utilized a variety of assessments or internally developed questions as measures.

Conclusions

While studies describing HCT outcomes for the IDD population are limited and measures are inconsistent, studies pertaining to Quadruple Aim outcomes identified in this review can further direct efforts towards consensus and standardization of HCT outcome measures to address the needs of individuals with IDD, their families, and caregivers/providers.

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