Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, UT, United States.
John A Paulson School of Engineering and Applied Sciences, Harvard University, Allston, MA, United States.
J Med Internet Res. 2022 Aug 23;24(8):e30902. doi: 10.2196/30902.
Care coordination is challenging but crucial for children with medical complexity (CMC). Technology-based solutions are increasingly prevalent but little is known about how to successfully deploy them in the care of CMC.
The aim of this study was to assess the feasibility and acceptability of GoalKeeper (GK), an internet-based system for eliciting and monitoring family-centered goals for CMC, and to identify barriers and facilitators to implementation.
We used the Consolidated Framework for Implementation Research (CFIR) to explore the barriers and facilitators to the implementation of GK as part of a clinical trial of GK in ambulatory clinics at a children's hospital (NCT03620071). The study was conducted in 3 phases: preimplementation, implementation (trial), and postimplementation. For the trial, we recruited providers at participating clinics and English-speaking parents of CMC<12 years of age with home internet access. All participants used GK during an initial clinic visit and for 3 months after. We conducted preimplementation focus groups and postimplementation semistructured exit interviews using the CFIR interview guide. Participant exit surveys assessed GK feasibility and acceptability on a 5-point Likert scale. For each interview, 3 independent coders used content analysis and serial coding reviews based on the CFIR qualitative analytic plan and assigned quantitative ratings to each CFIR construct (-2 strong barrier to +2 strong facilitator).
Preimplementation focus groups included 2 parents (1 male participant and 1 female participant) and 3 providers (1 in complex care, 1 in clinical informatics, and 1 in neurology). From focus groups, we developed 3 implementation strategies: education (parents: 5-minute demo; providers: 30-minute tutorial and 5-minute video on use in a clinic visit; both: instructional manual), tech support (in-person, virtual), and automated email reminders for parents. For implementation (April 1, 2019, to December 21, 2020), we enrolled 11 providers (7 female participants, 5 in complex care) and 35 parents (mean age 38.3, SD 7.8 years; n=28, 80% female; n=17, 49% Caucasian; n=16, 46% Hispanic; and n=30, 86% at least some college). One parent-provider pair did not use GK in the clinic visit, and few used GK after the visit. In 18 parent and 9 provider exit interviews, the key facilitators were shared goal setting, GK's internet accessibility and email reminders (parents), and GK's ability to set long-term goals and use at the end of visits (providers). A key barrier was GK's lack of integration into the electronic health record or patient portal. Most parents (13/19) and providers (6/9) would recommend GK to their peers.
Family-centered technologies like GK are feasible and acceptable for the care of CMC, but sustained use depends on integration into electronic health records.
ClinicalTrials.gov NCT03620071; https://clinicaltrials.gov/ct2/show/NCT03620071.
对于患有复杂疾病的儿童(CMC)来说,协调护理具有挑战性但至关重要。基于技术的解决方案越来越普遍,但对于如何成功将其应用于 CMC 的护理,人们知之甚少。
本研究旨在评估 GoalKeeper(GK)的可行性和可接受性,GoalKeeper 是一种用于引出和监测以家庭为中心的 CMC 目标的基于互联网的系统,并确定实施的障碍和促进因素。
我们使用整合实施研究框架(CFIR)来探索 GK 实施的障碍和促进因素,作为在儿童医院门诊进行 GK 临床试验的一部分(NCT03620071)。该研究分三个阶段进行:实施前、实施(试验)和实施后。在试验中,我们招募了参与诊所的提供者和有家庭互联网接入的 12 岁以下 CMC 英语家长。所有参与者在初次就诊期间和就诊后 3 个月内使用 GK。我们进行了实施前的焦点小组和实施后的半结构化退出访谈,使用 CFIR 访谈指南。参与者退出调查使用 5 分李克特量表评估 GK 的可行性和可接受性。对于每个访谈,3 位独立编码员使用内容分析和基于 CFIR 定性分析计划的连续编码审查,并为每个 CFIR 结构分配定量评分(-2 表示强烈障碍,+2 表示强烈促进因素)。
实施前的焦点小组包括 2 位家长(1 位男性参与者和 1 位女性参与者)和 3 位提供者(1 位在复杂护理,1 位在临床信息学,1 位在神经病学)。从焦点小组中,我们制定了 3 项实施策略:教育(家长:5 分钟演示;提供者:30 分钟教程和在诊所就诊中使用的 5 分钟视频;两者:教学手册)、技术支持(面对面、虚拟)和家长自动电子邮件提醒。在实施阶段(2019 年 4 月 1 日至 2020 年 12 月 21 日),我们招募了 11 名提供者(7 名女性参与者,5 名在复杂护理)和 35 名家长(平均年龄 38.3 岁,标准差 7.8 岁;n=28,80%为女性;n=17,49%为白种人;n=16,46%为西班牙裔;n=30,86%至少有一些大学学历)。一对家长-提供者没有在诊所就诊时使用 GK,很少有人在就诊后使用 GK。在 18 位家长和 9 位提供者的退出访谈中,主要的促进因素是共同制定目标、GK 的互联网可及性和电子邮件提醒(家长),以及 GK 设定长期目标和在就诊结束时使用的能力(提供者)。一个主要障碍是 GK 缺乏与电子健康记录或患者门户的集成。大多数家长(13/19)和提供者(6/9)会向他们的同行推荐 GK。
像 GK 这样的以家庭为中心的技术对于 CMC 的护理是可行和可接受的,但持续使用取决于与电子健康记录的集成。
ClinicalTrials.gov NCT03620071;https://clinicaltrials.gov/ct2/show/NCT03620071。