Development and Evaluation of the Telehealth in Motor Neuron Disease System: The TIME Study Protocol.

IF 1.4 Q3 HEALTH CARE SCIENCES & SERVICES JMIR Research Protocols Pub Date : 2024-10-08 DOI:10.2196/57685
Liam Knox, Elizabeth Coates, Alys Griffiths, Yasmin Ali, Esther Hobson, Christopher McDermott
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Abstract

Background: For more responsive care provision for motor neuron disease and caregivers, a digital system called Telehealth in MND-Care (TiM-C) was created. TiM-C sends regular symptom questionnaires to users; their responses are sent to health care professionals (HCPs). To enable people with motor neuron disease to participate in research studies more easily, a parallel platform was developed from TiM-C, called Telehealth in MND-Research (TiM-R). TiM-R can advertise studies, collect data, and make them available to MND researchers.

Objective: This study has 4 work packages (WPs) to facilitate service approval, codevelop the TiM systems, and evaluate the service. Each WP aims to understand (1) what helps and hinders the approval of the TiM-C system as a National Health Service; (2) what aspects of MND care and research are currently unmet and can be addressed through the TiM-C and TiM-R systems; (3) how TiM-C influences MND care, from the perspective of people with motor neuron disease, their caregivers, and HCPs; and (4) the costs and benefits associated with TiM-C.

Methods: WP1 will use semistructured interviews with 10-15 people involved in the approval of TiM-C to understand the barriers and facilitators to governance processes. WP2 will use individual and group interviews with 25-35 users (people with motor neuron disease, caregivers, HCPs, MND researchers, and industry) of TiM-C and TiM-R to understand the current unmet needs of these user groups and how TiM services can be developed to meet these needs. WP3 will use a process evaluation involving 5 elements; local context, engagement, user experiences, service impact, and mechanisms of action. A range of methods, including audits, analysis of routine data, questionnaires, interviews, and observations will be used with people with motor neuron disease, caregivers, and HCPs, both those using the system and those who declined the service when invited. WP4 will use data collected through the process evaluation and known costs to conduct a cost-consequence and budget impact analysis to explore the cost-benefit of the TiM-C service. Most data collected will be qualitative, with thematic and framework analysis used to develop themes from transcripts and observations. Descriptive statistics or t tests and chi-square tests will be used to describe and analyze quantitative data.

Results: This study has received ethical approval and has begun recruitment in 1 site. Further, 13 specialist MND centers will adopt TiM-C and the TIME study, beginning in July 2024. The study will conclude in November 2026 and a final report will be produced 3 months after the completion date.

Conclusions: This study will facilitate the implementation and development of TiM-C and TiM-R and fully evaluate the TiM-C service, enabling informed decision-making among health care providers regarding continued involvement and contribute to the wider literature relating to how technology-enabled care services can affect clinical care.

International registered report identifier (irrid): DERR1-10.2196/57685.

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运动神经元疾病远程保健系统的开发与评估:TIME 研究协议》。
背景:为了给运动神经元疾病患者和护理人员提供更有针对性的护理,我们创建了一个名为 "MND 护理中的远程保健"(Telehealth in MND-Care,TiM-C)的数字系统。TiM-C 会定期向用户发送症状调查问卷,并将用户的回复发送给医疗保健专业人员 (HCP)。为了让运动神经元病患者更方便地参与研究,在 TiM-C 的基础上开发了一个并行平台,名为 Telehealth in MND-Research (TiM-R)。TiM-R 可以发布研究广告、收集数据并提供给 MND 研究人员:本研究有 4 个工作包(WPs),以促进服务审批、TiM 系统的编码开发和服务评估。每个工作包旨在了解:(1)TiM-C 系统作为国家医疗服务获得批准的帮助和阻碍因素;(2)MND 护理和研究的哪些方面目前尚未得到满足,可通过 TiM-C 和 TiM-R 系统加以解决;(3)从运动神经元病患者、其护理者和 HCPs 的角度看,TiM-C 如何影响 MND 护理;以及(4)与 TiM-C 相关的成本和效益:WP1将对参与TiM-C审批的10-15人进行半结构化访谈,以了解治理过程中的障碍和促进因素。WP2将对TiM-C和TiM-R的25-35名用户(运动神经元疾病患者、护理人员、HCPs、MND研究人员和行业)进行个人和小组访谈,以了解这些用户群体当前未满足的需求,以及如何开发TiM服务以满足这些需求。WP3 将采用过程评估,包括 5 个要素:当地环境、参与、用户体验、服务影响和行动机制。将对运动神经元病患者、护理人员和保健医生(包括使用该系统的人员和应邀拒绝接受服务的人员)采用一系列方法,包括审计、常规数据分析、问卷调查、访谈和观察。WP4 将使用通过过程评估收集的数据和已知成本进行成本后果和预算影响分析,以探讨 TiM-C 服务的成本效益。收集到的大部分数据将是定性的,使用主题分析和框架分析来从记录和观察中确定主题。描述性统计或 t 检验和卡方检验将用于描述和分析定量数据:本研究已获得伦理批准,并已开始在 1 个地点进行招募。此外,从 2024 年 7 月开始,13 个专业 MND 中心将采用 TiM-C 和 TIME 研究。该研究将于 2026 年 11 月结束,并在结束日期后 3 个月编写最终报告:这项研究将促进 TiM-C 和 TiM-R 的实施和发展,并对 TiM-C 服务进行全面评估,使医疗服务提供者能够在知情的情况下决定是否继续参与,并为更广泛的有关技术辅助护理服务如何影响临床护理的文献做出贡献:DERR1-10.2196/57685。
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