Experience of telehealth in people with motor neurone disease using noninvasive ventilation

Evidence is emerging that telehealth provides timely and cost-effective support for individuals with motor neurone disease (MND). However, little is known about the subjective experience of using telehealth. This study was designed to examine the experiences of using telemonitoring in patients with MND on noninvasive ventilation (NIV). Semi-structured interviews were conducted with seven patients (five males; mean age = 63 yrs; median illness duration = 14 m), who used a telemonitoring device for 24 weeks. Caregivers were present at five of the interviews; they supported communications and provided their feedback. Interviews were audio recorded and transcribed verbatim. Thematic analysis was conducted to find overarching themes. Five themes were identified: Benefits of Timely Intervention, Reducing the Unnecessary, Increased Self-Awareness, Taking Initiative, and Technical Challenges. Overall, timely interventions were observed as a result of regular monitoring, contributing to both physical and psychological well-being of the participants. The patient-caregiver dyads suggested that telemonitoring could reduce costs, save time and ameliorate hassles associated with attending hospital appointments. Participants articulated that telemonitoring enabled symptom awareness and interpretation; the device also enabled the participants to raise concerns and/or requests to the healthcare professionals via the messaging system. Participants confirmed that the telemonitoring device was easy to use, despite some technical issues. Telemonitoring was positively experienced. The findings suggest this approach is empowering and effective in promoting patients’ well-being, while potentially reducing unnecessary clinical contact.Implications for RehabilitationCare for people with MND demands a flexible approach to accommodate the diversity of clinical needs and relentless physical deterioration.Telehealth allows clinicians to provide person-centred care for everyone with MND through frequent monitoring.Holistic and rehabilitative service facilitated by telehealth is generally acceptable and preferred to routine appointments among MND NIV patients.Telehealth promotes time efficient engagement with professionals that leads to symptom awareness and interpretation, while benefiting physical and psychological well-being of MND NIV patients. Care for people with MND demands a flexible approach to accommodate the diversity of clinical needs and relentless physical deterioration. Telehealth allows clinicians to provide person-centred care for everyone with MND through frequent monitoring. Holistic and rehabilitative service facilitated by telehealth is generally acceptable and preferred to routine appointments among MND NIV patients. Telehealth promotes time efficient engagement with professionals that leads to symptom awareness and interpretation, while benefiting physical and psychological well-being of MND NIV patients.

越来越多的证据表明，远程医疗（telehealth）可为运动神经元病（motor neurone disease, MND）患者提供及时且具有成本效益的支持。然而，目前学界对患者使用远程医疗的主观体验仍知之甚少。本研究旨在探讨接受无创通气（noninvasive ventilation, NIV）的运动神经元病患者使用远程监测的体验。研究纳入7名使用远程监测设备时长为24周的患者（5名男性，平均年龄63岁，中位病程14个月），并对其开展半结构化访谈。其中5次访谈有照顾者在场，协助沟通并提供自身的反馈意见。访谈内容采用音频录制并逐字转录。本研究采用主题分析法提炼核心主题，最终确定5个核心主题：及时干预的益处、减少不必要医疗行为、自我认知提升、主动参与以及技术挑战。总体而言，定期监测可实现及时干预，这对参与者的生理与心理健康均有益处。患者-照顾者二人组反馈称，远程监测可降低医疗成本、节省时间，并缓解因前往医院就诊带来的诸多不便。参与者表示，远程监测有助于其了解并解读自身症状；此外，该设备还支持患者通过消息系统向医护人员表达担忧或提出诉求。尽管存在部分技术问题，参与者仍认为该远程监测设备操作简便，整体使用体验良好。研究结果表明，远程监测可赋予患者自主能力，在提升患者健康水平的同时，还能减少不必要的临床接触。

康复治疗启示
运动神经元病患者的照护需采用灵活方案，以适配多样化的临床需求及持续进展的躯体功能衰退。远程医疗可帮助医护人员通过定期监测，为所有运动神经元病患者提供以患者为中心的照护服务。对于接受无创通气的运动神经元病患者而言，由远程医疗支持的整合式康复服务通常具有良好的接受度，且相较于常规门诊就诊更受青睐。远程医疗可提升患者与医护人员的沟通效率，帮助其了解并解读自身症状，同时改善接受无创通气的运动神经元病患者的生理与心理健康水平。运动神经元病患者的照护需采用灵活方案，以适配多样化的临床需求及持续进展的躯体功能衰退。远程医疗可帮助医护人员通过定期监测，为所有运动神经元病患者提供以患者为中心的照护服务。对于接受无创通气的运动神经元病患者而言，由远程医疗支持的整合式康复服务通常具有良好的接受度，且相较于常规门诊就诊更受青睐。远程医疗可提升患者与医护人员的沟通效率，帮助其了解并解读自身症状，同时改善接受无创通气的运动神经元病患者的生理与心理健康水平。