Department of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Centre, University Medical Centre, Utrecht, the Netherlands.
Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Centre, University Medical Centre Utrecht, and De Hoogstraat Rehabilitation, Utrecht, the Netherlands, and.
Amyotroph Lateral Scler Frontotemporal Degener. 2020 May;21(3-4):183-192. doi: 10.1080/21678421.2020.1718712. Epub 2020 Jan 31.
To evaluate the use of telehealth as part of specialized care for patients with amyotrophic lateral sclerosis (ALS) and the user experiences of patients and healthcare professionals. Fifty patients with ALS were recruited from a single specialist center and used telehealth, consisting of an ALS-app for self-monitoring and messaging, alerts for symptom-worsening, and nurse practitioner follow-up. Patients self-monitored their well-being (daily report), body weight (weekly) and functional status (monthly). The use of the telehealth service was evaluated through adoption rate, dropout rate and adherence to self-monitoring. User-experiences were collected through online surveys among 23 patients and nine healthcare professionals, and interviews with 12 patients. The adoption rate was 80%, dropout rate 4% and median follow-up was 11 months. Good adherence was seen in 49% of patients for well-being, 83% for body weight and 87% for functional assessment. For patients who discontinued using telehealth due to the end-of-life phase, median time between last measurement and death was 19 days. The majority of patients experienced using telehealth as easy, helpful, not burdensome, and reported satisfaction with flexible clinic visits and the continuity of care. Healthcare professionals reported that telehealth was of added value in ALS-care. ALS-care supplemented by home-monitoring and nurse practitioner follow-up was shown to be suitable and widely accepted by patients and healthcare professionals in our ALS clinic. Success factors were low self-monitoring burden, a user-friendly platform and the provision of personalized feedback. Further research is needed to replicate these findings in other ALS clinics.
评估远程医疗在肌萎缩侧索硬化症 (ALS) 患者的专科护理中的应用以及患者和医疗保健专业人员的用户体验。 从一家专科中心招募了 50 名 ALS 患者，使用远程医疗，包括用于自我监测和消息传递的 ALS 应用程序、症状恶化警报和执业护士随访。患者自我监测其健康状况（每日报告）、体重（每周）和功能状态（每月）。通过采用率、辍学率和自我监测依从性评估远程医疗服务的使用情况。通过对 23 名患者和 9 名医疗保健专业人员进行在线调查以及对 12 名患者进行访谈收集用户体验。 采用率为 80%，辍学率为 4%，中位随访时间为 11 个月。在健康状况方面，49%的患者有良好的依从性，83%的患者对体重有良好的依从性，87%的患者对功能评估有良好的依从性。对于因生命末期而停止使用远程医疗的患者，最后一次测量与死亡之间的中位数时间为 19 天。大多数患者认为使用远程医疗很容易、有帮助、不麻烦，并对灵活的就诊时间和护理连续性表示满意。医疗保健专业人员报告称，远程医疗在 ALS 护理中具有附加价值。 在我们的 ALS 诊所中，通过家庭监测和执业护士随访补充的 ALS 护理被证明适合且被患者和医疗保健专业人员广泛接受。成功因素是低自我监测负担、用户友好的平台和提供个性化反馈。需要进一步的研究来复制这些发现。
