Department of Physical Medicine and Rehabilitation, University of Lisbon Medical School, Santa Maria Hospital, Lisbon, Portugal.
Telemed J E Health. 2010 Oct;16(8):883-8. doi: 10.1089/tmj.2010.0042. Epub 2010 Oct 6.
Neuromuscular disorders encompass a wide category of illnesses with a significant burden on the patient, family, and society. Telehome monitoring presents an alternative for closer follow-up, by ensuring timely transmission of data and prompting medical support before deterioration occurs. We used telehome monitoring devices for amyotrophic lateral sclerosis patients with respiratory failure in a clinic. This instrument directly acts as a digital recorder of parameters received from an external instrument, such as the bi-level ventilator, and contains an internal modem for direct connection to the Internet, thereby allowing bidirectional flexibility in collecting data and parameter changes whenever needed. The use and acceptance of the system was investigated with patients and all therapists involved. The instrument was found to be user-friendly and effective by the researchers, being practical for both patients and therapists. Therefore, it can be integrated into a routine home care application based on a large respiratory rehabilitation center. The device was extensively tested, and in an ongoing randomized controlled study it is being investigated whether this management strategy is able to hasten the ventilator adaptation process and to diminish the overall utilization of health services, with concurrent economic viability. We conclude that home telemonitoring represents a positive contribution to the management of chronic patients and raised awareness of it should be considered in a near future. This portable telemonitoring device provides an opportune approach to better understand and recognize a ventilatory pattern through long-term ventilation monitoring in the home environment.
神经肌肉疾病包括一大类疾病，这些疾病给患者、家庭和社会带来了沉重的负担。远程家庭监护为更密切的随访提供了一种替代方法，通过确保及时传输数据并在病情恶化之前提示医疗支持。我们在一家诊所使用远程家庭监护设备对呼吸衰竭的肌萎缩侧索硬化症患者进行监测。该仪器直接充当从外部仪器（如双水平呼吸机）接收的参数的数字记录器，并包含内部调制解调器，可直接连接到互联网，从而允许在需要时灵活地双向收集数据和参数变化。我们对患者和所有参与的治疗师进行了系统的使用和接受情况的调查。研究人员发现该仪器易于使用且有效，对患者和治疗师都很实用。因此，它可以集成到一个基于大型呼吸康复中心的常规家庭护理应用程序中。该设备经过了广泛的测试，目前正在一项正在进行的随机对照研究中，研究这种管理策略是否能够加速呼吸机适应过程，并减少整体医疗服务的利用，同时具有经济可行性。我们得出结论，远程家庭监护是对慢性患者管理的积极贡献，应该在不久的将来考虑提高对其的认识。这种便携式远程监护设备提供了一种恰当的方法，可以通过在家庭环境中进行长期通气监测，更好地了解和识别通气模式。
