A pilot trial of telemedicine-assisted, integrated care for patients with advanced amyotrophic lateral sclerosis and their caregivers

Abstract

Patients with amyotrophic lateral sclerosis (ALS) need a care programme as the disease progresses. We used telemedicine-assisted integrated care (TAIC) in 40 patients with ALS, for a mean duration of 8.6 months (range 1-12). A nurse-tutor played the key role, supported by respiratory physicians, neurologists and psychologists. Each patient used a portable pulse oximeter during the daily telephone contacts to assess clinical/oxygen variations. Patients also completed a satisfaction questionnaire. During the study period, each patient used TAIC at least five times per month. There were 1907 scheduled telephone calls (86% of the total) and 317 unscheduled calls. Of the unscheduled calls, 84% were managed by the nurse-tutor and only 16% of them required specialist intervention. The most common item was the ALS clinical interview (58%), followed by the description of acute symptoms, cough ability and oxygenation. TAIC staff recommended 4 out of 12 emergency hospital admissions (33%) and 77% of the other hospitalizations. Patients and caregivers were extremely satisfied (79%) with the nurse assistance provided and the patients' confidence in handling their disease improved in 71% of the cases. TAIC provides a nurse-centred, home-monitoring programme that can be a useful way of following up ALS patients.

Tele-monitoring of ventilator-dependent patients: a European Respiratory Society Statement

“…There are different technologies and timings for data collection, ranging from digital videophone systems, alone [25] or coupled with other systems [26] to weekly transmission of ventilator data through modems, weekly phone interviews by nurses coupled with oximetry download through modems [34,[46][47][48], daily oximetry readings [46][47][48], customised or commercial multifunctional devices [34,35,49]. For severe COPD patients with CRF tele-spirometry may help in the monitoring of lung function and complement the information in the VDIs [34].…”

Using technology to improve access to specialist care in amyotrophic lateral sclerosis: A systematic review

“…Two papers (48,49). It is unclear whether the same patients were involved in more than one of these studies.…”

“…The Lisbon study examined patientsÕ attitudes to the service: 93% of patients rating the service as ÒgoodÓ or Òvery goodÓ but only 36% of patients considered it to be a method of improving their life (48). The reasons for this are not described, but these telehealth regimes were very intensive requiring patients to make frequent contact with the ALS team.…”

Amyotrophic lateral sclerosis and palliative care: Where we are, and the road ahead

“…The use of telemedicine may be one way to overcome this structural barrier. 104 As the illness progresses, physical symptoms of the disease intensify. Psychological distress in ALS patients and their caregivers also increases.…”