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.

An on-demand consult and MI-E access program can avoid hospitalizations for patients with amyotrophic lateral sclerosis with significant cost savings.

We assessed the feasibility of telemedicine for home monitoring of 45 patients with chronic respiratory failure (CRF) discharged from hospital. The patients transmitted pulsed arterial saturation (pSat) data via a telephone modem to a receiving station where a nurse was available for a teleconsultation. A respiratory physician was also available. Scheduled and ad hoc appointments were conducted. Thirty-five patients were on home mechanical ventilation, 13 with invasive and 22 with non-invasive devices. The main diagnosis was chronic obstructive pulmonary disease (COPD). The follow-up period was 176 days (SD 69). In all, 376 calls for scheduled consultations were received and 83 ad hoc consultations were requested by the patients. The actions taken were: 55 therapy modifications, 19 hospitalizations in a respiratory department for decompensated CRF, three hospitalizations in an intensive care unit (ICU), 22 requests for further investigations, 25 contacts with the general practitioner (GP), 66 demands for respiratory consultations and 10 calls for the emergency department. The mean time recorded for the 459 calls was 16 min/patient/week. In 82% of calls, a pSat recording was received successfully. The nurse time required to train the users in the operation of the pSat instrument was high (mean time 30 min). However, the results showed that home monitoring was feasible, and useful for titration of oxygen, mechanical ventilation setting and stabilization of relapses.

TAIC is a feasible tool to manage up to 25 ALS patients/month/nurse and costs about €105.00 per patient per month. Tele-assistance is proposed at 2/3 of time course of the disease.