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

J Telemed Telecare. 2010;16(2):83-8. doi: 10.1258/jtt.2009.090604. Epub 2010 Feb 5.

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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Activities of Daily Living
  • Aged
  • Amyotrophic Lateral Sclerosis / psychology
  • Amyotrophic Lateral Sclerosis / therapy*
  • Caregivers / psychology
  • Female
  • Home Care Services / organization & administration*
  • Humans
  • Italy
  • Male
  • Middle Aged
  • Patient Satisfaction
  • Pilot Projects
  • Quality of Life
  • Remote Consultation / methods
  • Remote Consultation / organization & administration*
  • Surveys and Questionnaires
  • Telemedicine*