A pilot trial of telemedicine-assisted, integrated care for patients with advanced amyotrophic lateral sclerosis and their caregivers.
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.
Vitacca
Michele
M
Pneumologia Riabilitativa, Fondazione Salvatore Maugeri, IRCCS, Lumezzane, Brescia, Italy. michele.vitacca@fsm.it
Comini
Laura
L
Tentorio
Marta
M
Assoni
Giuliano
G
Trainini
Debora
D
Fiorenza
Domenico
D
Morini
Roberta
R
Bruletti
Gisella
G
Scalvini
Simonetta
S
D000203:Activities of Daily Living; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000523:psychology / Q000628:therapy*; D017028:Caregivers / Q000523:psychology; D005260:Female; D006699:Home Care Services / Q000458:organization & administration*; D006801:Humans; D007558:Italy; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction; D010865:Pilot Projects; D011788:Quality of Life; D019114:Remote Consultation / Q000379:methods / Q000458:organization & administration*; D011795:Surveys and Questionnaires; D017216:Telemedicine