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

Tópicos

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Resumo

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.

Resumo Limpo

patient amyotroph later sclerosi al need care programm diseas progress use telemedicineassist integr care taic patient al mean durat month rang nursetutor play key role support respiratori physician neurologist psychologist patient use portabl puls oximet daili telephon contact assess clinicaloxygen variat patient also complet satisfact questionnair studi period patient use taic least five time per month schedul telephon call total unschedul call unschedul call manag nursetutor requir specialist intervent common item al clinic interview follow descript acut symptom cough abil oxygen taic staff recommend emerg hospit admiss hospit patient caregiv extrem satisfi nurs assist provid patient confid handl diseas improv case taic provid nursecentr homemonitor programm can use way follow al patient

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