Tele-assistance in patients with amyotrophic lateral sclerosis: long term activity and costs

Purpose: To describe i) nurse’s utilisation and associated costs during 4-year tele-assistance in amyotrophic lateral sclerosis (ALS) ii) optimal time for initiating tele-assistance. Method: 73 ALS patients after hospital discharge were followed up on voice by phone calls conducted by a nurse through a clinical card which was tested for feasibility, efficacy and utility. Number of patients simultaneously assisted/month, calls/patient, fixed and variable costs were calculated. Results: Time between disease’s diagnosis and the beginning of tele-assistance was 720 ± 971 days. ALS patients’ percentage managed by nurses through tele-assistance increased over time by 628%. Tele-assistance integrated care (TAIC) followed up patients with a total of 5073 telephone calls. Steady state activity was reached at the 3rd year employing 5 ± 3 calls/pt/month (time/call 64 ± 44 min). Implementing the card was feasible, useful and effective by operator. Survival from diagnosis of ALS was 1224 ± 1150 days. Survival was related to tracheotomy. Conclusion: 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.

Implications for Rehabilitation

• People with ALS have a complex time course of their disease necessitating important clinical decisions.

• Individually structured holistic and rehabilitative programmes are required.

• Tele-assistance has been demonstrated to be useful to follow-up providing autonomy of care, psychosocial monitoring, interventions and a source of information.

• Tele-assistance integrated care is a feasible tool to manage up to 25 ALS patients/month/nurse.

• Tele-assistance costs about €105.00 per patient per month.

• Tele-assistance is proposed at 2/3 of time course of the disease.