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

Abstract

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.

Keywords::

• Amyotrophic lateral sclerosis
• health budget
• rehabilitation
• nurse-tutor

Acknowledgements

We thank Drs L. Bianchi, L. Barbano, E. Bertella, R. Porta, and Mrs Doriana Baratti for their consultations. The work was performed at Fondazione Salvatore Maugeri.

Declaration of Interest: This study was partly supported by the Associazione Italiana Sclerosi Laterale Amiotrofica (Grant 060765). The funding source has no involvement in the study design, collection, analysis and interpretation of data, writing the paper and decision of publication. The authors report no declaration of interest. We are also indebted to Dr Alessandro Bettini for editing the manuscript.