Incorporation of telehealth into a multidisciplinary ALS Clinic: feasibility and acceptability

Abstract

Objective: The practice of telehealth in the care of patients with ALS has received little attention, but has the potential to change the multidisciplinary care model. This study was carried out to assess the feasibility and acceptability of telehealth for ALS care via real-time videoconferencing from the clinic to patients’ homes. Methods: Patients and caregivers engaged in live telehealth videoconferencing from their homes with members of a multidisciplinary ALS care team who were located in an ALS clinic, in place of their usual in-person visit to the clinic. Participating patients, their caregivers, and health care providers (HCPs) completed surveys assessing satisfaction with the visit, quality of care, and confidence with the interface. Mixed methods analysis was used for survey responses. Results: Surveys from 11 patients, 12 caregivers, and 15 HCPs were completed. All patients and caregivers, and most HCPs, agreed that the system allowed for good communication, description of concerns, and provision of care recommendations. The most common sentiment conveyed by each group was that telehealth removed the burdens of travel, resulting in lower stress and more comfortable interactions. Caregivers and HCPs expressed more concerns than patients about the ways in which telehealth fell short of in-person care. Conclusions: Telehealth was generally viewed favourably by ALS patients, caregivers, and multidisciplinary team members. Improvements in technology and in methods to provide satisfactory remote care without person-to-person contact should be explored.

Keywords:

• Multidisciplinary care
• quality of life
• caregiver burden
• amyotrophic lateral sclerosis
• telehealth

Acknowledgements

This pilot work was supported in part by the ALS Association Greater Philadelphia Chapter and private donations to the Penn State Hershey ALS Clinic.

Disclosure statement

Dr. Simmons receives research support from Cytokinetics, GlaxoSmithKline, and Biogen, and has received consulting fees from Neuralstem, all of which are involved in ALS research. The other authors report no conflicts of interest.

Supplementary material available online