TY - JOUR
T1 - Telehealth as part of specialized ALS care
T2 - feasibility and user experiences with "ALS home-monitoring and coaching"
AU - Helleman, Jochem
AU - Van Eenennaam, Remko
AU - Kruitwagen, Esther T
AU - Kruithof, Willeke J
AU - Slappendel, Marja J
AU - Van Den Berg, Leonard H
AU - Visser-Meily, Johanna M A
AU - Beelen, Anita
N1 - Funding Information:
This study was funded by the Netherlands ALS foundation (No. 2016-51). We would like to thank Nicole Tiemessen and Melanie Groothuis from the Department of Information Technology, University Medical Center Utrecht for their support during the development and implementation of ALS Home-monitoring and Coaching.
Publisher Copyright:
© 2020, © 2020 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
Copyright:
Copyright 2020 Elsevier B.V., All rights reserved.
PY - 2020/5
Y1 - 2020/5
N2 - Objective: To evaluate the use of telehealth as part of specialized care for patients with amyotrophic lateral sclerosis (ALS) and the user experiences of patients and healthcare professionals. Methods: Fifty patients with ALS were recruited from a single specialist center and used telehealth, consisting of an ALS-app for self-monitoring and messaging, alerts for symptom-worsening, and nurse practitioner follow-up. Patients self-monitored their well-being (daily report), body weight (weekly) and functional status (monthly). The use of the telehealth service was evaluated through adoption rate, dropout rate and adherence to self-monitoring. User-experiences were collected through online surveys among 23 patients and nine healthcare professionals, and interviews with 12 patients. Results: The adoption rate was 80%, dropout rate 4% and median follow-up was 11 months. Good adherence was seen in 49% of patients for well-being, 83% for body weight and 87% for functional assessment. For patients who discontinued using telehealth due to the end-of-life phase, median time between last measurement and death was 19 days. The majority of patients experienced using telehealth as easy, helpful, not burdensome, and reported satisfaction with flexible clinic visits and the continuity of care. Healthcare professionals reported that telehealth was of added value in ALS-care. Conclusions: ALS-care supplemented by home-monitoring and nurse practitioner follow-up was shown to be suitable and widely accepted by patients and healthcare professionals in our ALS clinic. Success factors were low self-monitoring burden, a user-friendly platform and the provision of personalized feedback. Further research is needed to replicate these findings in other ALS clinics.
AB - Objective: To evaluate the use of telehealth as part of specialized care for patients with amyotrophic lateral sclerosis (ALS) and the user experiences of patients and healthcare professionals. Methods: Fifty patients with ALS were recruited from a single specialist center and used telehealth, consisting of an ALS-app for self-monitoring and messaging, alerts for symptom-worsening, and nurse practitioner follow-up. Patients self-monitored their well-being (daily report), body weight (weekly) and functional status (monthly). The use of the telehealth service was evaluated through adoption rate, dropout rate and adherence to self-monitoring. User-experiences were collected through online surveys among 23 patients and nine healthcare professionals, and interviews with 12 patients. Results: The adoption rate was 80%, dropout rate 4% and median follow-up was 11 months. Good adherence was seen in 49% of patients for well-being, 83% for body weight and 87% for functional assessment. For patients who discontinued using telehealth due to the end-of-life phase, median time between last measurement and death was 19 days. The majority of patients experienced using telehealth as easy, helpful, not burdensome, and reported satisfaction with flexible clinic visits and the continuity of care. Healthcare professionals reported that telehealth was of added value in ALS-care. Conclusions: ALS-care supplemented by home-monitoring and nurse practitioner follow-up was shown to be suitable and widely accepted by patients and healthcare professionals in our ALS clinic. Success factors were low self-monitoring burden, a user-friendly platform and the provision of personalized feedback. Further research is needed to replicate these findings in other ALS clinics.
KW - Amyotrophic lateral sclerosis
KW - app
KW - self-monitoring
KW - telehealth
KW - user experiences
UR - http://www.scopus.com/inward/record.url?scp=85079161121&partnerID=8YFLogxK
U2 - 10.1080/21678421.2020.1718712
DO - 10.1080/21678421.2020.1718712
M3 - Article
C2 - 32003245
SN - 2167-8421
VL - 21
SP - 183
EP - 192
JO - Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration
JF - Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration
IS - 3-4
ER -