Experience of telehealth in people with motor neurone disease using noninvasive ventilation

Abstract

Introduction: Evidence is emerging that telehealth provides timely and cost-effective support for individuals with motor neurone disease (MND). However, little is known about the subjective 6 experience of using telehealth. This study was designed to examine the experiences of using 7 telemonitoring in patients with MND on non-invasive ventilation (NIV). 8 Methods: Semi-structured interviews were conducted with seven patients (five males; mean 9 age=63yrs; median illness duration=14m), who used a telemonitoring device for 24 weeks. 10 Caregivers were present at five of the interviews; they supported communications and provided 11 their feedback. Interviews were audio recorded and transcribed verbatim. Thematic analysis was 12 conducted to find overarching themes. 13 Results: Five themes were identified: Benefits of Timely Intervention, Reducing the Unnecessary, 14 Increased Self-Awareness, Taking Initiative, and Technical Challenges. Overall, timely interventions 15 were observed as a result of regular monitoring, contributing to both physical and psychological 16 well-being of the participants. The patient-caregiver dyads suggested that telemonitoring could 17 reduce costs, save time and ameliorate hassles associated with attending hospital appointments. 18 Participants articulated that telemonitoring enabled symptom awareness and interpretation; the 19 device also enabled the participants to raise concerns and/or requests to the healthcare 20 professionals via the messaging system. Participants confirmed that the telemonitoring device was 21 easy to use, despite some technical issues.

Patient experiences with technology enabled care across healthcare settings- a systematic review

“…For example, type 2 diabetes patients reported the importance of clearness of instructions, ease of use, convenience of location, and that the solution was easy to fit into daily routines. This implicated that they were satisfied with the solution [ 40 , 47 , 55 , 56 ].…”

“…Nevertheless, patients also reported of technical challenges. One patient continuing stroke rehabilitation stated: «The keyboard is that frustrating I just couldn't be bothered trying to get it to work because it wouldn't» [40]. Other challenges reported by patients were oximetry transmission, device fault, mobile signal loss, immobility of the device, and difficulties placing the device on the body [40,41,46].…”

“…One patient continuing stroke rehabilitation stated: «The keyboard is that frustrating I just couldn't be bothered trying to get it to work because it wouldn't» [40]. Other challenges reported by patients were oximetry transmission, device fault, mobile signal loss, immobility of the device, and difficulties placing the device on the body [40,41,46]. One study found that the device only functioned with wired internet that had to be connected through a cable through the telephone port in a patient's house, which was reported as a problem by patients [46].…”

“…Patient reports from an e-Health solution for a biopsychosocial treatment of persistent musculoskeletal pain showed that patients felt that the solution was «about me», and allowed them to take part in a flexible framework of own priority [52]. A study on telemonitoring in motor neuron disease found that patients emphasized the benefits of timely intervention, reducing unnecessary actions and doctors' visits [40]. Several studies emphasized the importance of patient participation, understood as taking part in a structured and flexible concept with opportunities to influence and a variety of treatments to choose according to one's own needs and priorities.…”

Telehealth as part of specialized ALS care: feasibility and user experiences with “ALS home-monitoring and coaching”

“…In two other studies, good adherence with (bi-)weekly home-based selfmonitoring was observed (14,15). Accordingly, patients reported that technology was user-friendly and self-monitoring was easy (15,16).…”