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 experience of using telehealth. This study was designed to examine the experiences of using telemonitoring in patients with MND on noninvasive ventilation (NIV).

Methods

Semi-structured interviews were conducted with seven patients (five males; mean age = 63 yrs; median illness duration = 14 m), who used a telemonitoring device for 24 weeks. Caregivers were present at five of the interviews; they supported communications and provided their feedback. Interviews were audio recorded and transcribed verbatim. Thematic analysis was conducted to find overarching themes.

Results

Five themes were identified: Benefits of Timely Intervention, Reducing the Unnecessary, Increased Self-Awareness, Taking Initiative, and Technical Challenges. Overall, timely interventions were observed as a result of regular monitoring, contributing to both physical and psychological well-being of the participants. The patient-caregiver dyads suggested that telemonitoring could reduce costs, save time and ameliorate hassles associated with attending hospital appointments. Participants articulated that telemonitoring enabled symptom awareness and interpretation; the device also enabled the participants to raise concerns and/or requests to the healthcare professionals via the messaging system. Participants confirmed that the telemonitoring device was easy to use, despite some technical issues.

Conclusions

Telemonitoring was positively experienced. The findings suggest this approach is empowering and effective in promoting patients’ well-being, while potentially reducing unnecessary clinical contact.

Implications for Rehabilitation

• Care for people with MND demands a flexible approach to accommodate the diversity of clinical needs and relentless physical deterioration.

• Telehealth allows clinicians to provide person-centred care for everyone with MND through frequent monitoring.

• Holistic and rehabilitative service facilitated by telehealth is generally acceptable and preferred to routine appointments among MND NIV patients.

• Telehealth promotes time efficient engagement with professionals that leads to symptom awareness and interpretation, while benefiting physical and psychological well-being of MND NIV patients.

Keywords:

• Telemonitoring
• telehealth
• qualitative study
• noninvasive ventilation
• motor neurone disease
• amyotrophic lateral sclerosis

Acknowledgements

We would like to thank all our participants for their contribution to this study.

This work was collaboration between Aintree University Hospital NHS Foundation Trust (AUHFT) and Docobo^Ltd., who make the Careportal^®. The technological development of telemonitoring was led by Docobo^Ltd., while AUHFT was responsible for developing a bespoke monitoring question set as well as the clinical management of patients using the telemonitoring intervention.

Disclosure statement

Rob Hallhead is a director of DOCOBOLtd who make the Careportal^® and the software used in Smart Devices.

Additional information

Funding

This work was supported by the United Kingdom’s Small Business Research Initiatives under Grant SBRI-COLAB-2594.