Process evaluation and exploration of telehealth in motor neuron disease in a UK specialist centre

Hobson, Esther; Baird, Wendy; Bradburn, Michael; Cooper, Cindy; Mawson, Sue; Quinn, Ann; Shaw, Pamela J.; Walsh, T. F.; McDermott, Christopher J.

doi:10.1136/bmjopen-2018-028526

Cited by 30 publications

(49 citation statements)

References 40 publications

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“…We also conducted a process evaluation of the TiM to understand how the system was used and to identify some of the potential impacts of the TiM on participants, carers and the MND service. This is reported in a parallel publication 29…”

Section: Introductionsupporting

confidence: 55%

“…A detailed description of the TiM has been published 22. The use of the TiM in this trial is described in detail in the parallel publication describing the process evaluation 29. In brief patients and carers were asked to complete weekly sessions answering questions about their condition (such as functional ability, symptoms, depression and anxiety symptoms, carer strain) and patients recorded their weight and balance.…”

Section: Methodsmentioning

confidence: 99%

“…Use of the intervention: frequency of use of TiM by participants (collected automatically by the TiM system), participant satisfaction with TiM (questionnaires) and telehealth nurse time using TiM using two fortnight diaries (see parallel paper for additional results) 29…”

Section: Methodsmentioning

confidence: 99%

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Using telehealth in motor neuron disease to increase access to specialist multidisciplinary care: a UK-based pilot and feasibility study

et al. 2019

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ObjectivesCare of patients with motor neuron disease (MND) in a specialist, multidisciplinary clinic is associated with improved survival, but access is not universal. We wanted to pilot and establish the feasibility of a definitive trial of a novel telehealth system (Telehealth in Motor neuron disease, TiM) in patients with MND.DesignAn 18-month, single-centre, mixed-methods, randomised, controlled pilot and feasibility study.InterventionTiM telehealth plus usual care versus usual care.SettingA specialist MND care centre in the UK.ParticipantsPatients with MND and their primary informal carers.Primary and secondary outcome measuresRecruitment, retention and data collection rates, clinical outcomes including participant quality of life and anxiety and depression.ResultsRecruitment achieved the target of 40 patients and 37 carers. Participant characteristics reflected those attending the specialist clinic and included those with severe disability and those with limited experience of technology. Retention and data collection was good. Eighty per cent of patients and 82% of carer participants reported outcome measures were completed at 6 months. Using a longitudinal analysis with repeated measures of quality of life (QoL), a sample size of 131 per arm is recommended in a definitive trial. The methods and intervention were acceptable to participants who were highly motivated to participate to research. The low burden of participation and accessibility of the intervention meant barriers to participation were minimal. However, the study highlighted difficulties assessing the associated costs of the intervention, the challenge of recruitment in such a rare disease and the difficulties of producing rigorous evidence of impact in such a complex intervention.ConclusionA definitive trial of TiM is feasible but challenging. The complexity of the intervention and heterogeneity of the patient population means that a randomised controlled trial may not be the best way to evaluate the further development and implementation of the TiM.Trial registration number ISRCTN26675465.

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Section: Introductionsupporting

confidence: 55%

Section: Methodsmentioning

confidence: 99%

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Using telehealth in motor neuron disease to increase access to specialist multidisciplinary care: a UK-based pilot and feasibility study

et al. 2019

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“…This was likely a result of the complexity of reporting and the high number of daily assessments in this study. 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).…”

Section: Low Burdenmentioning

confidence: 91%

“…So far, previous research on the use of telehealth in ALS has reported on home-based self-monitoring, videoconferencing, the store and forward method, and remote monitoring of noninvasive ventilation (17). A parallel publication reported on the use of a telehealth system similar to ALS Home-monitoring and Coaching, which also included a patient app for self-monitoring, a clinical portal, alerts and a telehealth nurse (15,18). In this trial, patients and caregivers reported that telehealth was easy to use, self-monitoring did not cost a lot of time and they would recommend telehealth to others.…”

Section: Low Burdenmentioning

confidence: 99%

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

Helleman

Eenennaam

Kruitwagen

et al. 2020

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

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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.

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Home-monitoring of vital capacity in people with a motor neuron disease

et al. 2022

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Background Home-monitoring of spirometry has the potential to improve care for patients with a motor neuron disease (MND) by enabling early detection of respiratory dysfunction and reducing travel burden. Our aim was to evaluate the validity and feasibility of home-monitoring vital capacity (VC) in patients with MND. Methods We included 33 patients with amyotrophic lateral sclerosis, progressive muscular atrophy or primary lateral sclerosis who completed a 12-week home-monitoring protocol, consisting of 4-weekly unsupervised home assessments of VC and a functional rating scale. At baseline, during a home visit, patients/caregivers were trained in performing a VC test, and the investigator performed a supervised VC test, which was repeated at final follow-up during a second home visit. Validity of the unsupervised VC tests was evaluated by the differences between supervised and unsupervised VC tests, and through Bland–Altman 95% limits-of-agreement. Feasibility was assessed by means of a survey of user-experiences. Results The 95% limits-of-agreement were [− 14.3; 11.7] %predicted VC, and 88% of unsupervised VC tests fell within 10%predicted of supervised VC. 88% of patients experienced VC testing as easy and not burdensome, however, 15% patients did not think their VC test was performed as well as in the clinic. 94% of patients would like home-monitoring of VC in MND care. Discussion Unsupervised VC testing at home, with prior face-to-face training, is a valid and time-efficient method for the remote monitoring of respiratory function, and well-accepted by patients with MND and their caregivers.

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Process evaluation and exploration of telehealth in motor neuron disease in a UK specialist centre

Cited by 30 publications

References 40 publications

Using telehealth in motor neuron disease to increase access to specialist multidisciplinary care: a UK-based pilot and feasibility study

Using telehealth in motor neuron disease to increase access to specialist multidisciplinary care: a UK-based pilot and feasibility study

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

Home-monitoring of vital capacity in people with a motor neuron disease

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