Objectives To evaluate the processes involved in using a novel digitally enabled healthcare system (telehealth in motor neuron disease (TiM)) in people living with motor neuron disease (MND) and their informal carers. We examined TiM implementation, potential mechanisms of impact and contextual factors that might influence TiM implementation or impact.
Design An 18-month, single-centre process evaluation within a randomised, pilot and feasibility study.
Intervention TiM plus usual care versus usual care alone.
Setting A specialist UK MND care centre.
Participants 40 patients with MND and 37 primary informal carers.
Primary and secondary outcome measures Patient, carer and staff outcomes and experiences using semistructured interviews. Descriptive data on implementation and use of TiM.
Results The TiM was acceptable and accessible to patients, carers and staff. Intervention uptake and adherence were good: 14 (70%) patients completed a TiM session at least fortnightly. Barriers to TiM use (such as technology experience and disability) were overcome with well-designed technology and face-to-face training. Reported potential benefits of TiM included improved communication and care coordination, reassurance, identification of complications and the potential for TiM to be an alternative or addition to clinic. Benefits depended on patients’ current level of needs or disability. The main challenges were the large number of alerts that were generated by TiM, how the clinicians responded to these alerts and the mismatch between patient/carer expectations and nurses actions. This could be improved by better communication systems and adjusting the alerts algorithm.
Conclusion TiM has the potential to facilitate access to specialist care, but further iterative developments to the intervention and process evaluations of the TiM in different services are required.
Trial identifier number ISRCTN26675465.
- motor neuron disease
- amyotrophic lateral sclerosis
- process evaluation
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Contributors The following were involved: intervention development (CJMD, EH, TW, PJS), trial design and management (EH, MB, WB, CC, AQ, CJMD), clinical oversight (CJMD and PJS), recruitment and intervention delivery (EH and TW), data collection (EH, WB), data analysis (EH, MB, WB, CJMD, CC, SM, AQ) and manuscript preparation (all authors). All authors reviewed and commented on the manuscript. The authors are grateful to Sheffield MND Research Advisory Group for their guidance on the research methods.
Funding The TiM was developed within a collaboration between the University of Sheffield, Sheffield Teaching Hospitals NHS Trust, Mylan Ltd and Abbott Healthcare. This trial was funded by a National Institute for Health Research (NIHR) Doctoral Research Fellowship grant to EH (DRF-2013-06-076) and the Motor Neuron Disease Association. The trial was supported by the Sheffield Teaching Hospitals NHS Trust NIHR Clinical Research Facility and the University of Sheffield Clinical Trials Unit. Mylan Ltd supplied the software and hardware required for the trial. EH is also funded by an NIHR Clinical Lecturer award. PJS is supported by NIHR Senior Investigator award NF-SI-0512-10082 and PJS and CMD by the NIHR Sheffield Biomedical Research Centre (Translational Neuroscience) IS-BRC-1215-20017.
Disclaimer The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.
Competing interests The TiM intellectual property is owned by Mylan and the University of Sheffield.
Patient consent for publication Not required.
Ethics approval Approval was gained from Leeds Bradford Research Ethics Committee (REC reference 14/YH/1068) and the sponsor (Sheffield Teaching Hospitals NHS Foundation Trust Clinical Research Office).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available upon reasonable request.
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