Dataset Information

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

ABSTRACT:

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.

SUBMITTER: Hobson E

PROVIDER: S-EPMC6830641 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

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Publications

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

Hobson Esther E Baird Wendy W Bradburn Mike M Cooper Cindy C Mawson Susan S Quinn Ann A Shaw Pamela J PJ Walsh Theresa T McDermott Christopher J CJ

BMJ open 20191022 10

<h4>Objectives</h4>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.<h4>Design</h4>An 18-month, single-centre process evaluation within a randomised, pilot and feasibility study.<h4>Intervention</h4>TiM plu ...[more]

PMID: 31640994

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Project description: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 numberISRCTN26675465.

Project description:People with motor neuron disease often experience non-motor symptoms that may occur secondary to, or distinct from, motor degeneration and that may significantly reduce quality of life, despite being under-recognized and evaluated in clinical practice. Non-motor symptoms explored in this population-based study include pain, fatigue, gastrointestinal issues, poor sleep, low mood, anxiety, problematic saliva, apathy, emotional lability, cognitive complaints and sexual dysfunction. People registered on the Clinical Audit Research and Evaluation of motor neuron disease platform, the Scottish Motor Neuron Disease Register, were invited to complete a questionnaire on non-motor symptoms and a self-reported Amyotrophic Lateral Sclerosis Functional Rating Scale. The questionnaire comprised a pre-defined list of 11 potential non-motor symptoms, with the opportunity to list additional symptoms. A total of 120 individuals participated in this cross-sectional study, a 39% response rate of those sent questionnaires (n = 311); 99% of participants recruited (n = 120) experienced at least one non-motor symptom, with 72% (n = 120) reporting five or more. The symptoms most often reported were pain and fatigue (reported by 76% of participants, respectively). The symptoms reported to be most impactful were gastrointestinal issues (reported as 'severe' by 54% of participants who experienced them), followed by pain and problematic saliva (51%, respectively). Lower Amyotrophic Lateral Sclerosis Functional Rating Scale scores, indicating more advanced disease and being a long survivor [diagnosed over 8 years ago; Black et al. (Genetic epidemiology of motor neuron disease-associated variants in the Scottish population. Neurobiol Aging. 2017;51:178.e11-178.e20.)], were significantly associated with reporting more symptoms; 73% of respondents were satisfied with the frequency that non-motor symptoms were discussed in clinical care; 80% of participants indicated they believe evaluation of non-motor symptom is important to include as outcomes in trials, independent of their personal experience of these symptoms. The preferred method of assessment was completing questionnaires, at home. The overwhelming majority of people with motor neuron disease report non-motor symptoms and these frequently co-occur. Pain, fatigue, gastrointestinal issues, sleep, mood, anxiety, problematic saliva, apathy, emotional lability, cognitive complaints and sexual dysfunction are prevalent. People with motor neuron disease who had worse physical function and those who were long survivors were more likely to report more symptoms. Where reported, these symptoms are frequent, impactful and a priority for people with motor neuron disease in clinical care and trial design.

Dataset Information

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

Objectives

Design

Intervention

Setting

Participants

Primary and secondary outcome measures

Results

Conclusion

Trial identifier number

Publications

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

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