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:OBJECTIVE:To evaluate the feasibility and acceptability of a personalised telehealth intervention to support dietary self-management in adults with stage 3-4 chronic kidney disease (CKD). DESIGN:Mixed-methods process evaluation embedded in a randomised controlled trial. PARTICIPANTS:People with stage 3-4 CKD (estimated glomerular filtration rate [eGFR]15-60 mL/min/1.73 m2). SETTING:Participants were recruited from three hospitals in Australia and completed the intervention in ambulatory community settings. INTERVENTION:The intervention group received one telephone call per fortnight and 2-8 tailored text messages for 3 months, and then 4-12 tailored text messages for 3 months without telephone calls. The control group received usual care for 3 months then non-tailored education-only text messages for 3 months. MAIN OUTCOME MEASURES:Feasibility (recruitment, non-participation and retention rates, intervention fidelity and participant adherence) and acceptability (questionnaire and semistructured interviews). STATISTICAL ANALYSES PERFORMED:Descriptive statistics and qualitative content analysis. RESULTS:Overall, 80/230 (35%) eligible patients who were approached consented to participate (mean±SD age 61.5±12.6 years). Retention was 93% and 98% in the intervention and control groups, respectively, and 96% of all planned intervention calls were completed. All participants in the intervention arm identified the tailored text messages as useful in supporting dietary self-management. In the control group, 27 (69%) reported the non-tailored text messages were useful in supporting change. Intervention group participants reported that the telehealth programme delivery methods were practical and able to be integrated into their lifestyle. Participants viewed the intervention as an acceptable, personalised alternative to face-face clinic consultations, and were satisfied with the frequency of contact. CONCLUSIONS:This telehealth-delivered dietary coaching programme is an acceptable intervention which appears feasible for supporting dietary self-management in stage 3-4 CKD. A larger-scale randomised controlled trial is needed to evaluate the efficacy of the coaching programme on clinical and patient-reported outcomes. TRIAL REGISTRATION NUMBER:ACTRN12616001212448; Results.

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.

Similar Datasets

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