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Mioshi, E., Grant, K., Flanagan, E., Heal, S., Copsey, H., Gould, R. L., Hammond, M. 
ORCID: https://orcid.org/0000-0002-0739-3412, Shepstone, L. and Ashford, P. A.
(2024)
An online intervention for carers to manage behavioral symptoms in motor neuron disease (MiNDToolkit): A randomized parallel multi-center feasibility trial.
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 25 (5-6).
pp. 506-516.
ISSN 2167-8421
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Abstract
Background: Evidence on management of behavioral symptoms in motor neuron disease (MND) is lacking. The MiNDToolkit, an online psychoeducational platform, supports carers dealing with behavioral symptoms (BehSymp). The study objectives were to ascertain recruitment and retention rates, carer and healthcare professional (HCP) use of the platform, and completion of online assessments, to inform a full-scale trial. Design: Randomized, parallel, multi-center, feasibility trial. Setting: England and Wales, across diverse MND services; recruitment from July/21 to November/22; last participant follow-up in March/23. Participants: Carers of people with motor neuron disease (PwMND) with BehSymp, recruited through MND services. After confirming eligibility, participants completed screening and baseline assessments online via the MiNDToolkit platform and were randomized centrally in a 1:1 ratio to MiNDToolkit or control. Intervention: MiNDToolkit offered tailored modules to carers for the 3-month study period. Carers in the intervention group could receive additional support from MiNDToolkit trained HCPs. The control group was offered access to the intervention at the end of the study. Data were collected on platform usage and psychosocial variables. Main outcomes: One hundred and fifty-one carers from 11 sites were invited to join the study (letter, face-to-face); 30 were screened; 29 were randomized. Fifteen people were allocated to the control arm; 14 to intervention. Carers were mostly female; median age for was 62.5 (IQR: 58, 68; intervention) and 57 (IQR: 56, 70; controls). Study retention was high (24/29 = 82.76%); carers engaged with the platform on average 14 times (median (IQR):14.0 (10.0, 18.5)) during the study period. Conclusion: The MiNDToolkit study was feasible and well accepted by carers and trained HCPs. A definitive trial is warranted.
| Item Type: | Article |
|---|---|
| Additional Information: | Funding Information: EM, RLG, KG, PAA, HC, EF, and LS were funded by the MND Association. EM was funded by the NIHR Clinical Research Network East of England, the NIHR Applied Research Collaboration East of England, and MND Scotland. EM provided consultancy for LifeArc. EM is a member of the MND Association Healthcare Research Panel and NIHR DLAF committee. SH and MH report no disclosures. |
| Uncontrolled Keywords: | alsftd,amyotrophic lateral sclerosis,behavioral symptoms,caregiver,carer,feasibility,motor neurone disease,trial,neurology,clinical neurology ,/dk/atira/pure/subjectarea/asjc/2800/2808 |
| Faculty \ School: | Faculty of Medicine and Health Sciences > School of Health Sciences Faculty of Medicine and Health Sciences > Norwich Medical School |
| UEA Research Groups: | Faculty of Medicine and Health Sciences > Research Centres > Norwich Institute for Healthy Aging Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health Faculty of Medicine and Health Sciences > Research Groups > Norwich Clinical Trials Unit Faculty of Science > Research Groups > Norwich Epidemiology Centre Faculty of Medicine and Health Sciences > Research Groups > Norwich Epidemiology Centre |
| Related URLs: | |
| Depositing User: | LivePure Connector |
| Date Deposited: | 18 Jul 2024 16:31 |
| Last Modified: | 15 Oct 2024 00:30 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/95958 |
| DOI: | 10.1080/21678421.2024.2350658 |
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