Trial reportAmyotrophic lateral sclerosis & frontotemporal degeneration2024
An online intervention for carers to manage behavioral symptoms in motor neuron disease (MiNDToolkit): a randomized parallel multi-center feasibility trial.
Trial report in Amyotrophic lateral sclerosis & frontotemporal degeneration, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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Who cites it
5 citing papers in PubMed.
- STELLA-FTD: Examination of a Behavior Change Intervention for Frontotemporal Dementia Family Care Partners.Alzheimer's & dementia. Behavior & socioeconomics of aging · 2026Article
- Apathy in Cerebral Small Vessel Disease Stroke Is a Predictor of Quality of Life, Mood and Distress in Both Patients and Carers.International journal of geriatric psychiatry · 2025Article
- Does carer psychological inflexibility moderate the relationship between motor neurone disease symptomatology and carer anticipatory grief emotions?Journal of health psychology · 2025Article
- Implementation of the MiNDToolkit intervention for the management of behavioral symptoms in MND by healthcare professionals: a mixed-methods process evaluation.Amyotrophic lateral sclerosis & frontotemporal degeneration · 2024Article
- 'A lightbulb moment': carers' experiences of behavioural symptoms in motor neurone disease before and after MiNDToolkit.BMC neurology · 2024Article
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Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundEvidence 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.
settingEngland and Wales, across diverse MND services; recruitment from July/21 to November/22; last participant follow-up in March/23.
participantsCarers 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.
interventionMiNDToolkit 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.
conclusionThe MiNDToolkit study was feasible and well accepted by carers and trained HCPs. A definitive trial is warranted.
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