An online intervention for carers to manage behavioral symptoms in motor neuron disease (MiNDToolkit): a randomized parallel multi-center feasibility trial

作者：Eneida Mioshi, Kelly Grant, Emma Flanagan, S. Heal, Helen Copsey, Rebecca L. Gould, Matthew Hammond, Lee Shepstone, Polly‐Anna Ashford · 发表于：Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · 年份：2024 · DOI：10.1080/21678421.2024.2350658 · 被引用次数：8 · 研究领域：Amyotrophic Lateral Sclerosis Research、Neurogenetic and Muscular Disorders Research、Multiple Sclerosis Research Studies

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 femal...