ADAPT-NMD: a hybrid II study exploring the feasibility a self-management programme for people with neuromuscular disorders

Louie Lee, Stefan Kulnik, Annette Boaz, Gita Ramdharry, Geoffrey Curran
Purpose:

This study aimed to explore the feasibility of delivering and evaluating the new Neuromuscular Bridges intervention, whilst simultaneously testing the feasibility of implementation strategies to promote uptake at a specialist neuromuscular centre. 

Methods:

The study employed a stakeholder-engaged hybrid II approach, permitting a dual focus on the feasibility of both delivering and implementing Neuromuscular Bridges. It was underpinned by Normalisation Process Theory (NPT), which informed the implementation plan prospectively and was invoked in the analysis. The feasibility of delivering and evaluating Neuromuscular Bridges was assessed using a mixed-methods, multiphase, single-arm, pre-post design. The risk of intervention leak precluded the possibility of an randomised controlled trial. The study explored acceptability to patients and clinicians, demand,  outcome measure performance, recruitment, and retention. Implementation strategies were selected from a refined taxonomy, mapped to NPT, and targeted known contextual barriers and facilitators identified from preliminary stakeholder engagement activities. Intervention tailoring included the co-design of resources with patients and clinicians at the centre. The evaluation measured the impact of the strategies on fidelity, acceptability, appropriateness, and adoption using session observations, qualitative interviews, administrative data, patient-reported outcome measures, and established implementation instruments. 

Results:

Thirty-three patient participants were enrolled in the study, and six specialist neuromuscular clinicians (physiotherapists and nurses) delivered the intervention. The patient sample was predominantly male (63.64%) with a mean age of 51.9 and included participants with a variety of NMDs. Patient-reported outcome measures showed small to moderate positive effect sizes in domains of activation, mood, goal setting, social engagement, self-efficacy, and emotional wellbeing. The high retention rate was evidence of protocol feasibility and suggests the feasibility of scaling up to a future larger study and successful broader implementation. Implementation instruments demonstrated clinician satisfaction, adherence to protocol, appropriateness, integration, and overall acceptability. Methodological triangulation underscored the alignment and intersection of the qualitative and quantitative data across the study, and highlighted the converging lines of enquiry, further corroborating the findings. 

Conclusion(s):

In the absence of cure, comprehensively developed and evaluated interventions for NMDs are needed. Neuromuscular Bridges is the first broad-based SMS programme developed for this population, marking a crucial step in neuromuscular care. The findings provide valuable feasibility data enhancing understandings of the factors and requirements for its successful delivery, evaluation, and implementation. 

Implications:

Insights can support a future evaluation of effectiveness of Neuromuscular Bridges in a definitive trial and support roll out for use by physiotherapists, Allied Health Professionals, and nurses in other specialist centres.   

Funding acknowledgements:
The work was completed as part of a doctoral fellowship funded by Muscular Dystrophy UK.
Keywords:
Self-management
Neuromuscular Disorders
Implementation Science
Primary topic:
Neurology
Second topic:
Research methodology, knowledge translation and implementation science
Did this work require ethics approval?:
Yes
Name the institution and ethics committee that approved your work:
Institution: University College London. Ethical approval granted by Yorkshire & The Humber - Bradford Leeds Research Ethics Committee.
Provide the ethics approval number:
REC reference 21/YH/0092
Has any of this material been/due to be published or presented at another national or international conference prior to the World Physiotherapy Congress 2025?:
No

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