ADAPT-NMD study
Research type
Research Study
Full title
ADAPT NMD: A hybrid II study of the feasibility and implementation of a self-management programme for people with neuromuscular diseases
IRAS ID
282646
Contact name
Gita Ramdharry
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Clinicaltrials.gov Identifier
Data protection reference number, Z6364106/2020/11/37
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
The concept of self-management has seen a growth in interest from health policymakers over the past two decades. It is increasingly regarded as a way of reducing the burden of long-term illness and demand on health services, whilst simultaneously improving outcomes for individual patient. Despite the development of self-management support for those with long-term conditions prioritised by NHS policy makers, there are few studies developing specific self-management programs for individuals with neuromuscular diseases (NMDs).
Bridges Self-Management is an evidence based self-management programme that has been developed for people living with conditions such as stroke and traumatic brain injury. Bridges is an approach centred on the relationship between healthcare professionals and the patient and their family/carers. The approach has been developed into a co-produced programme specifically for people with NMD. It will provide a new self-management workbook that is tailored to their needs. This will be the first time both a hard copy and digital version of the workbook will be available. The setup of neuromuscular care in the UK, with a hub and spoke model via specialist services, is a new service structure for Bridges. The feasibility of NM Bridges within this service structure will require exploration, as will the acceptability and utility of the new digital format and new NMD specific materials.
It is now widely acknowledged that implementation/translation into practice of new interventions is problematic; and therefore, it is important to prepare the ground for implementation as early as possible, to inform and maximise successful adoption in the future. With this in mind, the study will have a dual focus. It will be a feasibility 'hybrid' study aiming to evaluate the feasibility of the new Bridges self-management programme, whilst simultaneously testing an implementation strategy.
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
21/YH/0092
Date of REC Opinion
27 Apr 2021
REC opinion
Favourable Opinion