Supporting airway clearance in the community for people living with a neuromuscular disorder

Research Question Is it feasible to support people living with a neuromuscular disorder to manage their respiratory needs at home using a co-designed self-management intervention package (ACT@HOME)? Background Acute respiratory infections and respiratory failure are the leading causes of morbidity and mortality for people living with a neuromuscular disorder. Management of respiratory needs, including clearance of airway secretions, can reduce respiratory infections and prevent hospital admissions, ultimately improving life span and quality of life. Despite this, only one-third of adults with neuromuscular disorder receive specialist respiratory care as per guidelines. Existing literature, our own research and PPIE activities all tell us that people living with neuromuscular disorders need support to self-manage their respiratory needs at home. We therefore propose to co-design and evaluate the feasibility of ACT@HOME: an intervention to enable people living with a neuromuscular disorder (and their carers) to use Airway Clearance Techniques at home. Aims: (1) To co-design the "ACT@HOME" intervention so that people with a neuromuscular disorder can better manage unmet respiratory needs at home; (2) To assess feasibility of delivering ACT@HOME to people with a neuromuscular disorder. Objectives: (1) Convene co-design workshops: support people living with a neuromuscular disorder, their carers, and health professionals to: a. co-design the ACT@HOME support package b. select measures of feasibility and impact of ACT@HOME, for use in the subsequent feasibility study (2) Develop ACT@HOME: produce/gather the materials and processes necessary to deliver the co-designed ACT@HOME support package in a feasibility study. (3) Conduct a feasibility study, to assess: a. acceptability, adherence, burden, and costs associated with delivery of ACT@HOME b. the impact of ACT@HOME, to inform any future trial design (i.e. selection of primary outcome and sample size). (4) Decide on progress towards national clinical trial. Methods There are four stages to the workplan: Three workshops will enable people with a neuromuscular disorders, their carers, and health professionals to co-design the ACT@HOME support package. The research team will compile the materials/process required to deliver the ACT@HOME support package in a feasibility study. A feasibility study will be conducted, involving 40 people living a neuromuscular disorder using the ACT@HOME package. Measures of feasibility (acceptance, adherence, burden, costs) and impact of ACT@HOME (on knowledge, skills and self management behaviour) will be taken via questionnaire, focus groups and interviews. An inclusive clinical, academic and patient/carer group will decide whether to progress to a full trial for the ACT@HOME package, using integration of the data on feasibility and impact of ACT@HOME. Anticipated impact and dissemination ACT@HOME will offer greater autonomy and personalisation of how respiratory difficulties due to neuromuscular disorders are managed, i.e. care at the right time, in the right place, with the right people supporting, and in ways that are acceptable to people in their own lives/circumstances. Improved self-management will lead to improved life span and quality of life, plus reduced utilisation of healthcare services (e.g. pharmacy, primary care, out of clinic support, A&E, fewer outpatient appointments, hospital admissions, critical care medication/therapy).