Abstract
Background
Breathlessness that persists despite treatment of causal disease(s) is disabling, associated with high therapy-related costs and poor socioeconomic outcomes. Low resource countries bear a disproportionate burden of respiratory problems, often characterised by disabling breathlessness. Low-cost self-management breathlessness-targeted interventions are effective and deliverable in community settings but have been developed in high-income countries. We aim to understand how breathlessness self-management works in ‘real life’ populations and cultural contexts, to develop programme theory and co-design a prototype intervention to improve persistent breathlessness management in India.
Methods and analysis
Using a Realist approach, Intervention Mapping and the Medical Research Council Complex Intervention Framework we will undertake two phases of work supported by our Expert Group (of respiratory, primary, palliative care physicians) and key stakeholder groups (opinion leader clinicians, community health workers and people with lived experiences of breathlessness). 1) Realist review and evaluation to identify and refine evidence and theory for breathlessness self-management, producing intervention and implementation programme theory. We will identify literature through our Expert Group, scoping searches and systematic searches (Medline, Ebscohost, CINAHL, Scopus, Psychinfo). We will map intervention components to ‘what works, for whom, and where.’ 2) Intervention development using Intervention Mapping to map intervention and implementation programme theory to intervention components, develop materials to support intervention delivery, and co-design a prototype educational intervention ready for early acceptability and delivery-feasibility testing and evaluation planning in India. Use of stakeholder groups is to allow people with experience of breathlessness and/or its management to contribute their views on content developed by our team based upon review of secondary data sources. Experts and Stakeholders are therefore not research subjects but are included as extended members of the study team and will not follow informed consent procedures. Experts and stakeholders will be acknowledge in outputs arising from our project if they wish to be. Our review conduct will be consistent with RAMESES quality standards.
Discussion
At the conclusion of our study, we will have co-designed a breathlessness intervention for use in the community setting in India ready for further evaluation of: effectiveness, socioeconomic outcomes, acceptability and transferability to other low resource settings.
Funder
UKRI Medical Research Council
Publisher
Public Library of Science (PLoS)
Reference40 articles.
1. Towards an expert consensus to delineate a clinical syndrome of chronic breathlessness;MJ Johnson;Eur Resp Journal,2017
2. Activities Forgone because of Chronic Breathlessness: A Cross-Sectional Population Prevalence Study.;S Kochovska;Palliat Med Rep,2020
3. The Breathing, Thinking, Functioning clinical model: a proposal to facilitate evidence-based breathlessness management in chronic respiratory disease.;A Spathis;Npj Resp Prim Care Resp Med,2017
4. Lower workforce participation is associated with more severe persisting breathlessness.;J Clark;BMC Pul Med,2022
5. Health service utilisation associated with chronic breathlessness: random population sample.;DC Currow;ERJ Open Res,2021