Living well with chronic breathlessness: Improving the sustained use of supported self-management strategies

Background Chronic, or persistent, breathlessness is a disabling symptom that continues despite optimum disease-treatment.

It is associated with reduced quality of life, limited physical and social functioning, and high health service dependency.

A growing evidence-base supports the complementarity of pharmacological treatments with non-pharmacological approaches including breathing techniques, aerobic exercise and education, and interventions that address cognition and emotions.

However, our systematic reviews demonstrate a knowledge gap about how the physical and social environment and clinicians actions constrain or enable people living with chronic breathlessness to use these techniques. This study will address this implementation gap.

Aim To provide the foundation for a Feasibility Study (and subsequent multi-site, Hybrid Type III trial) to test the effectiveness of an intervention for the implementation and sustained use of supported self-management for adults living with chronic breathlessness Objectives(O) 1.To conduct a Realist Synthesis of the literature on implementing and sustaining supported self-management for chronic breathlessness 2.To use Intervention Mapping and the Promoting Action on Research Implementation in Health Services (PARIHS) framework to co-design an intervention for implementing and sustaining supported self-management for chronic breathlessness Research Questions With regard to chronic breathlessness: 1.What are the processes by which supported self-management is, or is not, implemented and sustained in routine practice?(O1;Work Package (WP)1) 2.How does the interaction of mechanisms and contexts explain the success or failure of efforts to improve the implementation and sustained use of supported self-management?(O1;WP1) 3.What are the implications of these context-mechanism-outcome configurations for the implementation and sustained use of supported self-management techniques?(O1,2;WP1,2) 4.What should be the components of an adaptable intervention for the implementation and sustained use of supported self-management techniques?(O2;WP2) Methods WP1:Realist Synthesis- To develop the theoretical basis for the intervention, we shall conduct database searches and screen sources for inclusion (rich descriptions of implementation processes) with 10% second reviewer screening.

Information and data will be extracted to thematised tables in the form of explanatory if-then-because statements, with synthesis through a process of reasoning that takes account of context.

WP2:Intervention Mapping- we shall map intervention theory to potential intervention components, targeting relevant determinants.

Through co-design with our stakeholder group (half-day workshop at Month 3,6,11 with clinicians, patients, service managers), we shall translate this 'long-list' into a practical intervention.

Potential power imbalances between professional and public members will be proactively addressed and monitored by the PPI Lead. Assurance of study equality, diversity and inclusion will be a Study Steering Committee standing item.

Timeline for delivery The realist review and co-design workshops will proceed in tandem, with the review completed by Month 8 and co-design by Month 11. Outputs will be finalised in Month 12.

Anticipated impact and dissemination This study will underpin future definitive research into the effectiveness of interventions for supported self-management of chronic breathlessness.

It therefore has the potential to transform the lives of people living with chronic breathlessness, enabling them to benefit from self-management techniques that are currently under-utilised.

Our dissemination strategy builds on the excellent engagement we have with PPI group members, clinicians, and service managers.