King's College London

Context Breathlessness is common and distressing in advanced illness. It is a challenge to assess, with few effective treatment options. To evaluate new treatments, appropriate outcome measures which reflect the concerns of people experiencing breathlessness are needed. Objectives To systematically review and synthesise the main concerns of people with advanced illness experiencing breathlessness to guide comprehensive clinical assessment and inform future outcome measurement in clinical practice and research. Methods Systematic review following PRISMA methodology. MEDLINE (1946-2017), PsycINFO (1806-2017), and EMBASE (1974-2017), as well as key journals, grey literature, reference lists, and citation searches identified qualitative studies exploring the concerns of people living with breathlessness. Included studies were quality assessed using the Critical Appraisal Skills Program checklist, and analysed using thematic synthesis. Results We included thirty-eight studies with 672 participants. Concerns were identified across six domains of ‘total’ breathlessness; physical, emotional, spiritual, social, control, and context (chronic and episodic breathlessness). Four of these have been previously identified in the concept of ‘total dyspnoea’. Control and context have been newly identified as important, particularly in their influence on coping and help-seeking behaviour. The importance of social participation, impact on relationships, and loss of perceived role within social and spiritual domains also emerged as being significant to individuals. Conclusion People with advanced illness living with breathlessness have concerns in multiple domains, supporting a concept of ‘total breathlessness’. This adapted model can help to guide comprehensive clinical assessment, and inform future outcome measurement in clinical practice and research.