Experiences of breathlessness: a systematic review of the qualitative literature

Breathlessness is one of the core symptoms in many advanced conditions. The subjective nature of the symptom has been acknowledged in many definitions, emphasizing that it can only be fully perceived and interpreted by the patients themselves.

To review and assess the evidence on the psychosocial nature or experience of breathlessness.

Relevant literature was identified through electronic and hand searches. Studies with qualitative enquiry or mixed method designs were included. The methodological quality of studies was assessed with a standard grading scale.

Twenty-two studies were identified, 12 from the United Kingdom, 4 from the United States, 3 from Canada, 1 from Sweden, 1 from Iceland, and 1 from Finland. The nature of the studies determined the themes in which the studies were subsumed. Studies on COPD (19) outnumbered "all other conditions" (3), one of which had COPD and cancer patients and so these were analyzed separately. Within the COPD category most studies (17) considered the experience of breathlessness from the perspective of the patient, 1 study from the informal carer, and 1 from the professional carer. Most of the papers sought to understand the meaning of the symptom in the patient's daily life. The other papers demarcated separate areas of the experience of acute exacerbations and the patient's view on care. The studies explored the subjective component of breathlessness, as part of human experience and social life. The papers showed the influence of the meaning the symptom has for those affected on their ability to cope and on their management.

Although the work in this area is still dominated by research on COPD, the totality of the evidence now shows breathlessness as an intractable symptom in other advanced conditions. Practice recommendations focused on the holistic approach as part of palliative and nursing care.