What is Symptom Burden: A Qualitative exploration of Patient Definitions

Abstract

Current definitions of “symptom burden” are largely derived from clinicians, and there are many variations in the way the term is used, defined, and operationalized. The aim of this study was to explore patient perceptions of symptom burden in the context of advanced and incurable disease. A group of 58 cancer patients followed by a palliative care team answered a single open-ended question: “Please define ‘symptom burden.”’ Three authors independently coded and analyzed patient responses using a grounded theory approach. They identified six themes, the most frequently coded of which were: “can't do usual activities,” “psychological suffering,” and “specific severe symptoms.” Our findings indicate that the concept of symptom burden is complex and extends beyond numerical symptom-scoring systems. In addition to inquiring about specific symptoms, it may be important to directly ask patients about their overall burden or experience of symptoms.