A poster session that took place at the San Antonio Breast Cancer Symposium highlighted the patient experience of inflammatory breast cancer (IBC) to define a content domain for a patient-reported outcome (PRO) measure of IBC symptom burden.
Prognosis is poor among patients with IBC, the study authors noted; median survival is less than four years, and the five-year survival rate hovers around 60% to 70%.
In this study, 20 patients with IBC participated in qualitative interviews to detail their experience. The researchers performed a content analysis to describe the patient experience and define the symptom burden content domain.
The mean patient age was 52.8 years (range, 30.0-73.0 years). Half of patients had locally advanced disease, and the other half had metastatic disease. At the time of the interview, 85% of patients were receiving treatment. Upon content analysis, 51 symptoms related to disease and treatment were identified; 24 of the symptoms were reported by at least 20% of patients. Patients reported an average of 13.1 symptoms (range, 3.0-23.0 symptoms). Localized disease-related symptoms at the time of diagnosis included breast rash (40%), breast texture changes (55%), nipple changes (25%), breast pain (40%), breast discoloration (70%), breast lump (55%), breast warmth (10%), and breast swelling (50%). Treatment-related symptoms differed based on each patient’s specific treatment modality. Patients also discussed how their symptoms impact their daily activities and relationships, as well as how to manage these symptoms.
The researchers observed that IBC symptoms may adversely impact patients’ daily activities, relationships, life plans, treatment adherence, and mood. They noted that well-designed PROs are required to accurately assess and manage symptoms to allow for patient functioning. “The content domain for a PRO symptom-burden measure of IBC encompasses the severity and activity interference of common symptoms of IBC and its treatment,” noted the authors.