Talking About Breast Cancer: Which Symptoms and Treatment Side Effects are Important to Patients with Advanced Disease?

Abstract

Background: Patients’ experience of symptoms and associated treatment is an increasingly important consideration in both regulatory and health technology assessments, and can inform treatment decisions. Objective: This study aimed to gain insight directly from patients with advanced breast cancer about which symptoms and treatment side effects are important to them. Methods: Women with locally advanced or metastatic breast cancer were interviewed individually by trained interviewers, using a semi-structured interview guide. Verbatim transcripts were analyzed qualitatively, including whether symptoms were mentioned spontaneously (indicating their importance to patients) or only when questioned directly. Results: Sixteen women (aged 38–74 years) participated. The most commonly reported symptom aspects were: pain (16/16 [all reported spontaneously]); feeling tired/fatigued (15/16 [12 spontaneously]); changes in weight (15/16 [2 spontaneously]); hair loss (15/16 [5 spontaneously]); changes in appetite (11/16 [8 spontaneously]); nausea (9/16 [all spontaneously]). Pain was attributed mostly to the disease or to its treatment. Tiredness, changes in weight/appetite, and hair loss were attributed mostly to the treatment. All women (14 spontaneously) reported that the cancer affected their emotional well-being and their ability to perform daily activities. Conclusions: Further qualitative research is needed to understand how patients distinguish cancer-related symptoms from treatment-related side effects, to gain insight into which patient experiences should be measured and how best to measure them.