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

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.