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Table 3 Patient-reported HR+/HER2- advanced breast cancer disease-and treatment-related concepts reported by ≥33.3% of patients (frequencies and descriptions)

From: Understanding key symptoms, side effects, and impacts of HR+/HER2- advanced breast cancer: qualitative study findings

Concept Concept descriptiona Frequency of patient reportb N = 15 n (%) Most bothersome to patientc N = 15 n (%) Most frequent to patientd N = 15 n (%) Attributed to disease or treatment by patiente N = 15 n (%)
Fatigue/tiredness “Um, now there are days when you’re really tired or you wake up and you feel weak. But it’s not every day. It’s just some days that you’re, you’re tired and you’re weak.” (01–01-F-79) 12 (80.0%) 2 (13.3%) 1 (6.7%) Disease-related: 7 (46.7%)
Treatment-related: 7 (46.7%)
Unable to attribute: 0 (0.0%)
Hair loss “I lost all of my hair. See, it’s coming back up there. I’m still losing it. … And my hair came back totally different. It used to be red. … You know, and now it’s like dark. Q: Uh-huh. A: You know, and kind of curly, and it was never curly, and so it came back totally different.” (01–07-F-45) 10 (66.7%) 1 (6.7%) 1 (6.7%) Disease-related: 0 (0.0%)
Treatment-related: 10 (66.7%)
Unable to attribute: 0 (0.0%)
General pain “I say bad, you know, just – well the only thing that really, really hurt me a lot was my legs. My legs were just – it, it felt to where I could barely walk sometimes. … Towards the end of the treatment it would get a little better. But even after the treatment stopped, um, the pain in my legs were so bad I had to end up going back to the doctor to see maybe it was something
else.” (01–02-F-70)
7 (46.7%) 2 (13.3%) 3 (20.0%) Disease-related: 4 (26.7%)
Treatment-related: 4 (26.7%)
Unable to attribute: 1 (6.7%)
Lump in breast “I found the lump myself and, um, putting on my deodorant and I saw an inversion in my breast and I knew that was a sign of breast cancer. … the first one I felt was like hard as a rock. … I could see them. They were out. They weren’t in, you know, where you could just feel it. They were out. They were popping out.” (01–10-F-68) 7 (46.7%) 0 (0.0%) 0 (0.0%) Disease-related: 7 (46.7%)
Treatment-related: 0 (0.0%)
Unable to attribute: 0 (0.0%)
Nausea “Um, with the chemo I was nauseated, um, a lot. I didn’t want to eat because of the, um, smells of the food. And it just was hard to keep down. … It just feels like I, I have to, um, throw up. But it’s just, um, put like this – I don’t know. Like this – you know how when you, um, you smell some food that don’t smell good to your taste and it be like, ugh, and sometimes it makes your stomach quiver. That’s how the nausea makes my stomach feel. And it feels like I want to throw up, but it’s like it’s just stuck right in my throat, in my chest area.” (01–07-F-45) 6 (40.0%) 0 (0.0%) 2 (13.3%) Disease-related: 1 (6.7%)
Treatment-related: 6 (40.0%)
Unable to attribute: 0 (0.0%)
Shortness of breath “You know, because I did have shortness of breath, but that was with the drip chemo. … Because I would get to where I couldn’t talk, you know, and it would like it would be hard to breathe, and I’d have to stop, you know, and get – you’re making me experience all this stuff again. … Ah, but you know, it was like I couldn’t breathe, and then I would have to stop and then, you know, catch my breath to be able to talk again, and it would last about a week, you know.” (01–05-F-62) 6 (40.0%) 3 (20.0%) 2 (13.3%) Disease-related: 3 (20.0%)
Treatment-related: 2 (13.3%)
Unable to attribute: 0 (0.0%)
Weakness “But then, you know, you get up and then you have to sit back down. … don’t know what happened because I had done chemo like two months and then I just felt weak all over. I don’t know what happened, but, uh, they had put me in a wheelchair because I was never in a wheelchair before. I couldn’t sit up. I remember leaning over in the chair. I, I was dying. I was out. I couldn’t sit up. I couldn’t use my cell phone to call my family. I was just weak and tired.” (03–01-F-70) 5 (33.3%) 1 (6.7%) 1 (6.7%) Disease-related: 1 (6.7%)
Treatment-related: 4 (26.7%)
Unable to attribute: 1 (6.7%)
  1. aConcept descriptions are based on aggregated quotes from the total sample
  2. bFrequency is presented as the total count for each concept reported at least once by at least one-third of patients; all signs, symptoms, and side effects were spontaneously reported by the patient without prior mention by the interviewer. The following concepts were reported by fewer than one-third of patients: diarrhea, lymphedema, neuropathy, skin burn, altered taste, constipation, feeling unwell, injection site reaction, joint pain, loss of appetite, vomiting, bone pain, dizziness, headache, hot flashes, indent in breast, memory loss, mouth sores, nail issues, neck swelling, stiffness, stomach pain, acid reflux, allergic reaction, bleeding, bloating, breast size decrease, chemotherapy brain, cough, flu-like symptoms, lung fluid build-up, flushing, gout, itching, lack of balance, lymph node inflammation, runny nose, skin peeling, sore throat, vaginal bleeding, weight gain (Additional file: 2 Table S1)
  3. cFrequency is presented as the total count for each concept reported as most bothersome by the patients
  4. dFrequency is presented as the total count for each concept reported as most frequent by the patients
  5. eFrequency is presented as the total count for each concept reported as disease-related, treatment-related, and/or unsure attribution; frequency counts for concept attribution are not mutually exclusive