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. Author manuscript; available in PMC: 2022 Nov 15.
Published in final edited form as: Int J Radiat Oncol Biol Phys. 2021 Jul 24;111(4):979–991. doi: 10.1016/j.ijrobp.2021.07.1692

Table 3.

Major themes from patient interviews

Theme Description Patient Quote

Overall Acceptability Participants found the Breast PRO to be comprehensive and relevant “These are all the right questions because they cover the symptoms from radiation that people get.”
“I knew what to expect, in case I had a symptom that I didn ’t know and needed something”
“They were helpful with explaining how I was feeling”
“She [the patient] liked them because she knows that someone was looking at them and someone cared about her”
Question comprehension and Feedback Items pertaining to skin changes were redundant “Skin color, sensation, itchy, dry, skin breakdown. They are all kind of similar”
“Pain with swallowing” not relevant to some patients “Struck me as a question for someone with a different type of treatment.”
Difference between “tenderness” and “pain” “To her it means if she touches her skin and there it is tender that is tenderness, while pain is already there even if she doesn ’t touch it”
Difference between tenderness and “sensation” “Sensation is more topical and tenderness is internal.”
Preference to separate “tenderness” from “enlargement” “A lot of people don’t know that enlargement is an issue. They see it as swelling and that it will go down but in reality it could get worse.”
“A space for a text box to just include any comments you have for your doctor”
Additional items: comment box and skin color changes “I would have liked to see something that explores how the patient feels about the severity of the skin discoloration.”
Barriers to Survey Completion Clinical relevance unclea. “I didn’t see the worth... Towards the end of treatment I told somebody, ‘don’t ask me, I don’t want to participate in any more studies”
Weekly responses a burden “Not much changes on a week to week basis”
“Once you are done with treatment you are very done.”
Issues with Email alerts “It is harder for older women who don’t do all of the electronic stuff”
Preferences for Care Team Response Surprise at worsening symptoms “The doctor had warned me but I was surprised by how much worst they got.”
Reassurance from Care Team “[They can reach out with] Either a solution or assurance I guess. I understand that somethings don ’t have a solution at that time but if you could assure me that the symptom is normal, that would make me feel better”
Severity requiring outreach from nurse “She [the nurse] put me at ease. She said what I experienced was accurate”
“I have to be in pain that is consistent and is not going away or having a fever. It would have to be severe.”
Information Preferences Interest in graph showing reported vs. expected symptoms “Knowing what’s expected gives more understanding.”
Concern about impact of graph on anxiety levels “I don’t want to know where I fall because if Ifall bad I am never going to forget that.”