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.” | |