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. Author manuscript; available in PMC: 2022 Jul 22.
Published in final edited form as: Qual Life Res. 2020 Feb 28;30(11):3213–3227. doi: 10.1007/s11136-020-02442-4

Table 3.

Key interview quotes on perceived value of ePRO system, overall and by race

Key qualitative interview findings: perceived value Quotes reflecting patterns among overall participants Quotes reflecting differences between Black and White participants (where applicable)

Participants described several benefits from the ePRO system (e.g., better understanding their symptoms). Black participants focused on how the ePRO system helped them better understand their disease/symptoms, whereas White participants noted additional specific benefits (e.g., tracking symptoms over time) I think it probably made me think mere concisely about symptoms. When I did talk to the doctor, I could express what was going on better.” (White participant) Black: “[It] just gives you more knowledge of your body, what to look for, so that you can conversate with your physician” (Black participant)
White: “I see a self-awareness of where I was and where I am now. I think that was—looking at it in that form, I realized how much I have improved physically” (White participant)
I would choose to [continue completing it] because it’s a survey that’s part [of a] study. It’s gonna help science” (Black participant)
Participants suggested additional health or symptom-related items to include in the ePRO system (e.g., about comorbid conditions). Suggestions generally came from White participants Well, the only other thing, you know, and I’m being treated for prostate cancer, but I also have diabetes. I’m being treated by that up here. The two—how do I say this—the two are really hard sometimes to take care of both at one time. Somebody in the survey needs to realize that people are being treated for multiple situations, what effect you have with one versus the other.” (White participant) N/A (suggestions generally came from White participants)
Participants described key barriers that may be helpful to include in the ePRO system I live two hours’ drive. I can’t get no transportation.” (Black participant)
I think any of those things, especially barriers to getting symptoms diagnosed. Barriers to getting questions answered. Getting help from the provider. Those are probably the most important. Things like cost of medications. Transportation. Location. Timing of appointments. All of those things that are also barriers, I mean, you can also look at that. ” (White participant)
N/A (suggestions were generally consistent among Black and White participants)
A small minority of participants (who were mostly White) said that the survey was not helpful because it made no difference in their treatment. When Black participants provided negative feedback about the ePRO system’s value, they often hedged their comments and/or paired them with positive observations, whereas White participants did not hedge negative feedback It just didn’t seem like it was an advantage or a disadvantage. Just another form to fill out but it didn’t have much impact on my life, to be honest” (White participant) Black: “...I’m not sure that the survey was a [benefit] to me at all... ‘Cause like I said, everybody at the clinic was pretty thorough when I was there. I don’t think they missed anything when it came to my prostatectomy” (Black participant)
White: “I can’t say it made any difference.” (White participant)