Illustrative quotes regarding the preferred format and content of a decision-support tool
| Theme and participant group | Quote |
|---|---|
| Information format: numerical risks | |
| Pregnant participants | “I think saying the range is from 6 to 10 would also be meaningful.” — Pr 11 [Presenting risk uncertainty] “might just start to make everything kind of hazy.” — Pr 1 “Interested in the number of participants in the study … It makes a big difference when you are telling the story of 1 person versus analyzing the data of a province.” — Pr 15 “I might just want to know … if a baby is born at 35 weeks or 36 weeks, how many of them do have breathing problems?” — Pr 11 “The 30 percent [relative risk reduction] would be, I would feel, like ‘Yeah, that’s worth it’. … going from 11 to 8 [absolute risk reduction per 100 deliveries], I don’t know.” — Pr 10 |
| Obstetricians | “I find that patients, when they see a range, they focus on one number. And depending on their context, it could be the lower number or the high number.” — OB 2 “I think relative risk reduction from the patient’s perspective probably is more impactful.” — OB 8 “A number needed to treat, for me, is a very helpful number because I think it’s easy to communicate to patients and it’s easy for me to contextualize what that means … and a number needed to harm.” — OB 7 |
| Pediatricians | “All these 95 percent confidence intervals … too complicated for the general people to understand” — Peds 4 “Doesn’t necessarily need to be, like, written on the algorithm … there’s always uncertainty, and so, that’s just part of medicine.” — Peds 1 “What I’m guessing would be relevant to say is that ‘The risk of your baby having, needing to go to the NICU for respiratory distress would go from X percent to X percent’ … the risk without the intervention, the risk with the intervention.” — Peds 9 “Absolute risks are probably the most useful … it’s like, ‘This is a real possibility’.” — Peds 1 |
| Information format: visual | |
| Pregnant participants | “I like to see, like, a visual representation … to see ‘What are the possibilities?’” — Pr 17 “A flow chart, easy … ‘I’m in this pathway. I belong in this category.’ … ‘Okay what are the important points to know when being in that category?’” — Pr 6 “Something I could take away with me, something I could scribble on, whatever, write some notes on, write some questions on, and then bring that back with me.” — Pr 2 “Access to as much information as I wanted in the form of references, and I’d probably dive deep if I was concerned or not so deep if I wasn’t concerned.” — Pr 4 |
| Obstetricians | [Describing a visual tool with icons and colors] “Visual tools like that are really good because you can talk, talk, talk, but, you know, it’s just another way of presenting the information.” — OB 1 “Give a patient information in a way that lays it out in easy-to-understand ways … uses plain language and is something that you could sort of go through with the patient.” — OB 6 |
| Pediatricians | “Endorsed resources that if they want to take a little bit more on and read, they can.” — Peds 8 |
Note: OB = obstetricians, NICU = neonatal intensive care unit, Peds = pediatricians, Pr = pregnant.