Article Figures & Tables
Figures
- Figure 1:
Summary of categories in analytic framework. Coded interview data were charted to, then interpreted within, categories.
Tables
Characteristic No. (%) of participants* No. of pregnant participants 20 Age, yr, mean ± SD 34.05 ± 3.33 Gestational age at the time of the interview, wk < 12 0 (0) 12–27 5 (25) > 28 15 (75) Highest level of education Bachelor’s degree or higher 20 (100) Parity 0 15 (75) 1 5 (25) Had previous baby admitted to NICU No or not applicable if parity 0 20 (100) Yes 0 (0) Had previous preterm baby No or not applicable if parity 0 17 (85) Yes 1 (5) Unsure 2 (10) Ever received antenatal corticosteroid treatment before (in current or previous pregnancy) No or not applicable if parity 0 18 (90) Yes 0 (0) Unsure 2 (10) Also identifies as an obstetrical care provider (e.g., physician, midwife or nurse) Yes 2 (10) No 18 (90) No. of physician participants 20 Age, yr, mean ± SD 42.63 ± 9.08 Discipline Obstetrician 10 (50) Pediatrician 10 (50) Gender Male 6 (30) Female 14 (70) Years in practice Currently in fellowship training 1 (5) < 5-year postcompletion of training 8 (40) 5–10 years postcompletion of training 2 (10) > 10 years postcompletion of training 9 (45) Note: NICU = neonatal intensive care unit.
↵* Unless indicated otherwise. Denominators are the total number of participants by type (i.e., pregnant participants or physician participants).
Participant group Quote Pregnant participants “I’d have more questions, more about the breathing problems … what that means, how long the baby would need to be in some kind of care unit. Can I take the baby home, or does it have to stay in hospital for a period of time? What’s the average or usual period of time … how long the period is of these concerns?” — Pr 2
“At first, low blood sugar does not sound scary. But … I’d need more clarification on what does that mean for a newborn?” — Pr 14
“[Hearing about neurodevelopmental outcomes] may or may not change the decision, but at least having, knowing that you made a decision based with as much information as you could possibly have.” — Pr 17
“[Patients] go home and do their own research and then come up with this, then they might want to hear it from the doctor first … rather than looking up something on Google and saying that ‘Oh, now my baby is gonna have, like, learning disability from getting the steroids,’ where you’re misinterpreting the information.” — Pr 20Obstetricians “I talk about how the benefits would be decreased respiratory distress, decrease in intraventricular hemorrhage, and decrease in needing ventilation, and a decrease in NEC … over 34 weeks, there probably is a higher risk of hypoglycemia” — OB 7
“RDS and requiring oxygen or even CPAP or intubation … and time spent in NICU.” — OB 10
“Low blood sugar, like, that doesn’t really mean as much to [parents] as, like, oh, a small head or … lower test scores. … I think any evidence that there could be harm is concerning to a degree.” — OB 6
“I’m trying not to place too much emphasis on neurodevelopmental problems because it’s very fuzzy” — OB 5Pediatricians “Hypoglycemia is bad. And that may be a risk for, that may be part of the long-term risks for the developing brain … If you monitor well, it should be preventable, minimized for the most part. … the neonatal or the perinatal brain is very vulnerable to that kind of insult.” — Peds 9
“There is absolutely nothing that proves [association of hypoglycemia and long-term neurodevelopmental outcome]. The only thing that is proven is an association between persistent, symptomatic, severe hypoglycemia and long-term outcome.” — Peds 7
“Long-term neurodevelopmental outcomes are … a very challenging thing to study.” — Peds 1
“We have the same dilemma with postnatal corticosteroids, and we bring it up all the time. It’s out there. It’s in the literature. Someone will Google and find it. And we’ve, in our practice in the NICU, we’ve always been completely transparent. And I think parents understand the — they probably feel more reassured that we talk about it.” — Peds 9Note: CPAP = continuous positive airway pressure, NEC = necrotizing enterocolitis, NICU = neonatal intensive care unit, OB = obstetrician, Peds = pediatrician, Pr = pregnant, RDS = respiratory distress syndrome.
Participant group Quote Pregnant participants “Given that we don’t know the long-term risks of antenatal steroids, and that this is later on where the benefits aren’t as clear, it becomes, I think, more of an individual choice into what is important to you. And so, it feels like something that I would be better suited to decide … with the doctor’s guidance and help.” — Pr 1
“I would prefer that they make the decision and counsel me through it … because I think it’s, it’s still a lot of information to parse.” — Pr 11Obstetricians “Women are often more invested in the well-being of their infants than they are in their own well-being, so … I think they’d want to be part of the decision-making.” — OB 3 Pediatricians “I think especially at this gestation, families would want to be involved because it’s kind of, it’s less of a clear-cut area … it’s more a grey zone.” — Peds 6
“To put that onto a mom who’s staring down delivering a baby early and not knowing what that’s all going to mean, and so on — my guess is, honestly, most people put their faith in you [the doctor] to help make decisions.” — Peds 5Note: OB = obstetricians, Peds = pediatricians, Pr = pregnant.
Theme and participant group Quote Obstetrician counselling Obstetricians “To 34 and 6 [weeks’ gestation], I generally recommend steroids if I think that the patient is at high risk of delivering within 7 days.” — OB 7
“It’s in those cases [at 34 + 0 to 34 + 6 weeks’ gestation] that I would typically speak to MFM — just a phone call and ask their opinion. And I get varying opinions. It’s not consistent.” — OB 8
After 35 [weeks’ gestation], I wouldn’t necessarily even bring it up — unless the patient perhaps asked about it. […] After 36 weeks, I wouldn’t even bring it up.” — OB 6
[For 35 + 0 to 35 + 6 weeks’ gestation] “That’s my grey zone.” — OB 4Pediatricians “I think it’s variable.” — Peds 8
“I certainly do not think there’s any consensus amongst them, so it’s very operator dependent, from what my experience is in coming and meeting these parents.” — Peds 6Balance of harms and benefits Pregnant participants “The things that are mentioned seem very small and … relatively insignificant in comparison to the risk of a respiratory problem.” — Pr 17
“The neurodevelopment … that the baby’s brain is still developing, and those neural paths and everything is still developing … those would be the kind of risks that I’d be most concerned about.” — Pr 5
“I’m not sure. I really need some help to understand, long-term, which one is, which problem is worse, which one is harder treat … I’m unable to determine, you know, assign a greater weight to either problem.” — Pr 14Obstetricians “Our Canadian organization and a lot of people in the world feel that the benefits outweigh the risks.” — OB 5
“I don’t think that there is a clear, obvious thing, where I say, ‘This is really bad, and this is the worse outcome you should be worried about.’ I think that the biggest risk is something that only the patient and her or his support network can understand, right?” — OB 7Pediatricians “If this was a child that was otherwise going to have a totally normal respiratory course, we gave the antenatal corticosteroid just because that’s what we now do … they end up needing a nursery stay for hypoglycemia. That seems like morbidity, to me, in a child that otherwise … may not have happened for.” — Peds 1 Utility of decision support tool Pregnant participants “I could go away, read it, talk it over with my husband … cover enough of the considerations that I wouldn’t feel like I need to go down the rabbit hole of going through the Internet, finding information that I may or may not trust.” — Pr 2 Obstetricians “What would be really helpful is something more geared towards physicians about how to understand the risks and benefits … that would be really helpful for me in order to have a conversation where I felt a bit more confident in being able to make a recommendation or being able to present all the data … if somebody wanted something to read about or to think about, then you could give it to them. They could read it on their own with their partner, with their family, and then come back to you with other questions … There may be two opportunities. One is a way to provide the information to clinicians.” — OB 7 Pediatricians “We kind of take for granted that, for us, the routine, the mundane, is all new to them, and it’s always anxiety-inducing. We know what happens when we’re anxious. Things get shut down. Information isn’t fully processed, but the tools sometimes, it’s something concrete that they reference back to.” — Peds 8 Note: MFM = maternal–fetal medicine, OB = obstetricians, Peds = pediatricians, Pr = pregnant.
- Table 5:
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 10Obstetricians “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 7Pediatricians “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 1Information 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 4Obstetricians [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 6Pediatricians “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.
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