Dunja Dreesens

109 “Nothing is black and white. And then it is nice that the guideline also provides alternatives that meet a certain standard; it prompts you to more discussion on what to do.” 14 “The SDM-recommendation requires more deliberation and demands more of your communication skills.” 13 “I would like to know the evidence base of each item mentioned. If it’s part of the guideline, I would question if it was properly assessed.” 10 “And, there is of course a balance in what makes a guideline practical. You cannot include all the literature, because then it would no longer be a practical guideline.” 15 “If you want you can put everything in a guideline. I don’t believe that’s the way to go.” 5 “Especially for the doctors who are being trained, nurses and physician assistants who are less experienced, have less knowledge, they will need a very clear guideline.” 13 Usefulness of a PDA accompanying a guideline Another option to address SDM in guidelines is paring a specific conditional recommendation with a PDA. A conditional recommendation is used when the underlying evidence is scarce or conflicting, or when more than one relevant treatment options is available. For conditional recommendations, it is known that an individual patient values the uncertainties and trade-offs differently compared to other patients (202). Although most participants perceived the PDA to be beneficial for the patient/parents, but to a lesser degree for themselves. Most of the participants preferred to convey the information mentioned in the PDA in person, out of fear of losing rapport with the patient when looking at a piece of paper or tablet during a consultation. Others believed patients/parents would not want to use PDAs. Some interviewed pediatricians expressed that the PDAs contained useful topics they would normally not address during consultation, and suggested it could be used as a checklist to ensure important topics were covered. Two participants mentioned that patients/parents often do not remember everything mentioned during a consultation and that PDAs are ideal for patients as a reference document to take home, re-read and reflect on what was discussed (see Table 4). Table 4: Illustrative quotes on usefulness of a PDA accompanying the CPG THEME USEFULNESS OF A PDA ACCOMPANYING THE CPG INTERVIEW # ILLUSTRATIVE QUOTE Usefulness of PDAs to patient/parents “If the effects [of the interventions] are the same, then of course the parents can make the decision. And it’s quite neat to have all the pros and cons on paper.” 5 “I must honestly say, based on what I’m seeing right now, it would be nice to hand them [patient/parents] something. If they want to think about it, they can weigh the pros and cons.” 7 “It can indeed be handy to make a decision, because sometimes the practicalities of a treatment decision elude you [as a doctor], but those can be very important to the parents.” 12 “It is easy to have something like that, listing all the points. It won’t make it easier, but it will make it more transparent. We don’t have a lot of those yet, do we?” 13 “You can discuss it and read it again later. And it’s way better than my illegible handwriting.” 14 Chapter 6