Table 3 Themes and examples of specific feedback about initial content of guidelines

Creating more explanations for medical concepts

“There was still a bit of medical jargon in there that either needs to be removed, or there should be a definitions and examples page”

“For drugs, [it] would be nice to have definition, examples, side effects ([especially] Hydroxyurea)”

“I would want symptoms, or what do we mean by ‘gallstones’ or ‘discomfort’”

“Also, [we] want more about why SCD causes this or affects this, that these complications happen over years”

Streamlining the format and organization of the information

“Categories need to be better laid out, for example, by age would be better”

“More small sentences and bullet points, not long paragraphs”

“Remove all the ‘if you are XX age’ … and make content only appear in certain sections by age”

“There is too much information that may not be relevant to a person at their [current] age, and they would just want relevant information [filter by their age]”

“Some things were repetitive like vaso-occlusive episode, and there should be a definition for the section, but then just call the episode a ‘pain crisis’”

“Combine depression screening, or at least make [the recommendations] by age, and again, less wording, more bullet points”

Identifying which content was actionable

“Make the verbiage more actionable, for example, if you don’t have a pain action plan – get a pain action plan”

“I can’t tell what is actionable [in these guidelines]”

Using more visual representations of the content

“I would like a vaccine schedule in the content and more pictures”

“We need more pictures”