Fig. 1

Survey sharing strategy and responses. Surveys addressing patients/families (A) and clinicians/academics (B) were shared through email lists and online groups as indicated. For one question, initially, not all responses were usable. Thus, in addition to 29 initially viable responses from patients and 11 from clinicians/academics, more usable responses were collected through contacting individuals who provided their email contacts. A total of 34 additional viable responses were collected from patients/families (63 total), and 6 additional viable were received from clinicians/academics (17 total)