Table 2 Respondent demographics and practice characteristics (n = 63)
N (%) | |
|---|---|
Clinician demographics | |
Gender | |
Female | 31 (49.2%) |
Male | 27 (42.9%) |
Non-binary | 1 (1.6%) |
Prefer not to answer or missing | 4 (6.3%) |
Race | |
White | 53 (84.1%) |
Black or African American | 1 (1.6%) |
Asian | 6 (8.4%) |
American Indian or Alaska Native | 0 (0.0%) |
Native Hawaiian or other Pacific Islander | 0 (0.0%) |
Other | 2 (3.2%) |
Missing | 1 (1.6%) |
Ethnicity | |
Hispanic or Latino | 3 (4.8%) |
Not Hispanic or Latino | 56 (88.9%) |
Missing | 4 (6.3%) |
Primary specialty | |
Medical genetics | 18 (28.6%) |
Neuro-oncology | 11 (17.4%) |
Neurology | 10 (15.9%) |
Pediatrics | 5 (7.9%) |
Hematology/oncology or medical oncology | 5 (7.9%) |
Dermatology | 2 (3.2%) |
Neurosurgery | 1 (1.6%) |
Orthopedic surgery | 0 (0.0%) |
Other | 8 (13.7%) |
Missing | 3 (4.8%) |
Years in post-training practice | |
< 5 years | 11 (17.4%) |
5–10 years | 14 (22.2%) |
10–20 years | 21 (33.3%) |
> 20 years | 17 (27.0%) |
Practice characteristics | |
Practice type | |
Academic medical practice | 50 (79.4%) |
Private practice | 5 (7.9%) |
Other | 7 (11.1%) |
Missing | 1 (1.6%) |
Location of primary office | |
Urban | 49 (77.8%) |
Suburban | 12 (19.0%) |
Rural | 1 (1.6%) |
Missing | 1 (1.6%) |
Primary language of patients in practice | |
English | 61 (96.8%) |
Spanish | 2 (3.2%) |
Neurofibromatosis specialization | |
Affiliation with children’s tumor foundation NF clinic network | |
Yes | 50 (79.4%) |
No | 11 (17.4%) |
Unsure | 1 (1.6%) |
Missing | 1 (1.6%) |
Clinician involvement in NF treatment trials | |
Yes | 39 (61.9%) |
No | 23 (36.5%) |
Missing | 1 (1.6%) |
Clinician involvement in NF non-treatment research | |
Yes | 47 (74.6%) |
No | 16 (25.4%) |
Clinicians seeing each patient population | |
Pediatric neurofibromatosis 1 | 55 (87.3%) |
Adult neurofibromatosis 1 | 51 (81.0%) |
Pediatric neurofibromatosis 2 | 48 (76.2%) |
Adult neurofibromatosis 2 | 36 (57.1%) |
Schwannomatosis | 36 (57.1%) |