Table 1 Participant characteristics
Characteristic | n | % |
|---|---|---|
Age in Years– Mean (SD) | 41.4 | (14.3) |
Gendera | ||
Woman | 90 | (66%) |
Man | 45 | (33%) |
Non-binary/third gender | 1 | (1%) |
Raceb | ||
American Indian or Alaska Native | 2 | 1% |
Asian | 8 | 6% |
Black or African American | 7 | 5% |
Native Hawaiian or Pacific Islander | 1 | 1% |
White | 127 | 91% |
Hispanic, Latino, or Spanish Ethnicity | 14 | 10% |
Language Spoken at Home | ||
English | 129 | 93% |
Spanish | 4 | 3% |
Other | 6 | 4% |
Education | ||
Some High School | 5 | 4% |
High School or Equivalent | 11 | 8% |
Some College | 22 | 16% |
College Degree | 57 | 41% |
Graduate/Professional Degree | 44 | 32% |
Household Incomec | ||
$24,999 or less | 7 | 5% |
$25,000 - $49,999 | 22 | 16% |
$50,000 - $74,999 | 20 | 15% |
$75,000 - $99,999 | 21 | 15% |
$100,000 or greater | 44 | 32% |
Relationship Status | ||
Married or Living as Married | 65 | 47% |
Never Married | 51 | 37% |
Divorced/Separated | 18 | 13% |
Widowed | 4 | 3% |
Residential Statusd | ||
Metropolitan | 92 | 90% |
Micropolitan | 5 | 5% |
Small Town/Rural | 5 | 5% |
Distance from Vascular Anomaly Specialist (median, Interquartile Range) | 20 miles | (8.8, 151) |
Have a primary care doctor | 115 | 83% |
Have a VA specialist or team of specialists | 69 | 50% |
Diagnosise | ||
PIK3CA-Related Overgrowth Spectrum | 107 | 78% |
CLOVES Syndrome | 13 | 9% |
Fibro-Adipose Vascular Anomaly | 11 | 8% |
Klippel-Trenaunay Syndrome | 76 | 55% |
Gorham Stout Disease | 2 | 1% |
Generalized Lymphangiomatosis | 5 | 4% |
Central Conducting Lymphatic Anomaly | 2 | 1% |
PHACE Syndrome | 2 | 1% |
Tufted Angioma | 1 | < 1% |
Parkes Weber | 2 | 1% |
Other | 4 | 3% |
Not Diagnosed with Syndrome | 14 | 10% |