Table 2.

Participant Characteristics (N=14)

Characteristic		N (%)
Gender
	Male	4 (29)
	Female	10 (71)
Highest Education Level
	High School	3 (21)
	Undergraduate	1 (7)
	Graduate	5 (36)
	Post-Graduate	5 (36)
Employment Status
	Part-Time	1 (7)
	Full-Time	8 (57)
	Unemployed	1 (7)
	Retired	4 (29)
Household Gross Annual Income
	$25,000 – $50,000	1 (7)
	$50,000 – $75,000	5 (36)
	$75,000   $100,000	3 (21)
	$100,000 +	5 (36)
Site(s) of Patient’s ECD Involvement
	Bone	11 (79)
	Skin	4 (29)
	Brain	10 (71)
	Lungs	3 (21)
	Heart	8 (57)
	Kidney	8 (57)
	Eyes	6 (43)
	Spine	6 (43)
	Other	4 (29)
Percent of Patient’s Informal Care Provided
	0–19%	5 (36)
	20–39%	2 (14)
	40–59%	0 (0)
	60–79%	1 (7)
	80–100%	6 (43)
Patient’s Current ECD Treatment
	Targeted (kinase inhibitor) therapy	8 (57)
	Conventional (chemotherapy, immunosuppression) therapy	2 (14)
	Combined targeted/conventional	1 (7)
	No current therapy	3 (21)