Table 1.

Demographics of Focus Group Participants

Characteristic	Patients N=46(%)	Parents N=41(%)4	Physicians N=23 (%)
Sex
Female	34 (74)	32 (78)	14 (61)
Male	12 (26)	8 (20)	9 (39)
Age Group, y
18–30	18 (39)	1 (2)	2 (9)
31–40	9 (20)	13 (32)	4 (17)
41–50	11 (24)	14 (34)	2 (9)
51–65	4 (9)	11 (27)	10 (43)
>65	2 (4)	1 (2)	3 (13)
Ethnicity
African American	39 (85)	35 (85)	6 (26)
White	0	0	7 (30)
Asian	0	0	6 (26)
Hispanic/Latino	1 (2)	1 (2)	0 (0)
Other	4 (9)	4 (10)	1 (4)
Educational Level
High school or less	3 (7)	3 (7)	0
Some college	17 (37)	20 (49)	0
Bachelor’s degree	9 (20)	4 (10)	0
Master’s degree	13 (28)	9 (22)	0
Graduate school degree	2 (4)	4 (10)	n/a
Health Insurance
Private	15 (33)	21 (51)	n/a
Medicare	19 (41)	5 (12)	n/a
Medicaid	14 (30)	14 (35)	n/a
Military healthcare	0	1 (2)	n/a
No coverage of any type	2 (4)	4 (10)	n/a
Other	3 (7)	0	n/a
Marital Status
Married	11 (24)	22 (54)	n/a
Widowed	1 (2)	2 (5)	n/a
Divorced or separated	4 (9)	7 (17)	n/a
Never married	20 (43)	7 (17)	n/a
Living with partner	7 (15)	1 (2)	n/a
How much do you try to carry your religion over
into all other dealings in your life?
A great deal	20 (43)	19 (48)	n/a
Quite a bit	6 (13)	12 (29)	n/a
Some	4 (9)	4 (9)	n/a
Not at all	6 (13)	0 (0)	n/a
How spiritual would you say you are?
Very spiritual	22 (48)	22 (54)	n/a
Moderately spiritual	12 (26)	14 (34)	n/a
Not spiritual at all	2 (4)	1 (2)	n/a
Are you involved in a SCD support or advocacy
group(s)?
Yes	34 (74)	25 (61)	n/a
No	9 (20)	14 (34)	n/a
Attended US Medical School?
Yes	n/a	n/a	11 (48)
No	n/a	n/a	11 (48)
PI or Investigator2*
Yes	n/a	n/a	16 (70)
No	n/a	n/a	7 (30)

¹Numerical data are presented as number (percentage) of study participants unless otherwise indicated.

^2*Represents physician participants who report previously having been, or currently being, the PI or Investigator of a clinical trial.

³Numbers may appear higher than normal due to participants selecting numerous options.

⁴Missing demographic data for one parent.