Understanding the life experience of Barth syndrome from the perspective of adults: a qualitative one-on-one interview study

Table 1 Participant self-reported demographic and health information

Characteristic	Total (N = 7) n/N^a
Current age/Age at diagnosis
Mean (SD)	51.3 (7.1)/42.4 (8.3)
Range	37.2–58.6/33.0–54.0
Age at onset of Barth Syndrome symptoms
Under 6 years old	5/7
18 years or older	1/7
Unknown	1/7
Living situation
Living with family or friends	5/7
Living alone	1/7
Living with a caregiver or in a caregiving facility	1/7
Work status^b;c
Working full-time	2/7
Working part-time	2/7
On disability	3/7
Unemployed	1/7
Other (Volunteer)	1/7
Education level
High school diploma (or GED) or less	5/7
College or university degree	1/7
Post-graduate degree	1/7

^aUnless otherwise noted
^bCounts not mutually exclusive
^cOccupations reported by participants included office work, food service, volunteer work, and manual labor

ISSN: 1750-1172