Table 5 Family impact
From: The parent and family impact of CLN3 disease: an observational survey-based study
Has CLN3 disease had a financial impact on your family (n = 42)? | Yes | 34 (81.0%) |
No | 8 (19.0%) | |
On a scale of 1 to 10 (highest impact), how much impact has CLN3 disease had on your family’s financial situation? mean (SD) | 5.6 (3.0) | |
What percent of your family income would you estimate CLN3-related expenses represent? mean (SD) | 13.0 (17.5) | |
What life decisions have you (the caregiver) made based on your family member’s CLN3 disease (n = 43)? | Work & Career | |
Work fewer hours | 24 (55.8%) | |
Cannot work, left work, lost job, or decided not to work | 16 (37.2%) | |
Influenced type of career | 9 (20.9%) | |
Marriage & Family | ||
Marital strain impacted related to CLN3 disease | 20 (46.5%) | |
Decided not to have more children | 17 (39.5%) | |
Family brought closer by CLN3 disease | 12 (27.9%) | |
CLN3 disease was a factor in divorce/separation | 4 (9.3%) | |