Table 1.
Sociodemographic characteristics
| Characteristic | Caregivers (N = 37) |
All patients (N = 39) |
Lowest (n = 9) |
Second Lowest (n = 10) |
Third Lowest (n = 10) |
Highest (n = 10) |
P-valuea |
|---|---|---|---|---|---|---|---|
| Age, y | n = 35/37 | n = 38/39 | n = 9/10 | 0.0739 | |||
| Mean (SD) | 46.8 (12.5) | 20.2 (8.4) | 24.7 (5.8) | 19.1 (7.1) | 22.5 (11.0) | 15.4 (6.9) | |
| Median | 45.8 | 19.1 | 22.8 | 19.1 | 23.1 | 14.2 | |
| Range (min, max) | (24.1–67.6) | (6.4–42.6) | (17.0–33.2) | (6.4–30.0) | (7.9–42.6) | (7.0–29.8) | |
| Gender, n (%) | 0.4626 | ||||||
| Male | 11 (29.7%) | 24 (61.5%) | 4 (44.4%) | 8 (80.0%) | 6 (60.0%) | 6 (60.0%) | |
| Female | 26 (70.3%) | 15 (38.5%) | 5 (55.6%) | 2 (20.0%) | 4 (40.0%) | 4 (40.0%) | |
| With whom patient lives, n (%) | |||||||
| Parents/Siblings | NA | 33 (84.6%) | 8 (88.9%) | 9 (90.0%) | 6 (60.0%) | 10 (100%) | 0.0222 |
| Spouse/Partner | NA | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | |
| Other family member | NA | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | |
| Alone | NA | 2 (5.1%) | 1 (11.1%) | 1 (10.0%) | 0 (0.0%) | 0 (0.0%) | |
| Other | NA | 4 (10.3%) | 0 (0.0%) | 0 (0.0%) | 4 (40.0%) | 0 (0.0%) | |
| Relationship to the patient, n (%) | |||||||
| Parent | 33 (89.2%) | NA | |||||
| Grandparent | 0 (0.0%) | NA | |||||
| Other relative | 1 (2.7%) | NA | |||||
| Professional caregiver | 1 (2.7%) | NA | |||||
| Other | 2 (5.4%) | NA | |||||
| Caregiver lives with patient, n (%) | |||||||
| Yes | 31 (83.8%) | NA | |||||
| No | 6 (16.2%) | NA | |||||
| Numbers of hours per week spent with patient | n = 6/37 | ||||||
| Mean (SD) | 16.0 (16.7) | NA | |||||
| Median | 11.0 | NA | |||||
| Range (min, max) | (1.0–36.0) | NA | |||||
| Ethnic background, n (%) | 0.4810 | ||||||
| Hispanic or Latino | 4 (10.8%) | 6 (15.4%) | 2 (22.2%) | 2 (20.0%) | 0 (0.0%) | 2 (20.0%) | |
| Not Hispanic or Latino | 33 (89.2%) | 33 (84.6%) | 7 (77.8%) | 8 (80.0%) | 10 (100%) | 8 (80.0%) | |
| Racial background, n (%) | n = 38/39 | n = 9/10 | 0.5207 | ||||
| White | 33 (89.2%) | 35 (89.7%) | 8 (88.9%) | 9 (90.0%) | 9 (90.0%) | 9 (90.0%) | |
| Black or African American | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | |
| Asian | 3 (8.1%) | 2 (5.1%) | 0 (0.0%) | 0 (0.0%) | 1 (10.0%) | 1 (10.0%) | |
| Native Hawaiian or other Pacific Islander | 1 (2.7%) | 1 (2.6%) | 1 (11.1%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | |
| Employment status, n (%) | 0.4198 | ||||||
| Employed, full-time or part-time | 28 (75.7%) | 4 (10.3%) | 3 (33.3%) | 1 (10.0%) | 0 (0.0%) | 0 (0.0%) | |
| Homemaker | 4 (10.8%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | |
| Student | 0 (0.0%) | 19 (48.7%) | 2 (22.2%) | 6 (60.0%) | 4 (40.0%) | 7 (70.0%) | |
| Unemployed | 0 (0.0%) | 4 (10.3%) | 1 (11.1%) | 0 (0.0%) | 2 (20.0%) | 1 (10.0%) | |
| Retired | 4 (10.8%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | |
| Disabled | 1 (2.7%) | 12 (30.8%) | 3 (33.3%) | 3 (30.0%) | 4 (40.0%) | 2 (20.0%) | |
| Highest educational level, n (%)b | 0.1213 | ||||||
| Elementary/primary school | 0 (0.0%) | 14 (35.9%) | 0 (0.0%) | 3 (30.0%) | 5 (50.0%) | 6 (60.0%) | |
| Secondary/high school | 7 (18.9%) | 13 (33.3%) | 2 (22.2%) | 5 (50.0%) | 3 (30.0%) | 3 (30.0%) | |
| Some college | 9 (24.3%) | 9 (23.1%) | 5 (55.6%) | 2 (20.0%) | 1 (10.0%) | 1 (10.0%) | |
| College degree | 7 (18.9%) | 2 (5.1%) | 1 (11.1%) | 0 (0.0%) | 1 (10.0%) | 0 (0.0%) | |
| Some graduate school | 4 (10.8%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | |
| Postgraduate degree | 7 (18.9%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | |
| Technical or vocational degree | 3 (8.1%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | |
| Other | 0 (0.0%) | 1 (2.6%) | 1 (11.1%) | 0 (0.0%) | 0 (0.0%) | 0 (0.0%) | |
| Educational achievement limited by PKAN, n (%) | n = 38/39 | n = 9/10 | 0.1871 | ||||
| Yes | NA | 30 (76.9%) | 5 (55.6%) | 8 (80.0%) | 7 (70.0%) | 10 (100%) | |
| No | NA | 8 (20.5%) | 4 (44.4%) | 2 (20.0%) | 2 (20.0%) | 0 (0.0%) | |
| Change in employment status due to caregiving, n (%)c | 0.0128 | ||||||
| Yes | 21 (56.8%) | NA | 5 (71.4%) | 9 (90.0%) | 2 (20.0%) | 5 (50.0%) | |
| No | 16 (43.2%) | NA | 2 (28.6%) | 1 (10.0%) | 8 (80.0%) | 5 (50.0%) | |
aComparisons between quartile groups based on F tests for continuous data and chi-square tests for categorical data; bResponses are not mutually exclusive; cEmployment status change for caregivers is shown by PKAN severity of impairment patient quartile groups
NA, not applicable; PKAN, pantothenate kinase-associated neurodegeneration; SD, standard deviation