Table 1.
The distribution of data points corresponding to five data categories and their Managing Epilepsy Well Common Data Elements in the Insight database
| Data Category | Study Variables | Number of Data Points |
MEW Network Studies | Total Number of Participants |
|||
|---|---|---|---|---|---|---|---|
| WebEase Study |
FOCUS Study (Pilot and RCT studies) |
TIME Study |
HOBSCOTCH Study |
||||
|
Socioeconomic -Demography |
Gender | 430 | |||||
| Male | 39 (26%) | 69 (38%) | 18 (41%) | 18 (31%) | 144 (33%) | ||
| Female | 109 (74%) | 111 (63%) | 26 (59%) | 40 (69%) | 286 (67%) | ||
| Race | 372 | ||||||
| White | 132 (89%) | 140 (78%) | 16 (36%) | - | 288 (77%) | ||
| Black/African- American |
2 (1%) | 22 (12%) | 25 (57%) | - | 49 (13%) | ||
| Asian | 3 (2%) | 0 | 0 | - | 3 (1%) | ||
| American Indian or Alaska Native |
0 | 1 (1%) | 3 (7%) | - | 4 (1%) | ||
| Other* | 11 (8%) | 17 (9%) | 0 | - | 28 (8%) | ||
| Ethnicity | 372 | ||||||
| Hispanic or Latino |
7 (5%) | 9 (5%) | 3 (7%) | - | 19 (5%) | ||
| Not Hispanic or Latino |
141 (95%) | 170 (94%) | 41 (93%) | - | 352 (95%) | ||
| Other | 0 | 1 (1%) | 0 | - | 1 (1%) | ||
| Education | 430 | ||||||
| Never attended school or only attended kindergarten |
0 | 0 | 0 | 0 | 0 | ||
| Grades 1 through 8 (Elementary) |
0 | 1 (1%) | 0 | 0 | 1 (1%) | ||
| Grades 9 through 11 (Some high school) |
1 (1%) | 3 (1%) | 11 (25%) | 0 | 15 (3%) | ||
| Grade 12 or GED (High school graduate) |
19 (13%) | 33 (18%) | 8 (18%) | 27 (47%) | 87 (20%) | ||
| College 1 year to 3 years (Some college or technical school) |
68 (46%) | 61 (34%) | 21 (48%) | 0 | 150 (35%) | ||
| College 4 years or more (College graduate) |
58 (39%) | 75 (42%) | 4 (9%) | 30 (52%) | 167 (39%) | ||
| Other | 2 (1%) | 7 (4%) | 0 | 1 (1%) | 10 (2%) | ||
| Income | 224 | ||||||
| Less than $25K | - | 81 (45%) | 42 (95%) | - | 123 (55%) | ||
| $25,000–$49,999 | - | 16 (9%) | 2 (5%) | - | 18 (8%) | ||
| $50,000 or greater |
- | 7 (4%) | 0 | - | 7 (3%) | ||
| Other | - | 76 (42%) | 0 | - | 76 (34%) | ||
| Employment | 430 | ||||||
| Self-employed | 1 (1%) | 1 (1%) | 0 | 0 | 2 (1%) | ||
| Employed for wages |
76 (51%) | 68 (38%) | 3 (7%) | 21 (36%) | 168 (39%) | ||
| Retired | 3 (2%) | 17 (9%) | 5 (11%) | 0 | 25 (6%) | ||
| Student | 5 (3%) | 6 (3%) | 1 (2%) | 0 | 12 (3%) | ||
| Homemaker | 3 (2%) | 8 (4%) | 4 (9%) | 0 | 15 (3%) | ||
| Do not work/Disability |
4 (3%) | 48 (27%) | 19 (43%) | 0 | 71 (17%) | ||
| Out of work for less than 1 year |
0 | 8 (4%) | 2 (5%) | 0 | 10 (2%) | ||
| Out of work for 1 year or more |
0 | 19 (11%) | 10 (23%) | 37 (64%) | 66 (15%) | ||
| Other | 56 (38%) | 5 (3%) | 0 | 0 | 61 (14%) | ||
|
Relationship
Status |
192 | ||||||
| Married | 69 (47%) | - | 4 (9%) | - | 73 (38%) | ||
| Member of an unmarried couple |
12 (8%) | - | 2 (5%) | - | 14 (7%) | ||
| Never married | 36 (24%) | - | 21 (48%) | - | 57 (30%) | ||
| Divorced | 22 (15%) | - | 14 (32%) | - | 36 (19%) | ||
| Widowed | 3 (2%) | - | 1 (2%) | - | 4 (2%) | ||
| Separated | 1 (1%) | - | 2 (4%) | - | 3 (2%) | ||
| Refused/ Unknown/Other |
5 (3%) | - | 0 | - | 5 (2%) | ||
| Seizure Details | Type of Seizure | 250 | |||||
| Partial Seizure | 65 (44%) | - | 7 (16%) | 49 (85%) | 121 (48%) | ||
| Generalized Seizure |
76 (51%) | - | 25 (57%) | 9 (15%) | 110 (44%) | ||
| Other | 7 (5%) | - | 12 (27%) | 0 | 19 (8%) | ||
|
Health
Measures |
Health Status | 44 | |||||
| Excellent | - | - | 1 (2%) | - | 1 (2%) | ||
| Very good | - | - | 4 (9%) | - | 4 (9%) | ||
| Good | - | - | 9 (20%) | - | 9 (20%) | ||
| Fair | - | - | 20 (46%) | - | 20 (46%) | ||
| Poor | - | - | 7 (16%) | - | 7 (16%) | ||
| Don't know/not sure |
- | - | 3 (7%) | - | 3 (7%) | ||
|
Quality of Life
Measure |
QOLIE-10 | 2182 | |||||
| Average total value (Baseline) |
2.59 | 3.4 | 2.9 | - | 3.0 | ||
|
Depression
Measure |
PHQ-9 | 2626 | |||||
| Average total value (Baseline) |
- | 8.2 | 10.9 | 9.3 | 9.1 | ||
*
Other includes additional or non-standard categories, missing data or results that are not interpretable QOLIE-10: 10-item quality of life measure, lower scores indicate better quality PHQ-9: Patient Health Questionnaire, lower scores indicate less depression