Table 1.
Sample characteristics (n = 66).
| n | ||
|---|---|---|
| Age (years), mean (SD) | 15.74 (2.02) | 66 |
| Age at diagnosis (years), | 13.20 (3.91) | 60 |
| mean (SD) | ||
| Disease duration (years), | 2.27 (2.25 | 60 |
| mean (SD) | ||
| Age at menarche (years), | 11.61 (1.13) | 38 |
| mean (SD) | ||
| Gender | ||
| Male (%) | 33 | 22 |
| Female (%) | 67 | 44 |
| Race/ethnicitya | ||
| Hispanic or Latino (%) | 6 | 4 |
| Middle Eastern (%) | 6 | 4 |
| South Asian (%) | 5 | 3 |
| Other Asian (%) | 5 | 3 |
| Black or African | 9 | 6 |
| American (%) | ||
| White (%) | 53 | 35 |
| Don’t know (%) | 2 | 1 |
| Missing (%) | 3 | 2 |
| Mother’s education | ||
| Less than 12 years of | 9 | 6 |
| education (%) | ||
| High school | 26 | 17 |
| diploma/GED (%) | ||
| Associate’s degree (%) | 15 | 10 |
| Technical degree (%) | 8 | 5 |
| Bachelor’s degree (%) | 18 | 12 |
| Post graduate education | 20 | 13 |
| (masters, doctorate; %) | ||
| Missing (%) | 5 | 3 |
| Father’s education | ||
| Less than 12 years of | 11 | 7 |
| education (%) | ||
| High school | 35 | 23 |
| diploma/GED (%) | ||
| Associate’s degree (%) | 8 | 5 |
| Technical degree (%) | 9 | 6 |
| Bachelor’s degree (%) | 17 | 11 |
| Post graduate education | 17 | 11 |
| (masters, doctorate; %) | ||
| Missing (%) | 5 | 3 |
| Medication type | ||
| Injectable | 68% | 45 |
| Avonex or Avonex pre- filled syringe (interferon beta1a—intramuscular) |
11 | |
| Copaxone glatiramer acetate) |
24 | |
| Plegridy (peginterferon beta-1a) |
3 | |
| Rebif (interferon beta1b— subcutaneous) |
7 | |
| Oral | 30% | 20 |
| Gilenya (fingolimod) | 4 | |
| Tecfidera (BG-12 or | 14 | |
| dimethyl fumarate) | ||
| Terifluonomide | 2 | |
| Missing | 2% | 1 |
| Time on DMT (years) | ||
| Mean (SD) | 1.97 (1.86) | 61 |
| Range | 0.35–9.46 | |
| No. of DMTs in past 12 months | ||
| 1 | 66% | 40 |
| 2 | 28% | 17 |
| 3 | 5% | 3 |
| 4 | 2% | 1 |
| Site | ||
| Toronto—The Hospital for Sick Children |
33% | 22 |
| Children’s Hospital of Philadelphia |
5% | 3 |
| Children’s Hospital of Pittsburgh |
9% | 6 |
| Boston Children’s Hospital |
11% | 7 |
| St Louis Children’s Hospital |
2% | 1 |
| University of Alabama at Birmingham |
11% | 7 |
| Mayo Clinic | 2% | 1 |
| University of Colorado Denver |
6% | 4 |
| University of California at San Francisco |
8% | 5 |
| Texas Children’s Hospital | 9% | 6 |
| Cleveland Clinic | 3% | 2 |
| Alberta Children’s Hospital |
3% | 2 |
| Method of survey administration |
||
| Using paper and pencil | 21% | 14 |
| Using a computer | 67% | 44 |
| Missing | 12% | 8 |
| Help with questionnaire | ||
| No help | 76% | 50 |
| Help from a parent | 15% | 10 |
| Help from study personnel | 9% | 6 |
SD: standard deviation; DMT: disease-modifying therapy.
a
Participants could indicate more than one race/ethnicity or not indicate any. We had data on 58 of the 66 respondents, of whom 2 were coded as “missing.”