Table 1.
Study Characteristics
| Characteristic | Young Adults (N=782) |
Adolescents (N=214) |
P-Value* |
|---|---|---|---|
| Demographics | |||
| Age (years)W, Mean (std) | 21.7 (2.3) | 15.9 (0.8) | <.001 |
| GenderC, N (%) | |||
| Male | 352 (45.0%) | 106 (49.5%) | .240 |
| Female | 430 (55.0%) | 108 (50.5%) | |
| GenotypeC, N (%) | |||
| Non-severe Sickling: SC/S Beta+/S-HPFH | 204 (26.1%) | 65 (30.4%) | .211 |
| Severe Sickling: SS/S Beta 0/SD/SO/SE | 578 (73.9%) | 149 (69.6%) | |
| Insurance type*C, N (%) | |||
| Private | 239 (31.9%) | 64 (30.5%) | .065 |
| Public | 468 (62.5%) | 142 (67.6%) | |
| None | 42 (5.6%) | 4 (1.9%) | |
| Marital Status | |||
| Married or living as married | 29 (4.1%) | 0 (0.0%) | .391 |
| Other | 677 (95.9%) | 35 (100.0%) | |
| Household incomeC, N (%) | |||
| $25,000 or less | 353 (53.0%) | 85 (47.2%) | .169 |
| $25,001+ | 313 (47.0%) | 95 (52.8%) | |
| EducationC, N (%) | |||
| Less than high school graduate | 87 (11.3%) | 194 (94.6%) | <.001 |
| High school graduate or higher | 684 (88.7%) | 11 (5.4%) | |
| Employment*C, N (%) | |||
| Engaged | 209 (28.7%) | 19 (9.3%) | <.001 |
| Unengaged | 520 (71.3%) | 185 (90.7%) | |
| Other Covariates | |||
| Regular blood transfusionsC, N (%) | |||
| Yes | 211 (27.3%) | 40 (19.0%) | .014 |
| No | 563 (72.7%) | 171 (81.0%) | |
| Frequency of very severe pain (past 6 mo)C, N (%) | |||
| Never | 101 (13.0%) | 42 (20.2%) | <.001 |
| Rarely | 163 (21.0%) | 68 (32.7%) | |
| Sometimes | 263 (33.9%) | 69 (33.2%) | |
| Often | 213 (27.4%) | 26 (12.5%) | |
| Always | 36 (4.6%) | 3 (1.4%) | |
| What type of healthcare professional has been providing the majority of care for your sickle cell disease in the past 2 yearsC, N (%) | |||
| Sickle cell specialist or hematologist | 595 (87.4%) | 181 (94.3%) | .039 |
| Primary care or general practice | 41 (6.0%) | 7 (3.6%) | |
| Emergency department | 34 (5.0%) | 4 (2.1%) | |
| I don’t currently receive care for my sickle cell disease | 11 (1.6%) | 0 (0.0%) | |
| Have you ever taken hydroxyureaC, N (%) | |||
| Yes | 529 (74.0%) | 136 (66.0%) | .025 |
| No | 186 (26.0%) | 70 (34.0%) | |
| Clinical Outcomes | |||
| No. of dysfunctional organs*C, N (%) | |||
| 0 | 376 (48.1%) | 149 (69.6%) | <.001 |
| 1 | 260 (33.2%) | 52 (24.3%) | |
| 2+ | 146 (18.7%) | 13 (6.1%) | |
| No. visits in the past year for acute pain/crisisN, N | 665 | 190 | |
| Mean (std) | 5.0 (8.8) | 2.2 (2.6) | <.001 |
| Mental Health | |||
| Depression T-score*W, N | 771 | 209 | |
| Mean (std) | 46.1 (8.1) | 43.7 (7.0) | <.001 |
| Depression treatmentC, N (%) | |||
| Currently receiving treatment | 60 (7.9%) | 16 (7.6%) | .006 |
| Treated in the past but not now | 100 (13.1%) | 11 (5.2%) | |
| Never received treatment | 602 (79.0%) | 183 (87.1%) | |
| Anxiety (Medical Abstraction Form)C, N (%) | |||
| Yes | 96 (19.4%) | 19 (10.8%) | .009 |
| No | 399 (80.6%) | 157 (89.2%) | |
| Functioning | |||
| Sleep Impact T-score*W, N | 772 | 208 | |
| Mean (std) | 50.3 (10.0) | 53.8 (8.7) | <.001 |
| Cognitive Functioning T-score*W, N | 772 | 209 | |
| Mean (std) | 49.2 (9.5) | 47.8 (9.0) | .041 |
| Task Management T-score*W, N | 778 | 210 | |
| Mean (std) | 53.2 (8.2) | 51.7 (8.7) | .024 |
| Reliance on others T-score*W, N | 775 | 210 | |
| Mean (std) | 52.2 (9.9) | 54.7 (8.9) | .002 |
| Barriers to Medical Care | |||
| No. barriers summed 0-12 in the last 12MN, N | 782 | 214 | |
| Mean (std) | 0.6 (1.3) | 0.1 (0.4) | <.001 |
C = Chi-square test; F = Fisher’s Exact test; HPFH = hereditary persistence of fetal hemoglobin; N = negative binomial test; SC = compound heterozygous for hemoglobin S and hemoglobin C; SD = compound heterozygous for hemoglobin S and hemoglobin D; SE = compound heterozygous for hemoglobin S and hemoglobin E; SO = compound heterozygous for hemoglobin S and hemoglobin O; SS = homozygous for hemoglobin S; W = Wilcoxon Rank Sum test.
Participants with both private and public insurance are categorized as ‘private’. ‘Engaged’ employment includes participants who are students and/or employed. ‘Unengaged’ employment includes participants who are unemployed and/or disabled. Dysfunctional organs include: Avascular Necrosis, Chronic kidney disease, Stroke, Pulmonary arterial hypertension, skin ulcers, retinopathy, and Chronic refractory pain. For Depression T-Score: higher scores indicate less desirable outcomes (i.e., more severe depression). For Functioning T-scores (Sleep Impact, Cognitive Functioning, Task Management, Reliance on others): higher scores indicate more desirable outcomes (i.e., better sleep, less reliance on others).
Bold text is used to identify P-values less than 0.05.