Table 1.
Characteristics of Children and Adolescents with Cancer, Nephrotic Syndrome, or Sickle Cell Disease
| Cancer (N = 96) | Nephrotic Syndrome (N = 127) | Sickle Cell Disease (N = 121) | |
|---|---|---|---|
| Characteristics | N (%) | N (%) | N (%) | 
| Gender | |||
| Female | 44 (46%) | 44 (35%) | 68 (56%) | 
| Male | 52 (54%) | 83 (65%) | 53 (44%) | 
| Age (years) | |||
| mean (SD) | 13.09 (2.96) | 12.31 (2.77) | 12.50 (3.05) | 
| Race | |||
| Non-white | 48 (50%) | 61 (48%) | 121 (100%) | 
| White | 48 (50%) | 66 (52%) | 0 (0%) | 
| Hispanic | |||
| Yes | 19 (20%) | 10 (8%) | 3 (3%) | 
| Comorbid Conditions | |||
| 0 | 70 (73%) | 86 (68%) | 53 (44%) | 
| 1+ | 22 (23%) | 41 (32%) | 36 (30%) | 
| Maternal Education | |||
| High school or less | 33 (34%) | 73 (58%) | 53 (44%) | 
| Some college or greater | 63 (66%) | 54 (43%) | 68 (56%) | 
| Completion rates* | |||
| T1 (baseline) | 96 (100%) | --- | 121 (100%) | 
| T2 (event) | 84 (88%) | 127 (100%) | 55 (45%) | 
| T3 (recovery) | 86 (90%) | 112 (88%) | 38 (31%) | 
| T4 (follow-up) | --- | 90 (71%) | 80 (66%) | 
Note:
For each disease, a separate study design was used to assess responsiveness of the PROMIS Pediatric measures. Nephrotic syndrome did not have a T1 assessment when the child was in remission before active disease state (at study enrollment). Cancer did not have a final T4 assessment point after the recovery period. Sickle Cell disease enrolled children when their symptoms were well controlled and followed them for a possible pain exacerbation (requiring hospitalization) over the course of 18 months; thus, only a subset of children with sickle cell disease provided T2 and T3 data.