TABLE 2.
Characteristics of children whose parents participated in PRISM‐Impact.
| Characteristic | Children of all participating parents (N = 144) | Children of interviewed participants (N = 43) |
|---|---|---|
| Age at diagnosis, years a | ||
| Mean (SD) | 8.0 (5.5) | 7.9 (5.6) |
| Range | 0–17 | 0–17 |
| Age at PRISM enrollment, years | ||
| Mean (SD) | 9.1 (5.5) | 9.0 (5.7) |
| Range | 0–18 | 1–17 |
| Initial diagnosis, No. (%) | ||
| Sarcoma | 41 (28.5) | 13 (30.2) |
| CNS | 57 (39.6) | 16 (37.2) |
| Leukemia/lymphoma | 21 (14.6) | 4 (9.3) |
| Neuroblastoma | 14 (9.7) | 4 (9.3) |
| Other | 11 (7.6) | 6 (14.0) |
| Number of relapses, No. (%) | ||
| 0 | 63 (43.8) | 19 (44.2) |
| 1 | 65 (45.1) | 19 (44.2) |
| >1 | 16 (18.7) | 5 (11.6) |
| PRISM report recommendations, No. (%) b | ||
| No recommendations | 37 (27.4) | 11 (25.6) |
| Change in therapy | 78 (57.8) | 27 (62.8) |
| Clinically relevant germline finding | 6 (4.4) | 1 (2.3) |
| Change in therapy and change in diagnosis | 3 (2.2) | 0 |
| Change in therapy and clinically relevant germline finding | 11 (7.6) | 4 (9.3) |
| Clinically relevant germline findings, No. (%) b | ||
| Yes | 17 (12.6) | 5 (11.6) |
| No | 118 (87.4) | 38 (88.4) |
Abbreviations: CNS, central nervous system; PRISM, Precision Medicine for Children with Cancer; PRISM‐Impact, the psychosocial substudy running alongside the PRISM study.
a
The age restriction is based on the child’s age at the date of consenting to PRISM, whereas the age summarized in the table is that reported by the parent at baseline. Hence, it is possible to include children aged 18 years at baseline if they had their birthday between PRISM consent and baseline.
b
As listed on the PRISM study report. Only includes reports that had been shared with parents (n = 135) at the time of data analysis.