Table 2 Patient demographics, measures of complexity, and phenotypic groupings.
Characteristic | Historical cohort N = 91 | Prospective cohort N = 92 | P value |
---|---|---|---|
Female (%) | 48 (52) | 43 (47) | 0.5 |
Male (%) | 43 (47) | 49 (53) | 0.5 |
Mean age at presentation for tertiary investigation in months (range) | 13 (0–187) | 19.8 (0–210) | 0.16 |
Mean interval to genetics assessment in days (range) | 106 (0–902) | 133 (0–825) | 0.34 |
Median number of specialists involved (range) | 5 (2–8) | 5 (2–9) | 0.7 |
Median number of organs involved (range) | 3 (1–7) | 3 (1–9) | 0.2 |
Median number of hospital admissions for investigation per child (range) | 2 (0–11) | 2 (0–8) | 0.2 |
Phenotypic group: multiple congenital malformation | 16 | 32 | 0.005 |
Phenotypic group: neurodevelopmental | 63 | 49 | 0.001 |
Phenotypic group: multisystem disorder | 6 | 8 | 0.55 |
Phenotypic group: high acuity, single system | 6 | 3 | 0.19 |