Table 1 Patient characteristics: children with pHLHa reported for by caregivers, n = 20
Characteristic | |
|---|---|
Sex, n (%) | |
Female | 8 (40) |
Male | 12 (60) |
Country of residence, n (%) | |
UK | 4 (20) |
USA | 16 (80) |
Ethnic background, n (%) | |
Asian | 1 (5) |
Black African | 1 (5) |
Hispanic or Latino | 1 (5) |
Mixed | 2 (10) |
White | 13 (65) |
Other | 2 (10) |
Surviving children | |
Overall, n (%) | 17 (85) |
Mean age, years (range) | 12.75 (5.2–31.05) |
Mean time since diagnosis, years (range) | 7.8 (0.6–11.6) |
Deceased children, n (%) | |
Overall | 3 (15) |
Death due to HLH or treatment | 3 (15) |
Number of siblings (range) | |
Overall number of siblings | 0–6 |
Number diagnosed with HLH | 0–2 |
Number of surviving siblings diagnosed with HLH | 0–1 |
Number of deceased siblings diagnosed with HLH | 0–1 |
Mean age when symptoms first noticed by parents, years (range) | 3.95 (0–18) |
Mean age at HLH diagnosis, years (range) | 6.1 (0–23) |
Mean time from first symptoms to confirmed diagnosis, months (range) | 25.9 (0–258) |
Ever on a waiting list for a HSCTb, n (%) | |
No | 5 (25) |
Yes (once) | 12 (60) |
Yes (more than once) | 1 (5) |
Yes (number not stated) | 2 (10) |
Ever had a HSCTb, n (%) | |
No | 2 (10) |
Yes, once | 14 (70) |
Yes, more than once | 2 (10) |
Yes, number not stated | 2 (10) |
Treatments received for HLH, n (%) | |
Corticosteroids | 19 (95) |
Chemotherapy | 19 (95) |
Immunotherapy | 18 (90) |
HSCTb | 18 (90) |
Other | 19 (95) |