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Table 1 Patient characteristics: children with pHLHa reported for by caregivers, n = 20

From: A qualitative investigation into the impact of hemophagocytic lymphohistiocytosis on children and their caregivers

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)
  1. BMT, bone marrow transplant; HLH, hemophagocytic lymphohistiocytosis; UK, United Kingdom; USA, United States of America
  2. aDiagnosis of HLH and need for a BMT used to identify patients with pHLH
  3. bSpecifically a BMT