Characteristics of the cases and 1-year survival are described in Table 1. The number at risk from the date of HLH diagnosis and 1-year mortality frequencies were calculated by age, gender, calendar period and comorbidity.Ī total of 1628 patients were identified (Additional file 2: Fig. As there was no access to serological or genetic tests, the type (acute, chronic, reactivation) of viral illness nor genetic cause could not be ascertained. Where there was overlap of non-infectious comorbidities, patients were classified with a mutually exclusive hierarchy: haematological malignancy, rheumatological disease/inflammatory bowel diseases (IBD), non-haematological malignancy and none recorded. The presence/absence of comorbidities was identified from available HES and NCRD records prior to diagnosis of HLH and up to three months after. Date of diagnosis was the first day of the admission in which HLH was coded. They included patients of all ages admitted to hospital or died between 1 January 2003 and 31 December 2018. Patients diagnosed with HLH were identified using our validated approach. Linked electronic health records from English Hospital Episode Statistics (HES), the National Cancer Registration Dataset (NCRD) and Office for National Statistics (ONS) death certification data were used. Survival was better in those with auto-immune diseases among the young and middle age groups compared to those with an underlying malignancy, whereas in older age groups survival was uniformly poor regardless of the underlying disease process. One-year survival following a diagnosis of HLH varies considerably by age, gender and associated comorbidity. Overall, crude one-year survival was 50% (95% Confidence interval 48–53%) which varied substantially with age (0–4: 61% 5–14: 76% 15–54: 61% > 55: 24% p 55, 27%) such that among those > 55 years, survival was as poor as for patients with haematological malignancy. There were 1628 people with HLH identified. We modelled interactions between demographics and comorbidities and estimated one-year survival by calendar year, age group, gender and comorbidity (haematological malignancy, auto-immune, other malignancy) using Cox regression. We undertook a nationwide study in England of all cases of HLH diagnosed between 20, using linked electronic health data from hospital admissions and death certification. Haemophagocytic lymphohistiocytosis (HLH) is a lethal syndrome of excessive immune activation.
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