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Table 3 Delays to diagnosis

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

Issue Example quote
Symptom recognition “Our hematologist was pulling his hair out trying to figure out what was happening, ‘We don’t know what it is’"
Incorrect diagnosis “The first seven days that we were in the hospital, the doctors still didn’t know what was happening, they thought he just had a bad virus”
Transfer between HCPs “I requested for him to be transported to [hospital name] and they did. And still, there was like very—a lot of confusion, not knowing what was going on”
Delays leading to severe progression of HLH “Before he was diagnosed, they ran over 500 tests… I mean, back then, it was even more rare knowing—anybody knowing about this illness … We were so incredibly lucky that his hematologist that we got had just gotten out of his residency and [child with HLH] was very close to dying”
Chance diagnosis “We were lucky because one of the ER doctors had done a thesis on HLH”
  1. ER, emergency room; HCP, healthcare professional; HLH, hemophagocytic lymphohistiocytosis; HSCT, hematopoietic stem cell transplantation
  2. Note that the words in brackets have been added either to preserve anonymity (following removal of possible identifying information) or for clarity and are not part of the original quote