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Table 6 Long-term concerns following treatment

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

Issue highlighted Example quote
Anxiety “Every time she has a sickness, in the back of my head somewhere, HLH is there”
Compromised immune system ‘‘Cause if he got a cold, he’d get it 100 times worse, you know, ‘cause they do, ‘cause their immune system’s not great … [3rd child], I remember he got chickenpox, [child with HLH] caught it. That made him go into hospital, ‘cause they got infected”
Prolonged viral infection and hospitalization “…about a year past, two years past tran [transplant]—she ended up back in the hospital and we were like—just when you’re like, you know, you breathe a little bit and we’re like, oh, how can this happen two years later?”
Other issues “…the chemotherapy had killed his thyroid in his neck. I guess, you have a thyroid in your brain as well, but it totally wiped it out. So, he’s on thyroid medication every day…”
Focus on the positives “So, she is amazing now. So, I mean, she—the more years you put under your belt, the more you relax. So, we didn’t really relax probably—I’d probably say four years, four or five years … She’s now almost off all her meds [medications], it was three years out and she went back to school full-time and, you know, life, sort of, gets back to normal”
  1. 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