AbstractBackgroundEvidence regarding health‐related quality of life (HRQoL) in patients with steroid‐refractory acute graft‐versus‐host disease (SR‐aGvHD) is lacking. Evaluating HRQoL was a secondary objective of the HOVON 113 MSC trial. Here we describe the outcomes of the EQ‐5D‐5L, EORTC QLQ‐C30, and FACT‐BMT for all adult patients who completed these questionnaires at baseline (i.e., before the start of treatment; n = 26).MethodsDescriptive statistics were used to describe baseline patient and disease characteristics, EQ‐5D dimension scores and values, EQ VAS scores, EORTC QLQ‐C30 scale/item and summary scores, and FACT‐BMT subscale and total scores.ResultsThe mean EQ‐5D value was 0.36. In total, 96% of the patients reported problems with usual activities, 92% with pain/discomfort, 84% with mobility, 80% with self‐care, and 72% with anxiety/depression. The mean EORTC QLQ‐C30 summary score was 43.50. Mean scale/item scores ranged from 21.79 to 60.00 for functioning scales, from 39.74 to 75.21 for symptom scales, and from 5.33 to 91.67 for single items. The mean FACT‐BMT total score was 75.31. Mean subscale scores ranged from 10.09 for physical well‐being to 23.94 for social/family well‐being.ConclusionOur study showed that HRQoL in patients with SR‐aGvHD is poor. Improving HRQoL and symptom management in these patients should be a top priority.