Steen Carlsson, Katarina, Winding, Bent, Astermark, Jan, Baghaei, Fariba, Brodin, Elisabeth, Funding, Eva, Holmström, Margareta, Österholm, Klaus, Bergenstråle, Sofia, Andersson, Emelie, and Lethagen, Stefan
Introduction: People with haemophilia (PwH) may experience symptoms of haemophilia‐related pain, depression or anxiety, which can negatively impact health‐related quality of life. Aim: To obtain the perspective of PwH and treaters from Sweden, Finland and Denmark on the management of haemophilia‐related pain, depression and anxiety using cross‐sectional survey data from the MIND study (NCT03276130). Methods: PwH or their caregivers completed a survey about experiences of pain, depression and anxiety related to haemophilia, and the standard EQ‑5D‐5L instrument. Five investigators at haemophilia treatment centres (HTC) were sent a complementary survey containing questions about the management of pain and depression/anxiety. Results: There were 343 PwH (mild: 103; moderate: 53; severe: 180; seven lacking severity information) and 71 caregiver responses. Experience of pain in the last 6 months was reported by 50% of PwH respondents and 46% of caregiver respondents. Anxiety/depression was reported by 28% of PwH respondents. Reporting of pain and anxiety/depression was associated with disease severity. Whilst 62% of PwH who had experienced pain at any time point (n = 242) felt this was adequately addressed and treated at their HTC, only 24% of those who had experienced depression/anxiety (n = 127) felt this was adequately addressed. Disease severity was negatively associated with EQ‐5D‐5L utility value (p <.001). In the HTC survey, 4/5 and 2/5 agreed that pain and depression/anxiety, respectively, are adequately addressed. Conclusions: Pain and depression/anxiety occur more frequently with increasing haemophilia severity, with negative impacts on health‐related quality of life. PwH with depression/anxiety or unaddressed pain could benefit from improved management strategies. [ABSTRACT FROM AUTHOR]