Pain, depression and anxiety in people with haemophilia from three Nordic countries: Cross-sectional survey data from the MIND study

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  • Katarina Steen Carlsson
  • Bent Winding
  • Jan Astermark
  • Fariba Baghaei
  • Elisabeth Brodin
  • Funding, Eva
  • Margareta Holmström
  • Klaus Österholm
  • Sofia Bergenstråle
  • Emelie Andersson
  • Stefan Lethagen

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.

OriginalsprogEngelsk
TidsskriftHaemophilia
Vol/bind28
Udgave nummer4
Sider (fra-til)557-567
ISSN1351-8216
DOI
StatusUdgivet - 2022

Bibliografisk note

Funding Information:
We thank the survey participants and their treating physicians, and are grateful to the research nurses at participating centres and the Danish Patient Association for administering survey invitations. Support for third‐party writing assistance for this article, provided by Marianne Clemence, DPhil, Costello Medical, UK, was funded by Sobi in accordance with Good Publication Practice (GPP3) guidelines ( http://www.ismpp.org/gpp3 ). This analysis was sponsored by Sobi.

Publisher Copyright:
© 2022 The Authors. Haemophilia published by John Wiley & Sons Ltd.

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