SURVEY RESULTS

  • of all respondents reported feeling depressed in the last year due to their condition
  • of respondents were unsure of who to contact for emotional support
  • of respondents were not given access to psychological support but would have liked this

Bleeding Disorder Patient Experience Survey 2021

The Bleeding Disorder Patient Experience Survey was initiated and funded by Takeda, and developed together with The Haemophilia Society. 

The Bleeding Disorder Patient Experience Survey, conducted between December 2020 and February 2021, provides information on bleeding disorders and variations in care, with the aim of identifying areas in which patients can receive greater support and advocate for change.

The survey includes 96 responses from people with Haemophilia A, Haemophilia B, Von Willebrand Disease and Acquired Haemophilia with data collected in areas including quality of life, involvement in management and care, self-management and the impact of COVID-19.

“Having the right conversations with healthcare professionals is vital to enable an active life"

Kate Burt, Chief Executive of The Haemophilia Society