The ITP Support Association are proud to support Haemnet and the Cinderella Study survey! If you're a woman and have been affected by a #bleedingdisorder, please do get involved and complete this survey. Link https://haemnet.typeform.com/to/uWufTI
The following is the text published by Haemnet highlighting why there is a need for this survey:
An exploration of the lived experience and unmet medical need of women who bleed There is growing recognition that women are overlooked and underserved in terms of research and access to treatment options and services, because the impact of biological differences between men and women has traditionally not been considered in healthcare.
While there are many similarities between men and women, there are also a lot of differences. Women have different risk factors for certain diseases and may also respond differently to various treatments and medications. However, until the 1990s, women were excluded from most clinical trials and as a result, many prescription drugs and treatment protocols in use today have been disproportionately studied on men and not designed to meet women’s needs.
Bleeding disorders are no different. The epidemiology of inherited bleeding disorders in women is not clear due to delays in diagnosis, however in acquired bleeding disorders (such as ITP) they may be diagnosed more promptly than men given female bleeding patterns. Haemnet proposes to review the current care provision from the perspectives of the women living with bleeding disorders through surveys and focus groups. This will be supported by an initial review of the literature with
respect to women who bleed. The focus of these activities will be to better understand ‘What is the lived experience among women who bleed as a result of an inherited or acquired bleeding disorder?’
The Cinderella study will start with a social media-based survey of women who bleed focused on the symptoms and experience of health care services. We will work with the UK haemophilia societies and ITP support group to promote the survey to women. Subsequently, we plan to host six focus groups across England (Birmingham/the Midlands, Leeds/Bradford/Sheffield, Manchester/Liverpool/ the North West, Basingstoke/Oxford, Bristol and the South West, and London) to gather greater detail on the lived experiences of women who bleed.
The aim is to better understand:
- What is my ‘norm’? – there is a question of ‘what is normal’
- Impact on quality of life – what are the holistic impact factors?
- Knowledge in families
- Education in the early years
- Societal and cultural issues.
Outputs from the study will be developed for publication in clinical journals, along with abstracts and posters for use at conferences. The publication plan will be finalised in conjunction with the Steering Committee and other stakeholders, and will include materials to be fed back to those affected individuals who have contributed to the study through social media and patient support groups/organisations.