This is a nationwide patient survey, being conducted on behalf of a pharmaceutical company, that is looking to gain a true understanding of the patient experience and will help inform improvements in care for patients with bleeding disorders today and in the future. People living with bleeding disorders across the country are invited to complete this survey to share their experiences across burden of illness, treatment, lifestyle and personal goals.
The survey will ask questions about your bleeding disorder and access to care, as well as the impact of COVID-19. The data gathered will enable us to identify where patients feel their haemophilia care has changed for the better, whilst also highlighting their priority areas for improvement. The findings will be published and disseminated at national clinical and patient advocacy conferences and potentially via other channels.
This has been developed in partnership with the Haemophilia Society and has been commissioned by a pharmaceutical company. The research will comply with UK Data Protection law and with the British Healthcare Business Intelligence Association's Legal & Ethical Guidelines and ABPI code.
By completing this questionnaire, you are giving your consent for the information you provide to be used for the purposes detailed above.
Who should complete the questionnaire?
Please complete this questionnaire if you have a diagnosis of:
- Haemophilia A
- Haemophilia B
- Von Willebrand Disease
- Acquired haemophilia
The questions should be answered by the person who is living with the bleeding disorder.
If you are filling in the questionnaire on behalf of this person, for example a parent filling in on behalf of their child, please try to answer it from their point of view, rather than your own.
Completing the questionnaire
For each question please select the box that is closest to your views. For some questions you will be instructed that you may select more than one box.
Sometimes you will find the box you have selected hides other questions; this ensures you will miss out questions that do not apply to you.
If you don’t know the answer to a question, in most instances you may leave it blank and move on to the next.
Don’t worry if you make a mistake; simply select the correct box.
About Quality Health
Quality Health (www.quality-health.co.uk/) is a specialist health and social care survey organisation working with public, private and voluntary sector organisations to understand and improve patients' experiences of their care and treatment.
Your responses are completely confidential and anonymous.
Quality Health are subject to strict obligations regarding the security and confidentiality of your information and will not use your details for any other purpose unless you give us explicit permission to do so. Information from your responses will not be released unless required by law or where there is a clear overriding public interest. Your responses will be grouped with other respondents so that we can produce an overall set of data which will highlight the key issues.
Quality Health is registered with the Information Commissioner’s Office (ico.org.uk) and this survey is being undertaken in line with all relevant requirements of the Data Protection Act 2018 and the General Data Protection Regulation (GDPR).
No personal information, or individual responses, will be passed on to any funding companies - only aggregated survey data on overall results.
You can withdraw the information you give in this questionnaire upon request – up to the point at which personal details are removed. If you would like to discuss deletion of your data, please contact the survey helpline.
We will not name the pharmaceutical company until the end of the questionnaire just in case knowing this biases any of your responses. If you object to the identity of the pharmaceutical company, or no longer wish to participate in the survey, the data collected from the questionnaire will be deleted.
If you have any questions or concerns about your current medical condition or any side-effects you may be experiencing from any treatment you are receiving, you should speak to your doctor.
If you have any queries about filling in the questionnaire, please call the FREEPHONE helpline number on 0800 783 1775 or by email at info@quality-health.co.uk