Have you ever had a question about the diagnosis, treatment, survivorship or end-of-life care of sarcoma and not been able to find out the answer? Are there any aspects of sarcoma which you feel should be addressed by research? If so, please take part in this survey.
Why we need your help?
We want to know what needs to be improved about the diagnosis, treatment and care of people living with or beyond sarcoma. We want to use your questions to help set priorities for research. This means: Your experience with this disease will help us understand where research is needed that will make a difference to people’s lives.
Who can get involved?
We want to hear from you if you are:
· a person with sarcoma (including gastrointestinal stromal tumors (GIST) and desmoid tumors) · a sarcoma survivor or person who once had sarcoma · a carer for, or family member of, someone with sarcoma · a bereaved carer or family member of someone who had sarcoma · a healthcare professional working with people with sarcoma · an organisation representing the interests of people with sarcoma · a researcher focusing on sarcoma
What are we asking you to do?
Please think about your own experiences of sarcoma. Fill out the survey on what unanswered questions you might have about sarcomas, based on your experiences as a patient, survivor, carer, healthcare professional, sarcoma organisation or researcher.
This may include your complete “journey” from having first symptoms to diagnosis (maybe incorrect diagnosis?), treatment(s), support, follow-up (checkups after end of treatment), general management of the disease or end-of-life care.
By understanding your questions about sarcomas and everything entailed, we can identify the challenges for sarcoma patients in daily life. We will also be able to define aspects of sarcoma management that have major relevance to patients and can improve the situation for sarcoma patients. We can then work out what research is needed to address and answer them.
You can participate anonymously if you prefer.
What will happen to your question(s)?
· Each question will be checked to see if existing research already answers it · Questions that haven’t already been answered by research will be prioritized. This will be done by patients, carers and healthcare professionals. If you’re interested in taking part in this, you can tell us later in this survey · At the end of the process, a top 10 list of research questions will be published which we will use to influence future research decisions.