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.

Survey - Section 1 Research priorities

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* 1. Please tell us in your own words: What question(s) about diagnosis of sarcoma would you like to see answered by research?

You could think of incidence and survival of sarcoma, diagnostic tests, prognosis, second opinion, cause of sarcoma.

<If this topic does not apply to you, please go to the next question>

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* 2. Please tell us in your own words: What question(s) about sarcoma treatment(s)/treatment decisions would you like to see answered by research? Treatment entails all forms of therapies, from surgery to chemotherapy, radiotherapy, but also prostetics or plastic surgery or novel therapy options (immunotherapy, vaccines etc.).

You could think of risks of therapies, treatment options, placebo effects, benefit of immunotherapy for sarcomas, potential vaccines, quantity versus quality outcome treatment, involvement in clinical trials.

<If this topic does not apply to you, please go to the next question>

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* 3. Please tell us in your own words: What question(s) about sarcoma support would you like to see answered by research?

You could think of optimal information provision, managing expectations, effect of specialty centres.

<If this topic does not apply to you, please go to the next question>

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* 4. Please tell us in your own words: What question(s) about health-related quality of life issues and symptoms related to sarcoma would you like to see answered by research? Health-related quality of life can be defined as your well-being, outlining negative and positive features of living with and beyond sarcoma.

You could think of coping with emotions, body image, improvement physical performance, dealing side-effects of treatment, managing symptoms (pain, fatigue, depression, anxiety).

<If this topic does not apply to you, please go to the next question>

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* 5. Please tell us in your own words: What question(s) about sarcoma survivorship/ clinical follow-up would you like to see answered by research?

You could think of self-care, dealing with stress around scans, disease recurrence (disease coming back), nutrition, late effects of treatment (problems related to sarcoma that appear long-term after sarcoma diagnosis).

<If this topic does not apply to you, please go to the next question>

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* 6. Please tell us in your own words: What question(s) about end of life issues related to sarcoma would you like to see answered by research?

<If this topic does not apply to you, please go to the next question>

Survey – Section 2 Research involvement

We want to learn more about your opinions on how patients can or should be part of sarcoma research in general.

First, the term “patient” is an overarching term we are using that includes individuals with personal experience with a sarcoma. Patients may also include informal caregivers, family, and friends.

Second, patient engagement refers to meaningful, active collaboration between researchers and patients for example in research priority setting, research design, analysing data and applying new knowledge.

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* 7. Have you ever been asked to take part in sarcoma research? (Tick all boxes that apply)

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* 8. Have you ever been involved in sarcoma research? (Tick all boxes that apply)

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* 9. Do you want to be involved in research? (Tick all boxes that apply)

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* 10. Patients/carers can contribute meaningfully to the research process:

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* 11. How do you think patients/carers can contribute to the research process? (Tick all boxes that apply)

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* 12. Where do you think patients/carers can make an impact?

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* 13. Why do you think patients/carers do or don’t take part in research?

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* 14. What could help patient/carers to become involved?

Survey – Section 3 About you

To help us reach a wide range of people, it would be helpful to know a little more about you.

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* 15. Are you (please specify one or more):

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* 16. Are you

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* 17. How old are you?

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* 18. What is your ethnic origin?

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* 19. Which of the following best describes your highest level of education completed?

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* 20. In which country do you live/work?

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* 21. If you are a person with sarcoma, please specify your living arrangements

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* 22. How long are you (or the person with sarcoma) living with sarcoma?

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* 23. What type of sarcoma were you (or the person with sarcoma) diagnosed with?

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* 24. What histological subtype of sarcoma were you (or the person with sarcome) diagnosed with?

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* 25. What was the location of the sarcoma you (or the person living with sarcoma) were diagnosed with?

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* 26. Was a stage numeber given? If so, what was the stage of the sarcoma you (or the person with sarcoma) were diagnosed with?

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* 27. Did you (or the person you care(d) for) have a recurrence?

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* 28. Which of the following statements describes your situation (or the person diagnosed with sarcoma) at the moment? (Please tick all that apply)

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* 29. What is the intention of the treatment(s) you (or the person diagnosed with sarcoma) had or you are currently receiving?

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* 30. Since first diagnosis, which, if any, of the following treatments have you (or the person diagnosed with sarcoma) had or are you currently receiving? (Please tick all that apply)

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* 31. Do you (or the person diagnosed with sarcoma) have any other diseases?

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* 32. Would you like more information about the next stage of the project, where the research questions will be prioritized?

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* 33. Please fill in your email.

Consent

By participating in this survey you are agreeing to allow us to anonymously publish the questions you identify.

Thank you for taking the time to complete this survey. Your participation is important to us – please submit your responses as soon as possible.

 If you have any questions, please contact the study coordinator Dr. Olga Husson from the Netherlands Cancer Institute: o.husson@nki.nl
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