How can we assess health-related quality of life in sarcoma patients?

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This part of our research has now finished. Thank you to everyone who contributed.

Patient holding paper questionnaire sitting with NHS staff member

Help us design questionnaires to capture their unique experiences and quality of life

Background

Symptoms and side effects of sarcoma and its treatment(s) may have an impact on a patient’s well-being. However, there is currently no way to measure quality of life specifically in sarcoma patients.

We would like to find out how the diagnosis with a sarcoma has affected patients physically, socially and emotionally in order to develop a questionnaire about quality of life and symptom burden for sarcoma patients. This questionnaire will allow future research to understand the patient’s perspective on how the disease and treatments affect their lives.

To identify the most relevant issues that the questionnaire should cover, we have reviewed previous research and interviewed 159 patients and 35 healthcare providers.

We are now drafting the questions that will go into the questionnaire based on the issues that came up in our review of previous research and interviews.

How can I get involved?

Tell us what you think of our questionnaire by completing the survey below.

Share your comments and suggestions about our research on our Ideas Board.

This project is funded by the European Organisation for the Research and Treatment of Cancer (EORTC) Quality of Life Group.





Help us design questionnaires to capture their unique experiences and quality of life

Background

Symptoms and side effects of sarcoma and its treatment(s) may have an impact on a patient’s well-being. However, there is currently no way to measure quality of life specifically in sarcoma patients.

We would like to find out how the diagnosis with a sarcoma has affected patients physically, socially and emotionally in order to develop a questionnaire about quality of life and symptom burden for sarcoma patients. This questionnaire will allow future research to understand the patient’s perspective on how the disease and treatments affect their lives.

To identify the most relevant issues that the questionnaire should cover, we have reviewed previous research and interviewed 159 patients and 35 healthcare providers.

We are now drafting the questions that will go into the questionnaire based on the issues that came up in our review of previous research and interviews.

How can I get involved?

Tell us what you think of our questionnaire by completing the survey below.

Share your comments and suggestions about our research on our Ideas Board.

This project is funded by the European Organisation for the Research and Treatment of Cancer (EORTC) Quality of Life Group.





  • How do you think we should format and word the questionnaire?

    Now that we've identified the issues to ask about in the quality of life questionnaire, we would like your feedback on it's structure. 

    In the first question we would like to know your views on formatting questions about medical aids. In the following questions, we would like to know if our wording makes sense to you. 


    QUESTION 1. Please share whether you prefer the format of Version One or Version Two below:


    In Version One we have questions asking about 
    medical aids and their impact in the section with 
    the relevant body part or function 
    (Mobility, Bowel Problems)
    In Version Two we group questions about medical aids (such as a walking aid or stoma) and how they may impact their lives separately to questions about body part or body function.

    This part of our research has now finished. Thank you to everyone who contributed.
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