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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.
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 can we assess health-related quality of life in sarcoma patients? has finished this stage
Patient, health care professionals and researchers agreed it was important to develop a measure of quality of life specifically for sarcoma patients.
June 2018
How can we assess health-related quality of life in sarcoma patients? has finished this stage
We designed this study to develop the measure which was supported by the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Group and Soft Tissue and Bone Sarcoma Groups.
May 2019-August 2020
How can we assess health-related quality of life in sarcoma patients? has finished this stage
Sarcoma patients were interviewed about the impact of sarcoma and its treatment on their physical, psychological, and social well-being. Health care professionals also commented on the issues they see in sarcoma patients.
August 2020-December 2020
How can we assess health-related quality of life in sarcoma patients? has finished this stage
We analysed the interviews to identify important issues related to quality of life.
Current
How can we assess health-related quality of life in sarcoma patients? is currently at this stage
We are now formatting the issues into a questionnaire that can be presented back to patients.
March 2021-January 2022
this is an upcoming stage for How can we assess health-related quality of life in sarcoma patients?
The newly formatted questionnaire will be tested with new patients and healthcare professionals.