Sarcoma Foundation of America (SFA) has developed a large-scale survey, the “Patient Pathway and Impact of Sarcoma from the Perspective of Patients in the USA Questionnaire (aka the Sarcoma Journey Survey)” to capture the lived experience of the people affected by sarcoma and their caregivers to advance research and drive advocacy efforts on behalf of the community.
The patient voice was integral in the survey development process to ensure transparency and improve the quality of the information collected to better serve patients and their caregivers. We had groups of patients, family members, and caregivers help to develop the questions and review the questionnaire before submission to the Institutional Review Board (IRB) for approval.
Our goal is to share the information collected with the broader sarcoma community to improve outcomes for patients with this rare cancer.
This survey is also vitally important as we need to collect data for sarcoma subtypes to help advance research and effective treatments. Finally, the survey will gather data on patient experiences that can be overlaid with clinical data to add greater dimension and comprehensiveness of our understanding of the impacts of sarcoma. We hope this will help expedite the process of getting more approved and less toxic treatments available to patients.
The Sarcoma Journey Survey is for patients or caregivers who are at least 18 years in age and who received their entire treatment for their sarcoma in the United States. If a patient is under 18 years old, an adult caregiver must complete the survey for them. If an adult patient cannot fill out the survey on their own, a caregiver can help by completing it for them.
Your participation is critical to ensuring the patient voice and experience is included in the sarcoma landscape. Moreover, our ability to look across subtypes for common experiences, potential treatments, and impacts can greatly advance our knowledge about sarcoma.
We will provide results to all participants once the survey is complete. Our goal is to publish this data so that it can be used as a resource to drive advancements in sarcoma. We very much appreciate your time and contribution to the sarcoma community.
Aims:
- Published data to change practices and increase resources for sarcoma patients
- Use the findings to inform SFA’s advocacy and dissemination efforts
Please note that you must be at least 18 years of age to participate in this survey. If you are less than 18 years old, please share the survey information with your parent/caregiver who can take the survey on your behalf.
(IRB Protocol ID 0686)
