Patient Survey

Patient willingness to participate in cancer surveillance research is the ultimate determinant of study feasibility; therefore, investigation into the opinions and values of patients regarding participating in surveillance research is required to inform the development of the SAFETY trial.  To inform this key aspect of feasibility, we are conducting a patient survey to assess international patient willingness to participate in a study that randomizes patients to a post-operative surveillance regimen in the management of a primary extremity sarcoma. The primary objectives of this cross-sectional patient survey are to: A) assess patient knowledge with respect to post-operative surveillance B) assess and understand what factors influence patient comfort with being randomized to different surveillance protocols; and C) explore patient expectations of their post-operative cancer care.  Since there is no available validated tool to assess patient opinions and preferences, we developed a unique patient questionnaire for the purposes of this study.

All new patients who present to a participating sarcoma clinic are screened for study participation.  To be eligible for participation, patients have to: I) be at least 18 years of age; II) be able to read, understand and write in English, French or Spanish; III) be attending clinic for treatment of an extremity sarcoma; IV) have consented for surgery to treat his / her extremity sarcoma; and V) provide informed consent (if required).  Patients who are judged to be too ill to participate and those who are cognitively impaired are excluded from study participation.  Once a patient has been deemed to be eligible, he / she is provided with the questionnaire to complete.

At present, seven sites are currently open to enrolment across three countries (Canada, Spain and the United States) and a total of 78 patients have participated. 

The preliminary survey questionnaire responses suggest that most sarcoma patients believe that they have a good understanding of clinical research.  Furthermore, over half of respondents feel comfortable with being randomized to receive a treatment. Ultimately, 80% of respondents have indicated that they would agree to participate in the SAFETY trial if eligible.  Thus far, the most common reasons for agreeing to participate in such a RCT are: A) belief that the study offers the best treatment available; B) desire to contribute to scientific research; and C) belief that the results from the study could benefit future cancer patients.  Of those who would decline to participate, the most common reason is the belief that they cannot currently cope with the additional requirements of a research study.  These early results are promising with respect to patient willingness to participate in such a study and provide some insight on how best to approach the discussion of the study with patients during the consent process.