I am a student at The Chicago School. This study is being conducted as a part of my dissertation requirement for obtaining my Doctorate in Clinical Psychology.

I am asking you to participate in a research study exploring how desmoid tumor patients are impacted by their desmoid tumor diagnosis. You will be asked to complete seven surveys asking how the presence of a desmoid tumor affects your quality of life, self-esteem, and resilience. This will take 15-20 minutes. This may cause loss of confidentiality, emotional distress or upset, and reading materials or questions regarded as sensitive or invasive. Although you may not benefit, it will help to understand how clinicians and medical professionals can better understand the psychological and physical experiences of desmoid tumor patients, thus, allowing for more supportive and holistic care.

Please take your time to read the entire document and feel free to ask any questions before agreeing to participate.

Purpose: The purpose of this study is to understand how symptom severity and length of time of desmoid tumor diagnosis impact a patient’s quality of life, resilience, and self-esteem. This study aims to address the psychological needs of desmoid tumor patients and emphasize the importance of supporting desmoid tumor patients with an integrated health care team that provides individualized and tailored care.

Procedures: You will be asked to complete a demographic questionnaire assessing basic demographic information as well as general information regarding your length of diagnosis of desmoid tumor and treatment regimen. You will also be asked to complete a Perceived Health Report Survey assessing your experiences with medical care and emotional well-being based on a Likert-scale. Additionally, you will be asked to complete five surveys. The five surveys are assessing self-esteem, overall physical health, quality of life, emotional resilience and physical resilience. Throughout the surveys, you will be asked to either agree or disagree or rate the question on a given scale. Completion should take approximately 15-20 minutes. This one-time survey will take place online via SurveyMonkey. Upon completion, you will receive a digital debriefing statement with referrals and our contact information.

Compensation: As a token of appreciation for all patient participation, the researcher will make a $100.00 donation to the Desmoid Tumor Research Foundation (DTRF).

Risks to Participants: The risks to this study are loss of confidentiality, emotional distress or upset, and reading materials or questions regarded as sensitive or invasive. All information that is collected will be kept on a password protected computer. If you experience any discomfort or distress as a result of participating in this study and desire mental health support, you can contact a mental health professional. A referral can be found on the ATSA website (http://www.atsa.com/referral) or you can contact the Crisis Call Center at 1(800)273-8255 which is available 24 hours a day. Materials or questions regarded as sensitive or invasive will be minimized by including only essential and avoid unnecessary intrusive inquiries.

Benefits to Participants: You will not benefit from this study. However, we hope the information learned from this study may benefit society in our understanding of the psychological and physical impact of living with a rare disease, like a desmoid tumor. Furthermore, this study may allow for mental health and medical professionals to approach treatment of patients with a desmoid tumor in a more comprehensive manner.