DTRF's Patient Reported Outcome (PRO) Tool - Desmoid Tumor Research Foundation
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DTRF’s Patient Reported Outcome (PRO) Tool

We are thrilled to announce that the groundbreaking DTRF Patient Reported Outcome (PRO) tool is ready for implementation in a clinical trial. The tool, funded by DTRF, has been developed in collaboration with Memorial Sloan Kettering Cancer Center and Quintiles, a leading PRO company.

The tool consists of questionnaires designed to glean data on the patient experience while being treated in a clinical trial. The Desmoid Tumor Symptom Scale (DTSS, which includes 11 items) and Desmoid Tumor Impact Scale (DTIS, which includes 17 items) are the first patient-reported outcome (PRO) instruments being developed specifically to measure symptom and impact concepts most relevant and important to the patient’s experience with desmoid tumors.

These instruments were developed based on qualitative interviews with patients diagnosed with desmoid tumors.

Pain and fatigue are among the most commonly mentioned and disturbing symptoms that were mentioned across tumor locations. Some symptoms were specific to tumor locations, especially abdominal tumors. Frequently mentioned and disturbing impacts include sleep disturbance, difficulty with movement, altered appearance, impact on daily activities, and emotional impacts such as fear and anxiety.

Once the draft PRO questionnaires were developed, additional patient interviews were conducted to test and refine them. The instruments were updated based on the feedback received. The DTSS and DTIS are now ready for implementation in a clinical trial for further evaluation of their measurement properties.

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