MSK/DTRF Patient Reported Outcome (PRO) Tool - Desmoid Tumor Research Foundation
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MSK/DTRF Patient Reported Outcome (PRO) Tool

We are thrilled to announce that the groundbreaking MSK/DTRF Patient Reported Outcome (PRO) tool has been published and is being implemented in clinical trials.

Read the publication here, entitled, “Prospective development of a patient-reported outcomes instrument for desmoid tumors or aggressive fibromatosis.”

Funded by DTRF, this tool has been developed in collaboration with Memorial Sloan Kettering Cancer Center and IQVIA, 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 MSK/DTRF Desmoid Tumor Symptom Scale (DTSS, which includes 11 items) and the MSK/DTRF Desmoid Tumor Impact Scale (DTIS, which includes 17 items) are the first patient-reported outcome (PRO) instruments 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 experienced across tumor locations. Some symptoms mentioned are specific to tumor locations, especially abdominal tumors. Common 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 being implemented in clinical trials for further evaluation of their measurement properties.

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