2019
DOI: 10.1002/cncr.32555
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Prospective development of a patient‐reported outcomes instrument for desmoid tumors or aggressive fibromatosis

Abstract: BACKGROUND: Desmoid tumors (or aggressive fibromatosis) are locally infiltrative connective-tissue tumors that can arise in any anatomic location; they can be asymptomatic, or they can result in pain, deformity, swelling, and loss of mobility and/or threaten visceral organs with bowel perforation, hydronephrosis, neurovascular damage, and other complications. Existing clinical trial endpoints such as the Response Evaluation Criteria in Solid Tumors (version 1.1) and progression-free survival are inadequate in … Show more

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Cited by 43 publications
(48 citation statements)
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“…Today, solely one DTF-specific questionnaire, the Gounder/DTRF Desmoid Symptom/Impact Scale, is available and currently mainly used in the setting of clinical trials [ 24 – 26 ]. The findings of our study will be used for the development of a DTF-specific tool, according to the EORTC guidelines, which can be used, accompanied by the EORTC QLQ-C30 HRQoL instrument and will be useful for observational studies, clinical trials, and clinical care.…”
Section: Discussionmentioning
confidence: 99%
“…Today, solely one DTF-specific questionnaire, the Gounder/DTRF Desmoid Symptom/Impact Scale, is available and currently mainly used in the setting of clinical trials [ 24 – 26 ]. The findings of our study will be used for the development of a DTF-specific tool, according to the EORTC guidelines, which can be used, accompanied by the EORTC QLQ-C30 HRQoL instrument and will be useful for observational studies, clinical trials, and clinical care.…”
Section: Discussionmentioning
confidence: 99%
“…In some cases, the tumor may be stable for a long time without obvious clinical symptoms, while in other cases, it may rapidly increase in size. Intra-abdominal DTs can cause intestinal obstruction (9). DTs located in the extremities are generally not life-threatening conditions that would cause a patient's death, but they can cause patients to have pain, restricted mobility, and loss of function (9).…”
Section: Introductionmentioning
confidence: 99%
“…Intra-abdominal DTs can cause intestinal obstruction (9). DTs located in the extremities are generally not life-threatening conditions that would cause a patient's death, but they can cause patients to have pain, restricted mobility, and loss of function (9). In some studies, one of the problems faced by patients with extremity tumors is poor prognosis; that is, the probability of recurrence after surgical resection is higher than in other locations, and some patients may even face the risk of amputation (10,11).…”
Section: Introductionmentioning
confidence: 99%
“…In collaboration with The Desmoid Tumor Research Foundation, DT patient-specific PRO measures have already been developed and are currently validated in prospective clinical trials. 19 More specific research for pain management or functional impairment is urgently needed. Comprehensive programs for patients with DTs should include physical, psychological, and social support.…”
Section: Pain Quality Of Life Fertility and Pregnancymentioning
confidence: 99%
“…Again, the available literature for evaluating HRQoL in patients with DTs is scarce, and upcoming clinical trials must integrate HRQoL, including levels of functioning and symptoms (most importantly pain), as an endpoint. In collaboration with The Desmoid Tumor Research Foundation, DT patient–specific PRO measures have already been developed and are currently validated in prospective clinical trials 19 . More specific research for pain management or functional impairment is urgently needed.…”
Section: Summary Of the Management Of The Disease According To The Glmentioning
confidence: 99%