“…Comparison of QOL subscales scores according to initial strategy (wait and see vs. surgery/chemotherapy) found no differences (PF = 87.3 vs. 84.9, P = 0.80; RP = 83.4 vs. 78.7, P = 0.72; BP = 78.9 vs. 78.2, P = 0.95; GH = 59.7 vs. 60, P = 0.97) Gounder et al [ 51 ] | Qualitative study using concept elicitation and cognitive interviews | Patients with localized or multifocal DT, n = 46 ( n = 31 concept elicitation interviews, mean age, 44 y; n = 15 cognitive interviews, mean age, 45 y) | Gounder/Desmoid Tumor Research Foundation (DTRF) Desmoid Symptom/Impact Scale (GODDESS) | Resulting instrument consists of an 11-item symptom scale and a 17-item impact scale. GODDESS is now translated into Spanish, Dutch, French, Italian, German, and Japanese and is available as an exploratory endpoint for research studies Most frequent reported symptoms across tumor locations: • Disfigurement (81%) • Nerve pain (71%) • Decreased range of motion (68%) • Muscle pain (65%) • Fatigue (65%) Most frequent reported impacts on patients’ lives: • Fear (84%) • Sleep disturbance (77%) • Concern about lack of knowledge among healthcare providers (74%) |
Ingley et al [ 39 ] | Longitudinal assessment of Distress Assessment and Response Tool (DART) scores in patient cohorts to identify predictors of distress for patients living with DT, and cross-sectional comparison of DART scores between DT and sarcoma patients | Patients with DT, n = 94 (152 completed DART screens), mean age: 40 y Patients with malignant sarcoma, n = 402 (2422 DART screens), mean age: 56 y | DART, which includes PRO measures of physical symptoms (ESAS-r), depression (PHQ-9), anxiety (GAD-7), and social difficulties (SDI-21) | Persistent emotional distress associated with DT, including anxiety, depression, and poor well-being were consistently worse in DT patients versus sarcoma patients Living with DT is similar to living with a chronic disease with long periods of stabilization; however, the uncertainty associated with inconsistent growth patterns and the fear of progression and recurrence leads to high levels of anxiety Location of the DT (specifically, abdominal wall location vs. extremity and referenced to mesenteric) had a significant overall effect on all aspects of emotional distress, including anxiety, depression, and well-being ( P = 0.02 for all) With regard to the cross-sectional comparison with sarcoma patients, while sarcoma patients had more pronounced shortness of breath ( P = 0.03 vs. DT patients), other physical symptoms such as appetite, nausea, pain, drowsiness, and tiredness were similar in severity between cohorts The emotional distress symptoms, anxiety ( P = 0.01), depression ( P = 0.01), and well-being ( P = 0.01) were significantly worse in patients with an abdominal wall DT than the other groups, while DT outside the abdomina... |
…”