High prevalence of persistent emotional distress in desmoid tumor

Abstract

Objective: Clinical experience suggests a high prevalence of emotional distress in patients with desmoid tumor (DT). We examine longitudinal Distress Assessment and Response Tool (DART) scores to estimate prevalence and persistence of distress, and compare cross-sectional data between DT and malignant sarcoma cohorts, to identify predictors of distress. Methods: Patients with DT completed DART at: T1-diagnosis, T2-during, T3-<6 months, and T4-≥6 months, post-treatment. DART includes patient-reported outcome measures of physical symptoms (ESAS-r), depression (PHQ-9), anxiety (GAD-7), and social difficulties (SDI-21). Descriptive prevalence and persistence of anxiety, depression, and wellbeing are reported, and mixed model regression analyses determine predictors of distress. Results: Between 2012 and 2018, a total of 152 DART screens from 94 patients with DT were completed (T1: n = 44, T2: n = 31, T3: n = 22, T4: n = 55). Patients had a mean age 40 years, 78% were female and DT locations were abdominal wall (48%), extremity (30%), and mesentery (22%). Moderate to severe ESAS-r scores (≥4) persisted at T4 for anxiety (20%), depression (13%), and poor wellbeing (31%). Compared to 402 patients with malignant sarcoma, patients with abdominal wall sited DT reported severe PHQ-9 and GAD-7 scores twice as frequently. Abdominal wall location, female sex, history of mood problems, and psychosocial concerns were significant predictors of anxiety, depression, and poor wellbeing in DT. Conclusions: Adults with DT experience persistently high emotional distress compared to patients with malignant sarcoma. Women with abdominal wall DT, prior mood, and current psychosocial concerns need early attention within multidisciplinary treatment settings to reduce persistent distress. K E Y W O R D S aggressive fibromatosis, cancer, desmoid tumor, Edmonton Symptom Assessment Scalerevised (ESAS-r), emotional distress, oncology, psychological distress, quality of life (QOL), sarcoma supportive careThe last two authors contributed equally to this article and share last authorship.

Desmoid Tumors: A Comprehensive Review

“…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...…”

“…The HRQOL burden of patients with DT has been assessed using a number of non–DT-specific instruments such as the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire–Core Module (EORTC QLQ-C30), Generalized Anxiety Disorder scale-7 (GAD-7), Patient Health Questionnaire-9 (PHQ-9), Edmonton Symptom Assessment System-revised (ESAS-r), Distress Assessment and Response Tool (DART), and Child Health Questionnaire (Table 1 ) [ 4 , 39 , 46 , 47 ].…”

Recurrent Abdominal Aggressive Fibromatosis with Incapacitating Hip Contracture – A Case Report

“…The challenges of our case are the severity of the deformity and un-resectability of tumor. It is also known that abdominal fibromatosis has a pronounced effect on all aspects of emotional distress [ 10 ]. A young adult with severe handicap warranted intervention to improve the quality of his life even though high chances of recurrence are a possibility.…”

Does the Addition of Mutations of CTNNB1 S45F to Clinical Factors Allow Prediction of Local Recurrence in Patients With a Desmoid Tumor? A Local Recurrence Risk Model

“…One important aspect in the management of desmoid tumors is the psychologic distress of patients and social impact of this disease in young patients. In a recent study conducted in Canada with 94 patients with desmoid tumors, the authors found a high prevalence of emotional distress, with anxiety, depression, and poor well-being as the most frequent disorders [27]. Additionally, the burden of a chronic disease in young, active patients should be measured because problems with interpersonal relationships (such as marriage) and socioeconomic problems such as job absenteeism are frequently reported by patients [41].…”