Pain burden in desmoid tumor patients: A survey of the French Advocacy Group SOS Desmoid

Rigaux, P; Lefebvre-Kuntz, Danièle; Penel, Nicolas

doi:10.1016/j.bulcan.2015.02.001

Cited by 20 publications

(20 citation statements)

References 12 publications

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“…Decision making should take into account location and growth of the tumor, but in particularly the symptoms of the patient. A recent study by the French patients advocacy group SOS desmoid showed that 63% of patients that participated in a survey reported pain [ 27 ].…”

Section: Discussionmentioning

confidence: 99%

Outcome of Nonsurgical Management of Extra-Abdominal, Trunk, and Abdominal Wall Desmoid-Type Fibromatosis: A Population-Based Study in the Netherlands

Broekhoven

Verschoor

Dalen

et al. 2018

Sarcoma

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Introduction Nonsurgical management of patients with desmoid-type fibromatosis (DF) is increasing. This study tries to provide insight on type, usage, and outcome of first-line nonsurgical management strategies. Patients and Methods From the Dutch Pathology Registry (PALGA), patients with extra-abdominal or trunk/abdominal wall DF, diagnosed between 1993 and 2013, were identified. First-line treatment was analyzed. Best response (BR) using RECIST criteria from start of treatment/surveillance until change of treatment or last follow-up was analyzed. Results Ninety-one of the 1141 identified patients had first-line nonsurgical management. The percentage of patients treated nonsurgically increased from 0.6% in 1993–1998 to 12.8% in 2009–2013. Thirty-seven patients had surveillance (41%), 35 radiotherapy (38%), and 19 systemic treatment (21%). BR for surveillance was complete response (CR) in 2/37, partial response (PR) in 4/37, stable disease (SD) in 21/37, progressive disease (PD) in 5/37, and unknown in 5/37 patients. BR for radiotherapy was CR in 4/35, PR in 11/35, SD in 16/35, and unknown in 4/35. BR for systemic treatment was CR in 1/19, PR in 1/19, SD in 10/19, PD in 2/19, and unknown in 5/19. Totally, 91% of patients did not progress. Discussion Given the low percentage (9%) of PD of nonsurgical management, these data can be used in shared decision making with the patient regarding optimal treatment.

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Section: Discussionmentioning

confidence: 99%

Outcome of Nonsurgical Management of Extra-Abdominal, Trunk, and Abdominal Wall Desmoid-Type Fibromatosis: A Population-Based Study in the Netherlands

Broekhoven

Verschoor

Dalen

et al. 2018

Sarcoma

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“…18 The mechanism of pain in DT is complex and multifactorial, but clinical experience suggests it is often considered out of proportion to the physical effects of the DT, raising the possibility of emotional distress contributing to a presentation of total pain. The French Patient Advocacy Group "SOS Desmoide" surveyed patients with DT, median time from diagnosis of 7 years, and reported an increased pain burden in 63% patients; pain had a direct effect on sleep disturbance (73%), irritability (46%), anxiety (15%), and ability to work fulltime (36%).…”

Section: Introductionmentioning

confidence: 99%

“…Systemic options, including low dose chemotherapy 16 or tyrosine kinase inhibitors 17 reported an increased pain burden in 63% patients; pain had a direct effect on sleep disturbance (73%), irritability (46%), anxiety (15%), and ability to work fulltime (36%). 18 The mechanism of pain in DT is complex and multifactorial, but clinical experience suggests it is often considered out of proportion to the physical effects of the DT, raising the possibility of emotional distress contributing to a presentation of total pain. 19 Our own clinical experience suggests that emotional distress is experienced to a greater magnitude than predicted by the underlying pathology.…”

Section: Introductionmentioning

confidence: 99%

“…Despite a benign diagnosis, for patients undergoing chemotherapy, anxiety can heighten the anticipation and experience of physical symptoms such as pain. The French Patient Advocacy Group “ SOS Desmoide ” surveyed patients with DT, median time from diagnosis of 7 years, and reported an increased pain burden in 63% patients; pain had a direct effect on sleep disturbance (73%), irritability (46%), anxiety (15%), and ability to work fulltime (36%) . The mechanism of pain in DT is complex and multifactorial, but clinical experience suggests it is often considered out of proportion to the physical effects of the DT, raising the possibility of emotional distress contributing to a presentation of total pain …”

Section: Introductionmentioning

confidence: 99%

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High prevalence of persistent emotional distress in desmoid tumor

et al. 2019

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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.

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“…The European Organisation for Research and Treatment of Cancer (EORTC)/Soft Tissue and Bone Sarcoma Group has suggested that a "watch and wait strategy" is the first choice in the treatment of DT, while wide resection should be considered as a treatment option if postoperative morbidity is acceptable [4]. The incidence of pain in patients with DT is approximately 63% [5]. However, functional disorder by DT has not previously been reported.…”

Section: Introductionmentioning

confidence: 99%

Desmoid Tumor Causing Hip Joint Contracture: A Case Report

Hashimoto¹,

Nishimura²,

Toriumi³

et al. 2018

OJO

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Desmoid tumor (DT) is a relatively uncommon, cytologically bland fibrous neoplasm that is associated with possibility of local recurrence but without the potential to spread to other parts of the body. This disease affects mostly younger adults and is the most common cause of abdominal wall masses in women 20 -35 years of age. However, it may involve nearly every body part, including the extremities, head and neck, trunk, and abdominal cavity; as such, patients with DT may present to a range of general and subspecialty radiologists. The consensus for treatment has changed over the past decade, with most centers moving away from primary radical surgery towards a front-line "wait-and-see" policy. Here, we present a case of a tumor mass that induced hip joint contracture. DT does not usually cause functional disorder. Oncologists should be aware that a desmoid tumor can cause hip joint contracture if the mass occurs in the gluteal region. Moreover, DT resulting in such a functional disorder should be treated by resection.

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Pain burden in desmoid tumor patients: A survey of the French Advocacy Group SOS Desmoid

Cited by 20 publications

References 12 publications

Outcome of Nonsurgical Management of Extra-Abdominal, Trunk, and Abdominal Wall Desmoid-Type Fibromatosis: A Population-Based Study in the Netherlands

Outcome of Nonsurgical Management of Extra-Abdominal, Trunk, and Abdominal Wall Desmoid-Type Fibromatosis: A Population-Based Study in the Netherlands

High prevalence of persistent emotional distress in desmoid tumor

Desmoid Tumor Causing Hip Joint Contracture: A Case Report

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