1510P - Pain burden in patients with aggressive fibromatosis/desmoid tumour (AF/DT): a survey from the French Patient Advocacy Group: SOS “Desmoide”

Date 29 September 2012
Event ESMO Congress 2012
Session Poster presentation I
Topics Soft Tissue Sarcomas
Palliative and Supportive Care
Presenter Philippe Rigaux
Authors P. Rigaux1, D. Lefebvre-Kuntz2, .1
  • 1Medical Oncology, Centre Oscar Lambret, 59020 - Lille/FR
  • 2Anesthesiology, Centre Oscar Lambret, 59020 - Lille/FR



Little is known about the frequency, the intensity and the consequences of pain in patients with AF/DT. The French patient advocacy group is frequently contacted by patients and caregivers about the treatment of pain and suspects that this problem is underestimated by physicians.


The association had conducted a survey using a structured questionnaire, made with the help of some algologists and oncologists. This questionnaire aims at assessing the frequency, the intensity (using Visual Analogic Scale - VAS) and the consequence of pain. 233 questionnaires have been sent. Classical descriptive statistics (frequency, 95%-CI, median & extreme values) have been used.


We have received 102 questionnaires (44%) from 18 men and 82 women (2 ND) with a median age of 41 (17-85). AF/DT was diagnosed since 7 years (1-36). 73 pts underwent surgery (71.5% [62.8-80.3]). Pain was present in 65 cases (63.7% [54.4-73.0]). The median intensity of pain was 1 (0-8) at the time of the questionnaire fulfilling. The median intensity of pain in the past week was 3 (0-10). The maximal intensity of pain in the past week was 5 (0-10). Pain was described as permanent one in 25 cases (24.5% [16.1-32.8]). This pain was associated with sleep disturbance in 48 cases (47.1% [37.3-56.7]). Pain was associated with paroxysmal episodes in 65 cases (63.7% [54.4-73.0]). 38 pts used antalgics on the everyday basis (34.3% [25.1-43.3]), including non-steroidal anti-inflammatory in 14 cases and morphinic in 9 cases. 19 pts only were treated by an algologist. The consequences on the ability to go on working is not negligible, because 17 pts have stopped work because of pain, 7 have a part-time job because of pain and 2 pts have changed work because of pain. This pain altered the everyday activity in 14 cases and the leisure activity in 12 cases. This pain led to irritability in 30 cases.


Using only VAS in a short-time frame, physicians treating AF/DT pts underestimated the consequence of pain. AF/DT is associated with paroxysmal episodes in more than 60% of cases. This pain led to important socio-familial and economical consequences. Further studies are necessary to better describe and then treat this AF/DT-related pain. SOS Desmoid suggests that pain be measured in further clinical trials focusing this particular tumour.


All authors have declared no conflicts of interest.