Contributors: Centre Régional de Lutte contre le Cancer Oscar Lambret Lille (UNICANCER/Lille); Université de Lille-UNICANCER; Centre Hospitalier Régional Universitaire CHU Lille (CHRU Lille); Evaluation des technologies de santé et des pratiques médicales - ULR 2694 (METRICS); Université de Lille-Centre Hospitalier Régional Universitaire CHU Lille (CHRU Lille); Institut Curie Paris; Université Paris Sciences et Lettres (PSL); Centre de recherche en épidémiologie et santé des populations (CESP); Université de Versailles Saint-Quentin-en-Yvelines (UVSQ)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Hôpital Paul Brousse-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris-Saclay; Institut Bergonié Bordeaux; UNICANCER; Hôpital Cochin AP-HP; Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP); Université Paris Cité (UPCité); Centre Hospitalier Universitaire Strasbourg (CHU Strasbourg); Hôpitaux Universitaires de Strasbourg (HUS); Centre Jean Perrin Clermont-Ferrand (UNICANCER/CJP); Institut Gustave Roussy (IGR); Institut Paoli-Calmettes (IPC); Fédération nationale des Centres de lutte contre le Cancer (FNCLCC); Centre de Recherche en Cancérologie de Marseille (CRCM); Aix Marseille Université (AMU)-Institut Paoli-Calmettes (IPC); Fédération nationale des Centres de lutte contre le Cancer (FNCLCC)-Fédération nationale des Centres de lutte contre le Cancer (FNCLCC)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre National de la Recherche Scientifique (CNRS); Centre de Lutte Contre le Cancer Henri Becquerel Normandie Rouen (CLCC Henri Becquerel); Centre Léon Bérard Lyon; Ligue Contre le Cancer: PRE2016.LCC/NP; Institut National Du Cancer, INCa; The authors would like to thank the patients and families for their participation in this study, the staff members involved in the trial management and data analysis, in particular Emilie Decoupigny André Michel Bimbaï and Marie Vanseymortier from the sponsorship unit at Centre Oscar Lambret, Lille, all the investigators and their teams who participated in the trial, the patient advocacy group “SOS Desmoïde,” Françoise Bonichon for her help in literature research and the data managers from Centre de Traitement des Données du Cancéropôle Nord-Ouest (CTD-CNO), who oversaw the trial data management; the CTD-CNO clinical research platform was funded by the French National Cancer Institute (INCa) and “La Ligue Nationale Contre le Cancer”.; This work was supported by a personal grant from a donor (S. Wisnia), the Ligue Nationale Contre le Cancer (PRE2016.LCC/NP), Intersarc (funded by the French National Cancer Institute, INCA), APICIL Foundation and SOS Desmoïde. These funders had no role in the design, conduct or reporting of this work.; The authors would like to thank the patients and families for their participation in this study, the staff members involved in the trial management and data analysis, in particular Emilie Decoupigny André Michel Bimbaï and Marie Vanseymortier from the sponsorship unit at Centre Oscar Lambret, Lille, all the investigators and their teams who participated in the trial, the patient advocacy group “SOS Desmoïde,” Françoise Bonichon for her help in literature research and the data managers from Centre de Traitement des Données du Cancéropôle Nord‐Ouest (CTD‐CNO), who oversaw the trial data management; the CTD‐CNO clinical research platform was funded by the French National Cancer Institute (INCa) and “La Ligue Nationale Contre le Cancer”.
Abstract: International audience ; The aim of this study is to evaluate the prevalence, determinants and prognostic value of pain at diagnosis in patients with desmoid-type fibromatosis (DF). We selected patients from the ALTITUDES cohort (NCT02867033), managed by surgery, active surveillance or systemic treatments, with pain assessment at diagnosis. Patients were invited to fill QLQ-C30 questionnaire and Hospital Anxiety Depression Scale. Determinants were identified using logistic models. Prognostic value on event-free survival (EFS) was evaluated using the Cox model. Overall, 382 patients were included in the current study (median age: 40.2 years; 117 men). The prevalence of pain was 36%, without significant difference according to first-line treatment (P =.18). In the multivariate analysis, pain was significantly associated with tumor size >50 mm (P =.013) and tumor site (P <.001); pain was more frequent in the neck and shoulder locations (odds ratio: 3.05 [1.27-7.29]). Pain at baseline was significantly associated with poor quality of life (P <.001), depression (P =.02), lower performance status (P =.03) and functional impairment (P =.001); we also observed a nonsignificant association with anxiety (P =.10). In the univariate analysis, baseline pain was associated with poor EFS; the 3-year EFS was 54% in patients with pain compared to 72% in those without pain. After adjustment for sex, age, size and line of treatment, pain was still associated with poor EFS (hazard ratio: 1.82 [1.23-2.68], P =.003). One third of recently diagnosed patients with DF experienced pain, especially those with larger tumors and neck/shoulder locations. Pain was associated with unfavorable EFS after adjustment for the confounders.
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