Pain burden in desmoid tumor patients: a survey of the French Advocacy Group SOS Desmoid.
BACKGROUND
The French Patient Advocacy Group SOS Desmoid conducted a survey to measure the pain burden of desmoid tumor patients.


METHODS
We used a structured questionnaire to measure the occurrence and consequences of pain.


RESULTS
The pain occurrence was approximately 63%. In one-third of the cases, the pain was permanent. This pain led to severe social and economic consequences.


CONCLUSIONS
The occurrence of pain and its consequences are underestimated among these patients. Pain needs to be closely and precisely measured and monitored in future clinical trials to assess the efficacy of proposed treatments better.
SOS Desmoïde, 45, rue René-La-Combe, 49100 Angers, France.
Philippe
P
Rigaux
Centre Oscar Lambret, Pain Clinic and Anesthesiology Department, 59020 Lille, France.
Danièle
D
Lefebvre-Kuntz
SOS Desmoïde, 45, rue René-La-Combe, 49100 Angers, France; Centre Oscar Lambret, General Oncology Department, 59020 Lille, France. Electronic address: n-penel@o-lambret.fr.
Nicolas
N
Penel
D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000700:Analgesics / Q000627:therapeutic use; D018222:Desmoid Tumors / Q000150:complications* / Q000453:epidemiology; D005602:France / Q000453:epidemiology; D006306:Health Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D010146:Pain / Q000188:drug therapy / Q000453:epidemiology*; D010147:Pain Measurement; D012657:Self-Help Groups; D055815:Young Adult
D000700:Analgesics
Aggressive fibromatosis; Burden; Desmoid tumor; Douleurs; Fardeau; Fibromatose aggressive; Pain; Tumeur desmoïde