The Incidence and Severity of Physical Pain Symptoms in Marfan Syndrome: A Survey of 993 XXXX .

@entity1 @entity1614 @entity1118 @entity158
OBJECTIVE: To characterize the incidence, severity, quality, and treatment of @entity158 in a large cohort of @entity1614 @entity1 . MATERIALS AND METHODS: A web-based survey was distributed to all individuals on the @entity1614 Foundation listserv. Respondents who endorsed a diagnosis of @entity1614 were queried as to the presence, frequency, severity, location, and quality of their @entity158 and were asked to describe the specific treatments used to manage @entity158 . The primary outcome was the presence of @entity158 symptoms in respondents during the 7-day period preceding completion of the survey. RESULTS: Of the 993 @entity1 with a verified diagnosis of @entity1614 , 67% (95% confidence interval, 64%-69%) reported @entity158 in the preceding 7 days. Median (interquartile range) "average @entity158 " was 4 (3 to 5) on the numeric rating scale; "worst @entity158 " was 7 (5 to 8). "Worst @entity158 experienced" was >= 4 in 93% of respondents. Analgesic use to control @entity158 related to @entity1614 was reported in 56% of respondents with 55% reporting <50% @entity158 relief with this modality. Few @entity1 underwent interventional procedures for @entity158 control, despite intractable back and joint @entity158 being common. A majority (52%) of respondents rated " @entity1118 care" from their physicians as either "poor" or "fair." DISCUSSION: Our findings suggest that @entity158 symptoms in @entity1614 @entity1 are underestimated and likely undertreated. We propose a need for improved @entity1 and medical provider awareness of @entity158 management options in this population, including the development of effective algorithms to treat @entity158 in @entity1614 @entity1 .
