Abstract

Objective Pain in Marfan syndrome is common, although frequently under diagnosed and undertreated. Few studies have investigated the treatment of pain symptoms in Marfan syndrome and no study has reported on the use of opioid therapy in this patient population. This study aims to characterize the use of pain treatment interventions, including opioid use in individuals with Marfan syndrome. We hypothesize that opioid use would be associated with worse pain and greater psychological burden, and that pain-related disability would moderate opioid use. Methods Individuals with Marfan syndrome completed an online questionnaire assessing pain severity, psychological burden, and pain management therapies. The sample reporting pain (N = 218) were 74.5% female, average age ranging from 35 to 44 years, predominantly white (91%), and majority are employed (53%). Results Participants frequently use a combination of pharmacological and non-pharmacological therapies, and the most commonly used treatments are over the counter medications and opioid medications. Use of opioids, and non-opioid medications, but not non-pharmacological treatments, increases with pain severity. Individuals who use opioids (34%) report more severe and frequent pain compared to non-opioid users, perceive greater pain-related disability and psychological burden, and more frequently utilize the emergency department. Conclusion Pharmacological and non-pharmacological treatment for pain in Marfan syndrome is common, although psychotherapeutic interventions are significantly underutilized. Further studies are needed to address pain management in Marfan syndrome. Pain therapies should be multimodal and include adjunctive interventions that reduce pain and suffering, improve function, and enhance quality of life in this patient population.

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