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Frank D Buono,1 Lauretta E Grau,2 Matthew E Sprong,3 Kenneth L Morford,4 Kimberly J Johnson,5 David H Gutmann61Department of Psychiatry, Yale School of Medicine, New Haven, CT, USA; 2Department of Epidemiology of Microbial Diseases, Yale School of Public Health, New Haven, CT, USA; 3Northern Illinois University, Dekalb, IL, USA; 4Department of Internal Medicine, Yale School of Medicine, New Haven, CT, USA; 5Institute of Public Health, Brown School, Washington University in St Louis, St Louis, MO, USA; 6Department of Neurology, Washington University School of Medicine, St. Louis, MO, USACorrespondence: Frank D BuonoDepartment of Psychiatry, Yale School of Medicine, 300 George Street, New Haven, CT 06510, USATel +1 203 801 3499Fax +1 203 801 3442Email frank.buono@yale.eduIntroduction: Neurofibromatosis type 1 (NF1) is a neurogenetic disorder affecting 1 in 3000 people worldwide, where individuals are prone to develop benign and malignant tumors. In addition, many people with NF1 complain of pain that limits their daily functioning. Due to the complexity of the disorder, there are few options for treating pain symptoms besides surgery and medications. Moreover, the spectrum of pain symptomatology and treatment, as well as the mechanisms underlying NF1-associated pain, has been understudied.Methodology: To address this knowledge gap, we conducted a survey of 255 adults with NF1, leveraging the Washington University NF1 Patient Registry Initiative (NPRI) database. Demographic and pain data were collected using a Qualtrics survey.Results: All participants had at least one surgical procedure, with 55% reporting having at least one surgery within the last year and 17% being currently prescribed opioid medication. A positive relationship was shown (p |
