(210) - Understanding pain management strategies within individuals with neuropfibromatosis

Abstract

Neurofibromatosis Type 1 is an autosomal dominant disease affecting 1 in 3500 individuals. This disease typically presents with plexiform neurofibroma tumors, café au lait mascules, dermal neurofibromas, optic pathway gliomas, and malignant peripheral nerve sheath tumors. The onset of these tumors usually manifests at adolescence, and often produces significant pain and discomfort. Moreover, the limited treatment options, e.g. surgery or opioid medications, can increase pain severity and/or interference. To date, little research has been published evaluating pain symptomology for individuals diagnosed with NF1. In collaboration with the department of Medicine and Public Health at Washington university in St. Louis, Missouri, in June 2017, we recruited individuals from the NF1 Patient Registry Initiative (NPRI, N = 800) through an email solicitation to complete an on-line survey. The survey included items on demographics, medical history, pain characteristics and treatment including medications and alternative and complementary treatments, and substance use. 241 individuals completed the survey of 263 for a response rate of 33%. The Brief Pain Inventory Short Form (BPI-SF) was used to assess pain severity and interference on a scale from 0 to 10. Mean pain interference was 4.87(SD = 2.71) and mean pain severity was 4.6 (SD = 2.24). These findings demonstrate that individuals with NF1 have similar pain scores as prostate and persistent cancer pain patients. Furthermore, most participants reported only using pain medication or surgery (65%). Use of complementary and alternative treatment was rare ranging from 2% for occupational therapy to 20% for massage. Additionally, 9% reported tobacco use, 15% reported using marijuana in the last 30 days, and 3% reported illicit drug use. These preliminary findings reinforce the need to provide more evidence based therapeutic applications for individuals suffering with NF1, while educating individuals about the alternative options for management of chronic pain due to their NF1 symptoms.