Substantial Pain Burden in Frequency, Intensity, Interference and Chronicity among Children and Adults with Neurofibromatosis Type 1
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University of Cincinnati / OhioLINK
2017
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ndltd-OhioLink-oai-etd.ohiolink.edu-ucin14912263404292012021-08-03T07:01:10Z Substantial Pain Burden in Frequency, Intensity, Interference and Chronicity among Children and Adults with Neurofibromatosis Type 1 Kongkriangkai, Alanna M., B.S. Genetics neurofibromatosis 1 RASopathy pain chronic pain neuropathic pain pain interference ObjectiveTumor growths, bone deformities, migraine headaches and other health-related complications reported in patients with neurofibromatosis type 1 (NF1) are often associated with substantial pain. However, due to the lack of systematic studies investigating the features of the pain experience, information in the literature regarding pain interference, intensity, chronicity, frequency, and pain characteristics in the NF1 population is limited. Thus, the current study sought to describe and quantify the pain experience in children and adults with NF1. MethodsA cross-sectional study was conducted via validated and supplemental surveys, administered to children and adults between the ages of 8 and 40, at the following locations: Neurofibromatosis (NF) clinic at Cincinnati Children’s Hospital Medical Center (CCHMC), CCHMC general genetics clinics, the adult NF clinic at University Hospital, and the annual NF Symposium held at CCHMC. Validated questionnaires include the Numeric Rating Scale 11 (NRS11) to assess pain intensity and the Patient Reported Outcomes Measurement Information System (PROMIS) to assess pain interference. Additionally, we created a supplemental survey to measure pain frequency, chronicity, quality, and location.ResultsA total of 49 participants (28 children and 21 adults) with NF1 participated in the study. Pain was present in 55% of participants (46% of children and 67% of adults), and can begin at an early age (i.e. as young as 8 years old). Further, 35% of individuals describe their pain to be chronic in nature (25% of children and 48% of adults) with 41% of participants reporting the need to take over-the-counter and/or prescription medication to manage their pain symptoms. The most commonly identified sources of pain included migraine headaches (31%) and NF-related tumors (27%). Pain was often described as neuropathic (burning, tingling, numbness, or itching), which was localized to the head, back, and extremities. Patients were also likely to report high levels of pain intensity, frequency, and interference. Age-related differences among patients with NF1 were observed in the frequency and multisite presentation of pain.ConclusionIn response to the many health and pain-related implications associated with a multisystem disorder such as NF1, we aimed to fill the gap for this community by describing the pain experience in children and adults, such that clinicians, providers, pain specialist, and patients alike are able to recognize and manage symptoms of pain, specifically as it relates to NF1. 2017-09-29 English text University of Cincinnati / OhioLINK http://rave.ohiolink.edu/etdc/view?acc_num=ucin1491226340429201 http://rave.ohiolink.edu/etdc/view?acc_num=ucin1491226340429201 unrestricted This thesis or dissertation is protected by copyright: all rights reserved. It may not be copied or redistributed beyond the terms of applicable copyright laws. |
| collection |
NDLTD |
| language |
English |
| sources |
NDLTD |
| topic |
Genetics neurofibromatosis 1 RASopathy pain chronic pain neuropathic pain pain interference |
| spellingShingle |
Genetics neurofibromatosis 1 RASopathy pain chronic pain neuropathic pain pain interference Kongkriangkai, Alanna M., B.S. Substantial Pain Burden in Frequency, Intensity, Interference and Chronicity among Children and Adults with Neurofibromatosis Type 1 |
| author |
Kongkriangkai, Alanna M., B.S. |
| author_facet |
Kongkriangkai, Alanna M., B.S. |
| author_sort |
Kongkriangkai, Alanna M., B.S. |
| title |
Substantial Pain Burden in Frequency, Intensity, Interference and Chronicity among Children and Adults with Neurofibromatosis Type 1 |
| title_short |
Substantial Pain Burden in Frequency, Intensity, Interference and Chronicity among Children and Adults with Neurofibromatosis Type 1 |
| title_full |
Substantial Pain Burden in Frequency, Intensity, Interference and Chronicity among Children and Adults with Neurofibromatosis Type 1 |
| title_fullStr |
Substantial Pain Burden in Frequency, Intensity, Interference and Chronicity among Children and Adults with Neurofibromatosis Type 1 |
| title_full_unstemmed |
Substantial Pain Burden in Frequency, Intensity, Interference and Chronicity among Children and Adults with Neurofibromatosis Type 1 |
| title_sort |
substantial pain burden in frequency, intensity, interference and chronicity among children and adults with neurofibromatosis type 1 |
| publisher |
University of Cincinnati / OhioLINK |
| publishDate |
2017 |
| url |
http://rave.ohiolink.edu/etdc/view?acc_num=ucin1491226340429201 |
| work_keys_str_mv |
AT kongkriangkaialannambs substantialpainburdeninfrequencyintensityinterferenceandchronicityamongchildrenandadultswithneurofibromatosistype1 |
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1719452080106635264 |