{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,30]],"date-time":"2026-04-30T10:12:20Z","timestamp":1777543940774,"version":"3.51.4"},"reference-count":45,"publisher":"SAGE Publications","issue":"1","license":[{"start":{"date-parts":[[2024,2,1]],"date-time":"2024-02-01T00:00:00Z","timestamp":1706745600000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100001545","name":"Children\u2019s Tumor Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100001545","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Clinical Trials"],"published-print":{"date-parts":[[2024,2]]},"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Neurofibromatosis type 2\u2013related schwannomatosis is a genetic disease characterized by the development of bilateral vestibular schwannomas, ependymomas, meningiomas, and cataracts. Mild to profound hearing loss and tinnitus are common symptoms reported by individuals with neurofibromatosis type 2. While tinnitus is known to have a significant and negative impact on the quality of life of individuals from the general population, the impact on individuals with neurofibromatosis type 2 is unknown. Consensus regarding the selection of suitable patient-reported outcome measures for assessment could advance further research into tinnitus in neurofibromatosis type 2 patients. The purpose of this work is to achieve a consensus recommendation by the Response Evaluation in Neurofibromatosis and Schwannomatosis International Collaboration for patient-reported outcome measures used to evaluate quality of life in the domain of tinnitus for neurofibromatosis type 2 clinical trials.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>The Response Evaluation in Neurofibromatosis and Schwannomatosis Patient-Reported Outcomes Communication Subgroup systematically evaluated patient-reported outcome measures of quality of life in the domain of tinnitus for individuals with neurofibromatosis type 2 using previously published Response Evaluation in Neurofibromatosis and Schwannomatosis rating procedures. Of the 19 identified patient-reported outcome measures, 3 measures were excluded because they were not validated as an outcome measure or could not have been used as a single outcome measure for a clinical trial. Sixteen published patient-reported outcome measures for the domain of tinnitus were scored and compared on their participant characteristics, item content, psychometric properties, and feasibility for use in clinical trials.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The Tinnitus Functional Index was identified as the most highly rated measure for the assessment of tinnitus in populations with neurofibromatosis type 2, due to strengths in the areas of item content, psychometric properties, feasibility, and available scores.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>Response Evaluation in Neurofibromatosis and Schwannomatosis currently recommends the Tinnitus Functional Index for the assessment of tinnitus in neurofibromatosis type 2 clinical trials.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/17407745231217279","type":"journal-article","created":{"date-parts":[[2024,2,7]],"date-time":"2024-02-07T00:58:13Z","timestamp":1707267493000},"page":"18-28","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":1,"title":["Patient-reported measures of tinnitus for individuals with neurofibromatosis type 2\u2013related schwannomatosis: Recommendations for clinical trials"],"prefix":"10.1177","volume":"21","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4205-239X","authenticated-orcid":false,"given":"Heather L","family":"Thompson","sequence":"first","affiliation":[{"name":"Department of Communication Sciences and Disorders, California State University, Sacramento, Sacramento, CA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jane","family":"Grabowski","sequence":"additional","affiliation":[{"name":"Mimi Hearing Technologies, Charit\u00e9, Universit\u00e4tsmedizin Berlin, Berlin, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Barbara","family":"Franklin","sequence":"additional","affiliation":[{"name":"REiNS Patient Representative for NF2, New York, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2918-4750","authenticated-orcid":false,"given":"Kimberley S","family":"Koetsier","sequence":"additional","affiliation":[{"name":"Otorhinolaryngology and Head & Neck Surgery, Leiden University Medical Center, Leiden, The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"D Bradley","family":"Welling","sequence":"additional","affiliation":[{"name":"Harvard Department of Otolaryngology\u2013Head and Neck Surgery, Massachusetts Eye and Ear Infirmary and Massachusetts General Hospital, Boston, MA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2024,2,6]]},"reference":[{"key":"bibr1-17407745231217279","doi-asserted-by":"publisher","DOI":"10.1038\/363515a0"},{"key":"bibr2-17407745231217279","doi-asserted-by":"publisher","DOI":"10.1016\/0092-8674(93)90406-G"},{"key":"bibr3-17407745231217279","doi-asserted-by":"publisher","DOI":"10.1016\/j.gim.2022.05.007"},{"key":"bibr4-17407745231217279","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(09)60259-2"},{"key":"bibr5-17407745231217279","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.1320520411"},{"key":"bibr6-17407745231217279","unstructured":"American Academy of Audiology, https:\/\/www.audiology.org\/consumers-and-patients\/hearing-and-balance\/tinnitus\/ (accessed 9 January 2023)."},{"key":"bibr7-17407745231217279","doi-asserted-by":"publisher","DOI":"10.1001\/jamaoto.2016.1700"},{"key":"bibr8-17407745231217279","first-page":"603","volume":"84","author":"Evans DGR","year":"1992","journal-title":"Q J Med"},{"key":"bibr9-17407745231217279","doi-asserted-by":"publisher","DOI":"10.1016\/S0385-8146(00)00093-6"},{"key":"bibr10-17407745231217279","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.19.01367"},{"key":"bibr11-17407745231217279","doi-asserted-by":"publisher","DOI":"10.3109\/00206099209072912"},{"key":"bibr12-17407745231217279","doi-asserted-by":"publisher","DOI":"10.5935\/0946-5448.20210015"},{"key":"bibr13-17407745231217279","doi-asserted-by":"publisher","DOI":"10.3389\/fneur.2019.00389"},{"key":"bibr14-17407745231217279","volume-title":"Acoustic neuroma","author":"Greene J","year":"2023"},{"key":"bibr15-17407745231217279","unstructured":"U.S. Department of Health and Human Services FaDA. 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