{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,21]],"date-time":"2026-06-21T07:14:06Z","timestamp":1782026046056,"version":"3.54.5"},"reference-count":54,"publisher":"Elsevier BV","license":[{"start":{"date-parts":[[2025,1,1]],"date-time":"2025-01-01T00:00:00Z","timestamp":1735689600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2025,1,1]],"date-time":"2025-01-01T00:00:00Z","timestamp":1735689600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2025,5,11]],"date-time":"2025-05-11T00:00:00Z","timestamp":1746921600000},"content-version":"vor","delay-in-days":130,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Brain and Spine"],"published-print":{"date-parts":[[2025]]},"DOI":"10.1016\/j.bas.2025.104279","type":"journal-article","created":{"date-parts":[[2025,5,22]],"date-time":"2025-05-22T03:01:31Z","timestamp":1747882891000},"page":"104279","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":3,"special_numbering":"C","title":["Quality of life assessment in schwannomatosis \u2013 A systematic review"],"prefix":"10.1016","volume":"5","author":[{"given":"Anna C.","family":"Lawson McLean","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Steffen K.","family":"Rosahl","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5528-6905","authenticated-orcid":false,"given":"Aaron","family":"Lawson McLean","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0001-2184-4013","authenticated-orcid":false,"given":"Pascal","family":"Fehringer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anna","family":"Freier","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Denise","family":"L\u00f6schner","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marcel A.","family":"Kamp","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christian","family":"Senft","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2004-9448","authenticated-orcid":false,"given":"Andreas K.","family":"Demetriades","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"issue":"3","key":"10.1016\/j.bas.2025.104279_bib1","doi-asserted-by":"crossref","first-page":"505","DOI":"10.1177\/0194599817741839","article-title":"Voice and swallowing dysfunction in neurofibromatosis 2","volume":"158","author":"Best","year":"2018","journal-title":"Otolaryngol. Head Neck Surg."},{"key":"10.1016\/j.bas.2025.104279_bib2","doi-asserted-by":"crossref","DOI":"10.1016\/j.ctim.2020.102581","article-title":"Effects of a mind-body program on symptoms of depression and perceived stress among adults with neurofibromatosis type 2 who are deaf: a live-video randomized controlled trial","volume":"56","author":"Carter","year":"2021","journal-title":"Compl. Ther. Med."},{"issue":"4","key":"10.1016\/j.bas.2025.104279_bib3","doi-asserted-by":"crossref","first-page":"599","DOI":"10.1177\/0194599815573002","article-title":"Quality of life (QoL) assessment in patients with neurofibromatosis type 2 (NF2)","volume":"153","author":"Cosetti","year":"2015","journal-title":"Otolaryngol. Head Neck Surg."},{"issue":"2","key":"10.1016\/j.bas.2025.104279_bib4","doi-asserted-by":"crossref","first-page":"257","DOI":"10.1007\/s11060-021-03826-3","article-title":"Depression explains the association between pain intensity and pain interference among adults with neurofibromatosis","volume":"154","author":"Doorley","year":"2021","journal-title":"J. Neuro Oncol."},{"issue":"11","key":"10.1016\/j.bas.2025.104279_bib5","doi-asserted-by":"crossref","first-page":"1215","DOI":"10.1136\/jnnp-2018-318538","article-title":"Schwannomatosis: a genetic and epidemiological study","volume":"89","author":"Evans","year":"2018","journal-title":"J. Neurol. Neurosurg. Psychiatry"},{"issue":"20","key":"10.1016\/j.bas.2025.104279_bib6","first-page":"354","article-title":"The neurofibromatoses","volume":"117","author":"Farschtschi","year":"2020","journal-title":"Dtsch Arztebl Int"},{"issue":"5","key":"10.1016\/j.bas.2025.104279_bib7","doi-asserted-by":"crossref","first-page":"963","DOI":"10.1007\/s00415-014-7303-1","article-title":"Longitudinal evaluation of quality of life in 288 patients with neurofibromatosis 2","volume":"261","author":"Ferner","year":"2014","journal-title":"J. Neurol."},{"issue":"3","key":"10.1016\/j.bas.2025.104279_bib8","doi-asserted-by":"crossref","first-page":"637","DOI":"10.1007\/s11060-022-04104-6","article-title":"Baseline characteristics of adults with neurofibromatosis enrolled on a psychosocial randomized controlled trial","volume":"159","author":"Fishbein","year":"2022","journal-title":"J. Neuro Oncol."},{"issue":"1","key":"10.1016\/j.bas.2025.104279_bib9","doi-asserted-by":"crossref","first-page":"6934","DOI":"10.1038\/s41598-024-57401-7","article-title":"The impact of mental health on health-related quality of life in patients with NF2-related Schwannomatosis","volume":"14","author":"Freier","year":"2024","journal-title":"Sci. Rep."},{"issue":"3","key":"10.1016\/j.bas.2025.104279_bib10","doi-asserted-by":"crossref","first-page":"505","DOI":"10.1007\/s11060-019-03182-3","article-title":"First report of quality of life in adults with neurofibromatosis 2 who are deafened or have significant hearing loss: results of a live-video randomized control trial","volume":"143","author":"Funes","year":"2019","journal-title":"J. Neuro Oncol."},{"key":"10.1016\/j.bas.2025.104279_bib11","doi-asserted-by":"crossref","first-page":"209","DOI":"10.1007\/s11205-010-9674-8","article-title":"The importance of the geographic level of analysis in the assessment of the quality of life: the case of Spain","volume":"102","author":"Gonz\u00e1lez","year":"2011","journal-title":"Soc. Indic. Res."},{"issue":"3","key":"10.1016\/j.bas.2025.104279_bib12","doi-asserted-by":"crossref","first-page":"561","DOI":"10.1007\/s11060-019-03326-5","article-title":"Cultivating resiliency in patients with neurofibromatosis 2 who are deafened or have severe hearing loss: a live-video randomized control trial","volume":"145","author":"Greenberg","year":"2019","journal-title":"J. Neuro Oncol."},{"issue":"10","key":"10.1016\/j.bas.2025.104279_bib13","doi-asserted-by":"crossref","first-page":"657","DOI":"10.1136\/jmedgenet-2017-104519","article-title":"Genetic Severity Score predicts clinical phenotype in NF2","volume":"54","author":"Halliday","year":"2017","journal-title":"J. Med. Genet."},{"issue":"Suppl. 1","key":"10.1016\/j.bas.2025.104279_bib14","first-page":"i141","article-title":"Quality of life in patients with neurofibromatosis type 1 and 2 in Canada","volume":"2","author":"Hamoy-Jimenez","year":"2020","journal-title":"Neurooncol Adv"},{"key":"10.1016\/j.bas.2025.104279_bib15","doi-asserted-by":"crossref","first-page":"338","DOI":"10.1016\/j.jad.2016.12.012","article-title":"Psychometric evaluation of the Generalized Anxiety Disorder Screener GAD-7, based on a large German general population sample","volume":"210","author":"Hinz","year":"2017","journal-title":"J. Affect. Disord."},{"issue":"2","key":"10.1016\/j.bas.2025.104279_bib16","doi-asserted-by":"crossref","first-page":"104","DOI":"10.1055\/s-0032-1301396","article-title":"The NFTI-QOL: a disease-specific quality of life questionnaire for neurofibromatosis 2","volume":"73","author":"Hornigold","year":"2012","journal-title":"J Neurol Surg B Skull Base"},{"issue":"5","key":"10.1016\/j.bas.2025.104279_bib17","doi-asserted-by":"crossref","first-page":"632","DOI":"10.1097\/MAO.0000000000001781","article-title":"Improvement in patient-reported hearing after treatment with bevacizumab in people with neurofibromatosis type 2","volume":"39","author":"Huang","year":"2018","journal-title":"Otol. Neurotol."},{"issue":"5","key":"10.1016\/j.bas.2025.104279_bib18","article-title":"Pain correlates with germline mutation in schwannomatosis","volume":"97","author":"Jordan","year":"2018","journal-title":"Medicine (Baltim.)"},{"issue":"1","key":"10.1016\/j.bas.2025.104279_bib19","article-title":"Prospective phase II trial of the dual mTORC1\/2 inhibitor vistusertib for progressive or symptomatic meningiomas in persons with neurofibromatosis 2","volume":"5","author":"Jordan","year":"2023","journal-title":"Neurooncol Adv"},{"issue":"1","key":"10.1016\/j.bas.2025.104279_bib20","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1186\/s13023-022-02607-z","article-title":"The German version of the neurofibromatosis 2 impact on quality of life questionnaire correlates with severity of depression and physician-reported disease severity","volume":"18","author":"Lawson McLean","year":"2023","journal-title":"Orphanet J. Rare Dis."},{"issue":"1","key":"10.1016\/j.bas.2025.104279_bib21","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1093\/abm\/kaaa030","article-title":"Mind-body therapy via videoconferencing in patients with neurofibromatosis: analyses of 1-year follow-up","volume":"55","author":"Lester","year":"2021","journal-title":"Ann. Behav. Med."},{"key":"10.1016\/j.bas.2025.104279_bib22","doi-asserted-by":"crossref","DOI":"10.1016\/j.pecinn.2022.100076","article-title":"Early feasibility testing of a web-based mind-body resiliency program for adults with neurofibromatosis: the NF-Web study","volume":"1","author":"Lester","year":"2022","journal-title":"PEC Innov."},{"issue":"2","key":"10.1016\/j.bas.2025.104279_bib23","doi-asserted-by":"crossref","first-page":"365","DOI":"10.1007\/s11205-023-03073-1","article-title":"Beyond geography: social quality environments and health","volume":"166","author":"Li","year":"2023","journal-title":"Soc. Indic. Res."},{"issue":"1","key":"10.1016\/j.bas.2025.104279_bib24","doi-asserted-by":"crossref","first-page":"62","DOI":"10.3109\/00016489.2015.1079925","article-title":"Self-reported benefit, sound perception, and quality-of-life in patients with auditory brainstem implants (ABIs)","volume":"136","author":"Lundin","year":"2016","journal-title":"Acta Otolaryngol."},{"issue":"2","key":"10.1016\/j.bas.2025.104279_bib25","doi-asserted-by":"crossref","first-page":"125","DOI":"10.1007\/s11060-021-03852-1","article-title":"Psychological resiliency explains the relationship between emotional distress and quality of life in neurofibromatosis","volume":"155","author":"Mace","year":"2021","journal-title":"J. Neuro Oncol."},{"issue":"S1","key":"10.1016\/j.bas.2025.104279_bib26","first-page":"S64","article-title":"Patient health questionnaire in the general population sample - establishing the cut-off score for detecting major depression","volume":"66","author":"Maric","year":"2023","journal-title":"Eur. Psychiatry"},{"issue":"6","key":"10.1016\/j.bas.2025.104279_bib27","doi-asserted-by":"crossref","first-page":"1431","DOI":"10.1002\/ajmg.a.36466","article-title":"Relationship between whole-body tumor burden, clinical phenotype, and quality of life in patients with neurofibromatosis","volume":"164A","author":"Merker","year":"2014","journal-title":"Am. J. Med. Genet."},{"issue":"5","key":"10.1016\/j.bas.2025.104279_bib28","doi-asserted-by":"crossref","first-page":"574","DOI":"10.1097\/MAO.0000000000001019","article-title":"Health-related quality of life of individuals with neurofibromatosis type 2: results from the NF2 natural history study","volume":"37","author":"Merker","year":"2016","journal-title":"Otol. Neurotol."},{"issue":"4","key":"10.1016\/j.bas.2025.104279_bib29","doi-asserted-by":"crossref","first-page":"281","DOI":"10.1093\/nop\/npv065","article-title":"Bevacizumab in neurofibromatosis type 2 (NF2) related vestibular schwannomas: a nationally coordinated approach to delivery and prospective evaluation","volume":"3","author":"Morris","year":"2016","journal-title":"Neuro-Oncol. Pract."},{"key":"10.1016\/j.bas.2025.104279_bib30","doi-asserted-by":"crossref","DOI":"10.1177\/20503121221118996","article-title":"Reliability of functional outcome measures in adults with neurofibromatosis 2","volume":"10","author":"Mullin","year":"2022","journal-title":"SAGE Open Med."},{"issue":"4","key":"10.1016\/j.bas.2025.104279_bib31","doi-asserted-by":"crossref","first-page":"291","DOI":"10.1111\/j.1749-4486.2010.02176.x","article-title":"The relationship between patients' perception of the effects of neurofibromatosis type 2 and the domains of the Short Form-36","volume":"35","author":"Neary","year":"2010","journal-title":"Clin. Otolaryngol."},{"key":"10.1016\/j.bas.2025.104279_bib32","series-title":"Health at a Glance 2023: OECD Indicators","year":"2023"},{"issue":"5","key":"10.1016\/j.bas.2025.104279_bib33","doi-asserted-by":"crossref","first-page":"1233","DOI":"10.1007\/s11136-023-03596-7","article-title":"Minimal clinically important difference in the world health organization quality of life brief (WHOQOL-BREF) for adults with neurofibromatosis","volume":"33","author":"Pietrzykowski","year":"2024","journal-title":"Qual. Life Res."},{"issue":"35","key":"10.1016\/j.bas.2025.104279_bib34","doi-asserted-by":"crossref","first-page":"3446","DOI":"10.1200\/JCO.19.01367","article-title":"Multicenter, prospective, phase II and biomarker study of high-dose bevacizumab as induction therapy in patients with neurofibromatosis type 2 and progressive vestibular schwannoma","volume":"37","author":"Plotkin","year":"2019","journal-title":"J. Clin. Oncol."},{"issue":"9","key":"10.1016\/j.bas.2025.104279_bib35","doi-asserted-by":"crossref","first-page":"1967","DOI":"10.1016\/j.gim.2022.05.007","article-title":"Updated diagnostic criteria and nomenclature for neurofibromatosis type 2 and schwannomatosis: an international consensus recommendation","volume":"24","author":"Plotkin","year":"2022","journal-title":"Genet. Med."},{"issue":"8","key":"10.1016\/j.bas.2025.104279_bib36","doi-asserted-by":"crossref","first-page":"1498","DOI":"10.1093\/neuonc\/noad066","article-title":"Multicenter, prospective, phase II study of maintenance bevacizumab for children and adults with NF2-related schwannomatosis and progressive vestibular schwannoma","volume":"25","author":"Plotkin","year":"2023","journal-title":"Neuro Oncol."},{"issue":"24","key":"10.1016\/j.bas.2025.104279_bib37","doi-asserted-by":"crossref","first-page":"2284","DOI":"10.1056\/NEJMoa2400985","article-title":"Brigatinib in NF2-related schwannomatosis with progressive tumors","volume":"390","author":"Plotkin","year":"2024","journal-title":"N. Engl. J. Med."},{"issue":"3","key":"10.1016\/j.bas.2025.104279_bib38","doi-asserted-by":"crossref","first-page":"707","DOI":"10.1007\/s11060-023-04389-1","article-title":"The impact of a virtual mind-body program on resilience factors among international English-speaking adults with neurofibromatoses: secondary analysis of a randomized clinical trial","volume":"163","author":"Presciutti","year":"2023","journal-title":"J. Neuro Oncol."},{"issue":"3","key":"10.1016\/j.bas.2025.104279_bib39","doi-asserted-by":"crossref","first-page":"390","DOI":"10.1001\/archderm.1989.01670150080013","article-title":"Schwannomatosis. An unusual variant of neurofibromatosis or a distinct clinical entity?","volume":"125","author":"Purcell","year":"1989","journal-title":"Arch. Dermatol."},{"issue":"7","key":"10.1016\/j.bas.2025.104279_bib40","doi-asserted-by":"crossref","first-page":"1583","DOI":"10.1002\/pon.5099","article-title":"Screening and intervening: psychological distress in neurofibromatosis type 2 (NF2)","volume":"28","author":"Quarmby","year":"2019","journal-title":"Psychooncology"},{"issue":"3","key":"10.1016\/j.bas.2025.104279_bib41","doi-asserted-by":"crossref","first-page":"671","DOI":"10.1002\/ajmg.a.38079","article-title":"First report of factors associated with satisfaction in patients with neurofibromatosis","volume":"173","author":"Riklin","year":"2017","journal-title":"Am. J. Med. Genet."},{"issue":"1","key":"10.1016\/j.bas.2025.104279_bib42","doi-asserted-by":"crossref","first-page":"118","DOI":"10.1097\/MAO.0000000000001230","article-title":"Tinnitus suppression after auditory brainstem implantation in patients with neurofibromatosis type-2","volume":"38","author":"Roberts","year":"2017","journal-title":"Otol. Neurotol."},{"issue":"1","key":"10.1016\/j.bas.2025.104279_bib43","doi-asserted-by":"crossref","first-page":"123","DOI":"10.1186\/s12883-019-1338-y","article-title":"Evaluation of QoL in neurofibromatosis patients: a systematic review and meta-analysis study","volume":"19","author":"Sanagoo","year":"2019","journal-title":"BMC Neurol."},{"issue":"4","key":"10.1016\/j.bas.2025.104279_bib44","doi-asserted-by":"crossref","first-page":"322","DOI":"10.1212\/CPJ.0000000000000648","article-title":"Association between patient-reported outcomes and objective disease indices in people with NF2","volume":"9","author":"Shukla","year":"2019","journal-title":"Neurol Clin Pract"},{"issue":"1","key":"10.1016\/j.bas.2025.104279_bib45","doi-asserted-by":"crossref","first-page":"87","DOI":"10.1212\/WNL.0000000000003418","article-title":"Revisiting neurofibromatosis type 2 diagnostic criteria to exclude LZTR1-related schwannomatosis","volume":"88","author":"Smith","year":"2017","journal-title":"Neurology"},{"issue":"2","key":"10.1016\/j.bas.2025.104279_bib46","doi-asserted-by":"crossref","first-page":"413","DOI":"10.1007\/s11060-016-2314-7","article-title":"First use of patient reported outcomes measurement information system (PROMIS) measures in adults with neurofibromatosis","volume":"131","author":"Talaei-Khoei","year":"2017","journal-title":"J. Neuro Oncol."},{"issue":"3","key":"10.1016\/j.bas.2025.104279_bib47","doi-asserted-by":"crossref","first-page":"257","DOI":"10.1007\/s11060-013-1195-2","article-title":"Quality of life among adult patients with neurofibromatosis 1, neurofibromatosis 2 and schwannomatosis: a systematic review of the literature","volume":"114","author":"Vranceanu","year":"2013","journal-title":"J. Neuro Oncol."},{"issue":"1","key":"10.1016\/j.bas.2025.104279_bib48","doi-asserted-by":"crossref","first-page":"103","DOI":"10.1007\/s11060-014-1522-2","article-title":"The relaxation response resiliency program (3RP) in patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis: results from a pilot study","volume":"120","author":"Vranceanu","year":"2014","journal-title":"J. Neuro Oncol."},{"issue":"8","key":"10.1016\/j.bas.2025.104279_bib49","doi-asserted-by":"crossref","first-page":"806","DOI":"10.1212\/WNL.0000000000003005","article-title":"Mind-body therapy via videoconferencing in patients with neurofibromatosis: an RCT","volume":"87","author":"Vranceanu","year":"2016","journal-title":"Neurology"},{"issue":"6","key":"10.1016\/j.bas.2025.104279_bib50","doi-asserted-by":"crossref","DOI":"10.1001\/jamanetworkopen.2023.20599","article-title":"Effect of mind-body skills training on quality of life for geographically diverse adults with neurofibromatosis: a fully remote randomized clinical trial","volume":"6","author":"Vranceanu","year":"2023","journal-title":"JAMA Netw. Open"},{"key":"10.1016\/j.bas.2025.104279_bib51","first-page":"393","article-title":"Case of tumours in the skull, dura mater, and brain","volume":"18","author":"Wishart","year":"1822","journal-title":"Edinburgh Med Surg J"},{"issue":"7 Suppl. 1","key":"10.1016\/j.bas.2025.104279_bib52","first-page":"S50","article-title":"Current recommendations for patient-reported outcome measures assessing domains of quality of life in neurofibromatosis clinical trials","volume":"97","author":"Wolters","year":"2021","journal-title":"Neurology"},{"issue":"1","key":"10.1016\/j.bas.2025.104279_bib53","doi-asserted-by":"crossref","first-page":"73","DOI":"10.1177\/17407745231209224","article-title":"Perspectives of adults with neurofibromatosis regarding the design of psychosocial trials: results from an anonymous online survey","volume":"21","author":"Wolters","year":"2024","journal-title":"Clin. Trials"},{"key":"10.1016\/j.bas.2025.104279_bib54","doi-asserted-by":"crossref","first-page":"44","DOI":"10.1265\/ehpm.24-00158","article-title":"Quality of life and neurological symptoms in patients with neurofibromatosis type 2: a national database study in Japan","volume":"29","author":"Yamauchi","year":"2024","journal-title":"Environ. Health Prev. Med."}],"container-title":["Brain and Spine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S2772529425000980?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S2772529425000980?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2026,3,2]],"date-time":"2026-03-02T17:00:58Z","timestamp":1772470858000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S2772529425000980"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025]]},"references-count":54,"alternative-id":["S2772529425000980"],"URL":"https:\/\/doi.org\/10.1016\/j.bas.2025.104279","relation":{},"ISSN":["2772-5294"],"issn-type":[{"value":"2772-5294","type":"print"}],"subject":[],"published":{"date-parts":[[2025]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Quality of life assessment in schwannomatosis \u2013 A systematic review","name":"articletitle","label":"Article Title"},{"value":"Brain and Spine","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.bas.2025.104279","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2025 The Authors. Published by Elsevier B.V. on behalf of EUROSPINE, the Spine Society of Europe, EANS, the European Association of Neurosurgical Societies.","name":"copyright","label":"Copyright"}],"article-number":"104279"}}