{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,27]],"date-time":"2026-10-27T17:08:52Z","timestamp":1793120932986,"version":"4.5.0"},"reference-count":61,"publisher":"MDPI AG","issue":"15","license":[{"start":{"date-parts":[[2023,7,31]],"date-time":"2023-07-31T00:00:00Z","timestamp":1690761600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Friedrich-Baur-Foundation, Burgkunstadt","award":["491183248"],"award-info":[{"award-number":["491183248"]}]},{"name":"Deutsche Forschungsgemeinschaft","award":["491183248"],"award-info":[{"award-number":["491183248"]}]},{"name":"University of Bayreuth","award":["491183248"],"award-info":[{"award-number":["491183248"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JCM"],"abstract":"<jats:p>Inclusion body myositis (IBM) is a rare neuromuscular disease and the most prevalent idiopathic inflammatory myopathy (IIM) in patients aged older than 50 years. A systematic review has shown that no clear-cut conclusions can be drawn about the health-related quality of life (HRQoL) and mental health in IBM. We aimed to assess the HRQoL and mental health, to explore associated disease-related and socioeconomic factors as well as the utilization of psychological support in German IBM patients. This cross-sectional study included 82 patients registered in the German IBM patient registry. Patients had completed a survey battery including the EQ-5D-5L, the Individualized Neuromuscular Quality of Life (INQoL) and the Hospital Anxiety and Depression Scale German version (HADS-D). The physical HRQoL dimension was suggested to be most relevant. Most impaired life domains of HRQoL were mobility, independence, and activities. We identified significant differences in the total INQoL score for the degree of disability and care level as well as in depression for the degree of disability (p &lt; 0.05), respectively. Most patients indicated no symptoms of anxiety (64.6%) and depression (62.2%). A more need-oriented psychological support in German IBM patients, reporting doubtful or definite anxiety or depression, could be suggested.<\/jats:p>","DOI":"10.3390\/jcm12155051","type":"journal-article","created":{"date-parts":[[2023,8,1]],"date-time":"2023-08-01T09:24:24Z","timestamp":1690881864000},"page":"5051","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Patient-Reported Health-Related Quality of Life, Anxiety and Depression in Patients with Inclusion Body Myositis: A Register-Based Cross-Sectional Study in Germany"],"prefix":"10.3390","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6915-5201","authenticated-orcid":false,"given":"Katja C.","family":"Senn","sequence":"first","affiliation":[{"name":"Chair of Healthcare Management and Health Services Research, University of Bayreuth, Parsifalstrasse 25, 95445 Bayreuth, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Simone","family":"Thiele","sequence":"additional","affiliation":[{"name":"Friedrich Baur Institute at the Department of Neurology, LMU University Hospital, LMU Munich, Ziemssenstrasse 1, 80336 Munich, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karsten","family":"Kummer","sequence":"additional","affiliation":[{"name":"Department of Neurology, University Medical Center Goettingen, 37075 Goettingen, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maggie C.","family":"Walter","sequence":"additional","affiliation":[{"name":"Friedrich Baur Institute at the Department of Neurology, LMU University Hospital, LMU Munich, Ziemssenstrasse 1, 80336 Munich, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Klaus H.","family":"Nagels","sequence":"additional","affiliation":[{"name":"Chair of Healthcare Management and Health Services Research, University of Bayreuth, Parsifalstrasse 25, 95445 Bayreuth, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2023,7,31]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"1350","DOI":"10.1016\/j.jocn.2008.01.011","article-title":"Prevalence of sporadic inclusion body myositis and factors contributing to delayed diagnosis","volume":"15","author":"Needham","year":"2008","journal-title":"J. Clin. Neurosci."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"50","DOI":"10.1093\/rheumatology\/keu289","article-title":"Incidence and prevalence of inflammatory myopathies: A systematic review","volume":"54","author":"Meyer","year":"2015","journal-title":"Rheumatology"},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"127","DOI":"10.3233\/JND-160198","article-title":"A Systematic Review and Meta-Analysis of Prevalence Studies of Sporadic Inclusion Body Myositis","volume":"4","author":"Callan","year":"2017","journal-title":"J. Neuromuscul. Dis."},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"1125","DOI":"10.1586\/1744666X.2013.842467","article-title":"Inclusion body myositis: From immunopathology and degenerative mechanisms to treatment perspectives","volume":"9","author":"Schmidt","year":"2013","journal-title":"Expert Rev. Clin. Immunol."},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"1044","DOI":"10.1016\/j.nmd.2013.08.007","article-title":"188th ENMC international workshop: Inclusion body myositis, 2\u20134 December 2011, Naarden, The Netherlands","volume":"23","author":"Rose","year":"2013","journal-title":"Neuromuscul. Disord."},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"1526","DOI":"10.1002\/mus.1178","article-title":"Patterns of muscle involvement in inclusion body myositis: Clinical and magnetic resonance imaging study","volume":"24","author":"Phillips","year":"2001","journal-title":"Muscle Nerve"},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"1448","DOI":"10.1007\/s00415-005-0884-y","article-title":"Inclusion body myositis. Clinical features and clinical course of the disease in 64 patients","volume":"252","author":"Badrising","year":"2005","journal-title":"J. Neurol."},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"727","DOI":"10.1093\/brain\/112.3.727","article-title":"Inclusion body myositis. Observations in 40 patients","volume":"112","author":"Lotz","year":"1989","journal-title":"Brain"},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"526","DOI":"10.1002\/mus.25373","article-title":"Modeling functional decline over time in sporadic inclusion body myositis","volume":"55","author":"Alfano","year":"2017","journal-title":"Muscle Nerve"},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"2009","DOI":"10.1007\/s00415-009-5229-9","article-title":"Detecting dysphagia in inclusion body myositis","volume":"256","author":"Cox","year":"2009","journal-title":"J. Neurol."},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"441","DOI":"10.4065\/82.4.441","article-title":"Dysphagia in inflammatory myopathy: Clinical characteristics, treatment strategies, and outcome in 62 patients","volume":"82","author":"Oh","year":"2007","journal-title":"Mayo Clin. Proc."},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"3167","DOI":"10.1093\/brain\/awr217","article-title":"A 12-year follow-up in sporadic inclusion body myositis: An end stage with major disabilities","volume":"134","author":"Cox","year":"2011","journal-title":"Brain"},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"3176","DOI":"10.1093\/brain\/awr213","article-title":"Long-term observational study of sporadic inclusion body myositis","volume":"134","author":"Benveniste","year":"2011","journal-title":"Brain"},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"1020113","DOI":"10.3389\/fneur.2022.1020113","article-title":"Inclusion body myositis: Update on the diagnostic and therapeutic landscape","volume":"13","author":"Naddaf","year":"2022","journal-title":"Front. Neurol."},{"key":"ref_15","unstructured":"(2023, April 11). Myositissyndrome, S2k-Leitlinie: Leitlinien f\u00fcr Diagnostik und Therapie in der Neurologie. Available online: www.dgn.org\/leitlinien."},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"61","DOI":"10.1016\/j.physio.2013.06.002","article-title":"Frequency and circumstances of falls in people with inclusion body myositis: A questionnaire survey to explore falls management and physiotherapy provision","volume":"100","author":"Hiscock","year":"2014","journal-title":"Physiotherapy"},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"227","DOI":"10.1186\/s13023-022-02382-x","article-title":"The health-related quality of life, mental health and mental illnesses of patients with inclusion body myositis (IBM): Results of a mixed methods systematic review","volume":"17","author":"Senn","year":"2022","journal-title":"Orphanet J. Rare Dis."},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"9","DOI":"10.1002\/mus.23245","article-title":"Quality of life and measures of quality of life in patients with neuromuscular disorders","volume":"46","author":"Burns","year":"2012","journal-title":"Muscle Nerve"},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"1581","DOI":"10.1007\/s00415-011-6062-5","article-title":"A systematic review of quality of life in adults with muscle disease","volume":"258","author":"Graham","year":"2011","journal-title":"J. Neurol."},{"key":"ref_20","doi-asserted-by":"crossref","unstructured":"S\u00e1nchez-Garc\u00eda, J.C., Cort\u00e9s-Mart\u00edn, J., Rodr\u00edguez-Blanque, R., Mar\u00edn-Jim\u00e9nez, A.E., Montiel-Troya, M., and D\u00edaz-Rodr\u00edguez, L. (2021). Depression and Anxiety in Patients with Rare Diseases during the COVID-19 Pandemic. Int. J. Environ. Res. Public Health, 18.","DOI":"10.3390\/ijerph18063234"},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1038\/s44184-022-00001-y","article-title":"The cost of mental disorders in Denmark: A register-based study","volume":"1","author":"Christensen","year":"2022","journal-title":"NPJ Ment. Health Res."},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"1947","DOI":"10.2147\/CIA.S69632","article-title":"Depression and frailty in later life: A systematic review","volume":"10","author":"Vaughan","year":"2015","journal-title":"Clin. Interv. Aging"},{"key":"ref_23","doi-asserted-by":"crossref","first-page":"128","DOI":"10.1007\/s00103-018-2867-z","article-title":"Versorgungsepidemiologie psychischer St\u00f6rungen: Warum sinken die Pr\u00e4valenzen trotz vermehrter Versorgungsangebote nicht ab?","volume":"62","author":"Thom","year":"2019","journal-title":"Bundesgesundheitsbl"},{"key":"ref_24","doi-asserted-by":"crossref","first-page":"426","DOI":"10.1212\/WNL.0000000000000642","article-title":"Evaluation and construction of diagnostic criteria for inclusion body myositis","volume":"83","author":"Lloyd","year":"2014","journal-title":"Neurology"},{"key":"ref_25","doi-asserted-by":"crossref","first-page":"653","DOI":"10.1002\/mus.25079","article-title":"Development of the sporadic inclusion body myositis physical functioning assessment","volume":"54","author":"DeMuro","year":"2016","journal-title":"Muscle Nerve"},{"key":"ref_26","doi-asserted-by":"crossref","first-page":"303","DOI":"10.1007\/s00132-012-1901-3","article-title":"Komorbidit\u00e4t im Patientenurteil\u2014Geht das? Validit\u00e4t eines Instruments zur Selbsteinsch\u00e4tzung der Komorbidit\u00e4t (SCQ-D)","volume":"41","author":"Streibelt","year":"2012","journal-title":"Orthopade"},{"key":"ref_27","doi-asserted-by":"crossref","first-page":"156","DOI":"10.1002\/art.10993","article-title":"The Self-Administered Comorbidity Questionnaire: A new method to assess comorbidity for clinical and health services research","volume":"49","author":"Sangha","year":"2003","journal-title":"Arthritis Rheum."},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"969","DOI":"10.1007\/s00106-021-01000-9","article-title":"Der deutsche Sydney Swallow Questionnaire","volume":"69","author":"Bohlender","year":"2021","journal-title":"HNO"},{"key":"ref_29","doi-asserted-by":"crossref","first-page":"535","DOI":"10.1007\/s00455-014-9541-x","article-title":"The normative range for and age and gender effects on the Sydney Swallow Questionnaire (SSQ)","volume":"29","author":"Szczesniak","year":"2014","journal-title":"Dysphagia"},{"key":"ref_30","first-page":"678","article-title":"Development and validation of a self-report symptom inventory to assess the severity of oral-pharyngeal dysphagia","volume":"118","author":"Wallace","year":"2000","journal-title":"J. Gastroenterol."},{"key":"ref_31","doi-asserted-by":"crossref","first-page":"130","DOI":"10.1007\/s00455-020-10114-1","article-title":"Validation of the German Version of Functional Oral Intake Scale (FOIS-G) for Flexible Endoscopic Evaluation of Swallowing (FEES)","volume":"36","author":"Hamzic","year":"2021","journal-title":"Dysphagia"},{"key":"ref_32","unstructured":"(2023, April 11). EQ-5D-5L User Guide: Basic Information on How to Use the EQ-5D-5L Instrument. Available online: https:\/\/euroqol.org\/publications\/user-guides\/."},{"key":"ref_33","doi-asserted-by":"crossref","first-page":"663","DOI":"10.1007\/s40273-018-0615-8","article-title":"German Value Set for the EQ-5D-5L","volume":"36","author":"Ludwig","year":"2018","journal-title":"Pharmacoeconomics"},{"key":"ref_34","doi-asserted-by":"crossref","first-page":"1051","DOI":"10.1212\/01.wnl.0000257819.47628.41","article-title":"Construction and validation of a quality of life questionnaire for neuromuscular disease (INQoL)","volume":"68","author":"Vincent","year":"2007","journal-title":"Neurology"},{"key":"ref_35","unstructured":"Herrmann-Lingen, C., Buss, U., and Snaith, R.P. (2018). Hospital Anxiety and Depression Scale, Deutsche Version (HADS-D), Hogrefe. [4th ed.]."},{"key":"ref_36","unstructured":"(2023, April 11). Anzahl der Mitglieder und Versicherten der Gesetzlichen und Privaten Krankenversicherung in den Jahren 2016 bis 2022. Available online: https:\/\/de.statista.com\/statistik\/daten\/studie\/155823\/umfrage\/gkv-pkv-mitglieder-und-versichertenzahl-im-vergleich\/."},{"key":"ref_37","unstructured":"Statistische \u00c4mter des Bundes und der L\u00e4nder (2021). Internationale Bildungsindikatoren im L\u00e4ndervergleich, Ausgabe 2021, Statistische \u00c4mter des Bundes und der L\u00e4nder."},{"key":"ref_38","unstructured":"UNESCO Institute for Statistics (2012). International Standard Classification of Education (ISCED) 2011, UNESCO Institute for Statistics."},{"key":"ref_39","unstructured":"Das Elfte Buch Sozialgesetzbuch (SGB XI)\u2014Soziale Pflegeversicherung\u2014Art. 1 des Gesetzes vom 26. Mai 1994, BGBl. I S. 1014, 1015), das zuletzt durch 7e des Gesetzes vom 27. September 2021 (BGBl. I S. 4530) ge\u00e4ndert worden ist."},{"key":"ref_40","unstructured":"Das Neunte Buch Sozialgesetzbuch (SGB IX)\u2014Gesetzliche Krankenversicherung\u2014Vom 23. Dezember 2016 (BGBl. I S. 3234), das zuletzt durch Artikel 7c des Gesetzes vom 27. September 2021 (BGBl. I S. 4530) ge\u00e4ndert worden ist."},{"key":"ref_41","doi-asserted-by":"crossref","unstructured":"Leclair, V., Regardt, M., Wojcik, S., and Hudson, M. (2016). Health-Related Quality of Life (HRQoL) in Idiopathic Inflammatory Myopathy: A Systematic Review. PLoS ONE, 11.","DOI":"10.1371\/journal.pone.0160753"},{"key":"ref_42","doi-asserted-by":"crossref","first-page":"2040622318821622","DOI":"10.1177\/2040622318821622","article-title":"Screening and evaluation tools of dysphagia in adults with neuromuscular diseases: A systematic review","volume":"10","author":"Audag","year":"2019","journal-title":"Ther. Adv. Chronic Dis."},{"key":"ref_43","doi-asserted-by":"crossref","first-page":"2132","DOI":"10.1212\/WNL.0000000000003337","article-title":"Evaluation of dysphagia by novel real-time MRI","volume":"87","author":"Olthoff","year":"2016","journal-title":"Neurology"},{"key":"ref_44","doi-asserted-by":"crossref","first-page":"351","DOI":"10.1002\/mus.23320","article-title":"Role of disease severity, illness perceptions, and mood on quality of life in muscle disease","volume":"46","author":"Rose","year":"2012","journal-title":"Muscle Nerve"},{"key":"ref_45","doi-asserted-by":"crossref","first-page":"373","DOI":"10.1136\/jnnp-2014-310008","article-title":"Seropositivity for NT5c1A antibody in sporadic inclusion body myositis predicts more severe motor, bulbar and respiratory involvement","volume":"87","author":"Goyal","year":"2016","journal-title":"J. Neurol. Neurosurg. Psychiatry"},{"key":"ref_46","doi-asserted-by":"crossref","first-page":"159","DOI":"10.1016\/j.healthpol.2018.12.003","article-title":"Health related quality of life aspects not captured by EQ-5D-5L: Results from an international survey of patients","volume":"123","author":"Efthymiadou","year":"2019","journal-title":"Health Policy"},{"key":"ref_47","doi-asserted-by":"crossref","first-page":"1639","DOI":"10.1007\/s00296-020-04634-0","article-title":"Trends in idiopathic inflammatory myopathies: Cross-sectional data from the German National Database","volume":"40","author":"Albrecht","year":"2020","journal-title":"Rheumatol. Int."},{"key":"ref_48","doi-asserted-by":"crossref","first-page":"211","DOI":"10.3233\/JND-210667","article-title":"Health-related Quality of Life and Satisfaction with German Health Care Services in Patients with Charcot-Marie-Tooth Neuropathy","volume":"9","author":"Schorling","year":"2022","journal-title":"J. Neuromuscul. Dis."},{"key":"ref_49","doi-asserted-by":"crossref","first-page":"11","DOI":"10.1111\/jns.12251","article-title":"Neuromuscular disease-specific questionnaire to assess quality of life in patients with chronic inflammatory demyelinating polyradiculoneuropathy","volume":"23","author":"Kacar","year":"2018","journal-title":"J. Peripher. Nerv. Syst."},{"key":"ref_50","doi-asserted-by":"crossref","first-page":"1178","DOI":"10.1111\/j.1468-1331.2010.02992.x","article-title":"Italian validation of INQoL, a quality of life questionnaire for adults with muscle diseases","volume":"17","author":"Sansone","year":"2010","journal-title":"Eur. J. Neurol."},{"key":"ref_51","first-page":"1","article-title":"SF-36 Health Survey: Manual and interpretation guide","volume":"6","author":"Ware","year":"1993","journal-title":"Health Inst."},{"key":"ref_52","doi-asserted-by":"crossref","unstructured":"The Whoqol Group (1998). The World Health Organization Quality of Life Assessment (WHOQOL): Development and general psychometric properties. Soc. Sci. Med., 46, 1569\u20131585.","DOI":"10.1016\/S0277-9536(98)00009-4"},{"key":"ref_53","doi-asserted-by":"crossref","first-page":"809","DOI":"10.1111\/1756-185X.14120","article-title":"Health-related quality of life and work impairment in idiopathic inflammatory myopathies in South Australia","volume":"24","author":"Xu","year":"2021","journal-title":"Int. J. Rheum. Dis."},{"key":"ref_54","doi-asserted-by":"crossref","first-page":"1743","DOI":"10.1002\/acr.23198","article-title":"Predictors of Reduced Health-Related Quality of Life in Adult Patients with Idiopathic Inflammatory Myopathies","volume":"69","author":"Feldon","year":"2017","journal-title":"Arthritis Care Res."},{"key":"ref_55","doi-asserted-by":"crossref","first-page":"1164","DOI":"10.1136\/jnnp.2009.183863","article-title":"What determines quality of life in inclusion body myositis?","volume":"81","author":"Sadjadi","year":"2010","journal-title":"J. Neurol. Neurosurg Psychiatry"},{"key":"ref_56","doi-asserted-by":"crossref","first-page":"823","DOI":"10.2340\/16501977-0598","article-title":"Myotonic dystrophy: The burden for patients and their partners","volume":"42","author":"Timman","year":"2010","journal-title":"J. Rehabil. Med."},{"key":"ref_57","doi-asserted-by":"crossref","unstructured":"Beck, A.T., Steer, R.A., and Brown, G.K. (1996). Manual for the Beck Depression Inventory-II, Psychological Corporation.","DOI":"10.1037\/t00742-000"},{"key":"ref_58","doi-asserted-by":"crossref","first-page":"606","DOI":"10.1046\/j.1525-1497.2001.016009606.x","article-title":"The PHQ-9: Validity of a brief depression severity measure","volume":"16","author":"Kroenke","year":"2001","journal-title":"J. Gen. Intern. Med."},{"key":"ref_59","doi-asserted-by":"crossref","first-page":"58","DOI":"10.1002\/acr.23002","article-title":"Validation of Standardized Questionnaires Evaluating Symptoms of Depression in Rheumatoid Arthritis Patients: Approaches to Screening for a Frequent Yet Underrated Challenge","volume":"69","author":"Englbrecht","year":"2017","journal-title":"Arthritis Care Res."},{"key":"ref_60","doi-asserted-by":"crossref","first-page":"189","DOI":"10.1016\/j.jpsychires.2018.05.020","article-title":"Mapping risk factors for depression across the lifespan: An umbrella review of evidence from meta-analyses and Mendelian randomization studies","volume":"103","author":"Evangelou","year":"2018","journal-title":"J. Psychiatr. Res."},{"key":"ref_61","doi-asserted-by":"crossref","first-page":"657","DOI":"10.1017\/S1041610221000399","article-title":"The longitudinal association between loneliness and depressive symptoms in the elderly: A systematic review","volume":"34","author":"Imbimbo","year":"2022","journal-title":"Int. Psychogeriatr."}],"container-title":["Journal of Clinical Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2077-0383\/12\/15\/5051\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,10]],"date-time":"2025-10-10T20:23:31Z","timestamp":1760127811000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2077-0383\/12\/15\/5051"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,7,31]]},"references-count":61,"journal-issue":{"issue":"15","published-online":{"date-parts":[[2023,8]]}},"alternative-id":["jcm12155051"],"URL":"https:\/\/doi.org\/10.3390\/jcm12155051","relation":{},"ISSN":["2077-0383"],"issn-type":[{"value":"2077-0383","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,7,31]]}}}