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Open Access 05-01-2024 | Giant Cell Arteritis | Observational Research

Trends in health care of patients with vasculitides, including giant cell arteritis, Takayasu arteritis, ANCA-associated vasculitis and Behçet’s disease: cross-sectional data of the German National Database 2007–2021

Authors: Jörg Henes, Jutta G. Richter, Katja Thiele, Uta Kiltz, Johanna Callhoff, Katinka Albrecht

Published in: Rheumatology International | Issue 3/2024

Abstract

The aim of this study is to present the current care situation of patients with giant cell arteritis (GCA), Takayasu arteritis (TAK), ANCA-associated vasculitis (AAV) and Behçet’s disease (BD). Trends over the last 15 years will reflect improvements and remaining deficits in the management of vasculitides. Consecutive cross-sectional data from patients with vasculitides from the German National Database (NDB) of the Collaborative Arthritis Centres between 2007 and 2021 were included. Medication, physician- and patient-reported outcomes on disease activity and disease burden, inpatient stays and occupational participation are compared for different vasculitis entities and over time. Employment rates were compared to German population rates. Between 502 and 854 vasculitis patients were annually documented. GCA and AAV were the most common vasculitides. Median disease duration ranged from 2 to 16 years. Over the years, glucocorticoids decreased in proportion and dose, most markedly in GCA and TAK, while biologic therapies increased up to 27%. Physicians rated disease activity as low for the vast majority of patients, while patients-reported moderate outcomes in many dimensions. PROs remained largely unchanged. The proportion of employed patients (< 65 years) increased from 47 to 57%. In recent years, biologics are increasingly used in patients with vasculitides, while glucocorticoids decreased significantly. PRO’s have not improved. Work participation increased but remains lower than that in the German population.

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Jennette JC, Falk RJ, Bacon PA, Basu N, Cid MC, Ferrario F, Flores-Suarez LF, Gross WL, Guillevin L, Hagen EC, Hoffman GS, Jayne DR, Kallenberg CG, Lamprecht P, Langford CA, Luqmani RA, Mahr AD, Matteson EL, Merkel PA, Ozen S, Pusey CD, Rasmussen N, Rees AJ, Scott DG, Specks U, Stone JH, Takahashi K, Watts RA (2013) 2012 revised International Chapel Hill Consensus Conference nomenclature of vasculitides. Arthritis Rheum 65(1):1–11. https://doi.org/10.1002/art.37715CrossRefPubMed

Ponte C, Grayson PC, Robson JC, Suppiah R, Gribbons KB, Judge A, Craven A, Khalid S, Hutchings A, Watts RA, Merkel PA, Luqmani RA, Group DS (2022) 2022 American College of Rheumatology/EULAR classification criteria for giant cell arteritis. Ann Rheum Dis 81(12):1647–1653. https://doi.org/10.1136/ard-2022-223480CrossRefPubMed

Grayson PC, Ponte C, Suppiah R, Robson JC, Gribbons KB, Judge A, Craven A, Khalid S, Hutchings A, Danda D, Luqmani RA, Watts RA, Merkel PA, Group DS (2022) 2022 American College of Rheumatology/EULAR classification criteria for Takayasu arteritis. Ann Rheum Dis 81(12):1654–1660. https://doi.org/10.1136/ard-2022-223482CrossRefPubMed

Grayson PC, Ponte C, Suppiah R, Robson JC, Craven A, Judge A, Khalid S, Hutchings A, Luqmani RA, Watts RA, Merkel PA, Group DS (2022) 2022 American College of Rheumatology/European Alliance of Associations for Rheumatology classification criteria for eosinophilic granulomatosis with polyangiitis. Arthritis Rheumatol 74(3):386–392. https://doi.org/10.1002/art.41982CrossRefPubMed

Robson JC, Grayson PC, Ponte C, Suppiah R, Craven A, Judge A, Khalid S, Hutchings A, Watts RA, Merkel PA, Luqmani RA, Investigators D (2022) 2022 American College of Rheumatology/European Alliance of Associations for Rheumatology classification criteria for granulomatosis with polyangiitis. Ann Rheum Dis 81(3):315–320. https://doi.org/10.1136/annrheumdis-2021-221795CrossRefPubMed

Suppiah R, Robson JC, Grayson PC, Ponte C, Craven A, Khalid S, Judge A, Hutchings A, Merkel PA, Luqmani RA, Watts RA, Dcvas I (2022) 2022 American College of Rheumatology/European Alliance of Associations for Rheumatology classification criteria for microscopic polyangiitis. Ann Rheum Dis 81(3):321–326. https://doi.org/10.1136/annrheumdis-2021-221796CrossRefPubMed

Emmi G, Vaglio A (2023) The new look of classification criteria for systemic vasculitis. Nat Rev Rheumatol 19(4):198–199. https://doi.org/10.1038/s41584-023-00933-5CrossRefPubMed

Sharma A, Mohammad AJ, Turesson C (2020) Incidence and prevalence of giant cell arteritis and polymyalgia rheumatica: a systematic literature review. Semin Arthritis Rheum 50(5):1040–1048. https://doi.org/10.1016/j.semarthrit.2020.07.005CrossRefPubMed

Redondo-Rodriguez R, Mena-Vazquez N, Cabezas-Lucena AM, Manrique-Arija S, Mucientes A, Fernandez-Nebro A (2022) Systematic review and metaanalysis of worldwide incidence and prevalence of antineutrophil cytoplasmic antibody (ANCA) associated vasculitis. J Clin Med. https://doi.org/10.3390/jcm11092573CrossRefPubMedPubMedCentral

10.

Herlyn K, Buckert F, Gross WL, Reinhold-Keller E (2014) Doubled prevalence rates of ANCA-associated vasculitides and giant cell arteritis between 1994 and 2006 in northern Germany. Rheumatology (Oxford) 53(5):882–889. https://doi.org/10.1093/rheumatology/ket440CrossRefPubMed

11.

Hellmich B, Lamprecht P, Spearpoint P, Gotte D, Deichmann A, Buchholz I, Schonermark MP, Rutherford P (2021) New insights into the epidemiology of ANCA-associated vasculitides in Germany: results from a claims data study. Rheumatology (Oxford) 60(10):4868–4873. https://doi.org/10.1093/rheumatology/keaa924CrossRefPubMed

12.

Albrecht K, Binder S, Minden K, Poddubnyy D, Regierer AC, Strangfeld A, Callhoff J (2023) Systematic review to estimate the prevalence of inflammatory rheumatic diseases in Germany. German version. Z Rheumatol. https://doi.org/10.1007/s00393-022-01305-2CrossRefPubMedPubMedCentral

13.

Kotter I, Krusche M (2023) Inflammatory rheumatic diseases in migrants. Inn Med (Heidelb) 64(5):426–434. https://doi.org/10.1007/s00108-023-01514-0CrossRefPubMed

14.

Seyahi E (2017) Takayasu arteritis: an update. Curr Opin Rheumatol 29(1):51–56. https://doi.org/10.1097/BOR.0000000000000343CrossRefPubMed

15.

Albrecht K, Callhoff J, Zink A (2019) Long-term trends in rheumatology care : achievements and deficits in 25 years of the German national rheumatology database. Z Rheumatol 78(Suppl 2):65–72. https://doi.org/10.1007/s00393-019-0680-1CrossRefPubMed

16.

Thiele K, Albrecht K, Zink A, Aringer M, Karberg K, Spathling-Mestekemper S, von Hinuber U, Callhoff J (2022) Is the rheumatoid arthritis impact of disease (RAID) score a meaningful instrument for other inflammatory rheumatic diseases? A cross-sectional analysis of data from the German National Database. RMD Open. https://doi.org/10.1136/rmdopen-2022-002342CrossRefPubMedPubMedCentral

17.

Redeker I, Hoffmann F, Callhoff J, Haibel H, Sieper J, Zink A, Poddubnyy D (2018) Determinants of psychological well-being in axial spondyloarthritis: an analysis based on linked claims and patient-reported survey data. Ann Rheum Dis 77(7):1017–1024. https://doi.org/10.1136/annrheumdis-2017-212629CrossRefPubMed

18.

Statistisches Bundesamt d (2023) Erwerbstätigenquoten 1991 bis 2022. httphttps://www.destatis.de/DE/Themen/Arbeit/Arbeitsmarkt/Erwerbstaetigkeit/Tabellen/erwerbstaetigenquoten-gebietsstand-geschlecht-altergruppe-mikrozensus.html. Accessed 26 Apr 2023.

19.

Gisslander K, Rutherford M, Aslett L, Basu N, Dradin F, Hederman L, Hruskova Z, Kardaoui H, Lamprecht P, Licholai S, Musial J, O’Sullivan D, Puechal X, Scott J, Segelmark M, Straka R, Terrier B, Tesar V, Tesi M, Vaglio A, Wandrei D, White A, Wojcik K, Yaman B, Little MA, Mohammad AJ, consortium F (2023) Data quality and patient characteristics in European ANCA-associated vasculitis registries: data retrieval by federated querying. Ann Rheum Dis. https://doi.org/10.1136/ard-2023-224571CrossRef

20.

Goel R, Chandan JS, Thayakaran R, Adderley NJ, Nirantharakumar K, Harper L (2021) Cardiovascular and renal morbidity in Takayasu arteritis: a population-based retrospective cohort study from the United Kingdom. Arthritis Rheumatol 73(3):504–511. https://doi.org/10.1002/art.41529CrossRefPubMed

21.

Monti S, Milanesi A, Klersy C, Tomelleri A, Dagna L, Campochiaro C, Farina N, Muratore F, Galli E, Marvisi C, Bond M, Berti A, Bortolotti R, Padoan R, Schiavon F, Felicetti M, Nannini C, Cantini F, Giollo A, Rossini M, Conticini E, Frediani B, Conti F, Priori R, Sebastiani M, Cassone G, Quartuccio L, Treppo E, Bettio S, Hoxha A, Lovisotto M, Emmi G, Mattioli I, Leccese P, Caporali R, Argolini LM, Foti R, Visalli E, Colaci M, Salvarani C, Montecucco C, Italian Society of Rheumatology Vasculitis Study G (2023) Age at diagnosis influences the clinical phenotype, treatment strategies and outcomes in patients with giant cell arteritis: results from the observational GCAGE study on a large cohort of 1004 patients. Ann Rheum Dis. https://doi.org/10.1136/ard-2023-223895CrossRefPubMed

22.

Jo YG, Ortiz-Fernandez L, Coit P, Yilmaz V, Yentur SP, Alibaz-Oner F, Aksu K, Erken E, Duzgun N, Keser G, Cefle A, Yazici A, Ergen A, Alpsoy E, Salvarani C, Kisacik B, Kotter I, Henes J, Cinar M, Schaefer A, Nohutcu RM, Takeuchi F, Harihara S, Kaburaki T, Messedi M, Song YW, Kasifoglu T, Martin J, Gonzalez Escribano MF, Saruhan-Direskeneli G, Direskeneli H, Sawalha AH (2022) Sex-specific analysis in Behcet’s disease reveals higher genetic risk in male patients. J Autoimmun 132:102882. https://doi.org/10.1016/j.jaut.2022.102882CrossRefPubMedPubMedCentral

23.

Rohde M, Kernder A, Acar H, Dusing C, Fischer-Betz R, Haase I, Mucke J, Sander O, Richter J, Filla T, Schneider M, Chehab G (2023) Determinants of patient and physician global assessments of disease activity in anti-neutrophil cytoplasmic antibody-associated vasculitis. Front Med (Lausanne) 10:1107148. https://doi.org/10.3389/fmed.2023.1107148CrossRefPubMed

24.

Holle JU, Gross WL, Latza U, Nolle B, Ambrosch P, Heller M, Fertmann R, Reinhold-Keller E (2011) Improved outcome in 445 patients with Wegener’s granulomatosis in a German vasculitis center over four decades. Arthritis Rheum 63(1):257–266. https://doi.org/10.1002/art.27763CrossRefPubMed

25.

Berti A, Cornec D, Crowson CS, Specks U, Matteson EL (2017) The epidemiology of antineutrophil cytoplasmic autoantibody-associated vasculitis in Olmsted County, Minnesota: a twenty-year US population-based study. Arthritis Rheumatol 69(12):2338–2350. https://doi.org/10.1002/art.40313CrossRefPubMedPubMedCentral

26.

Sadeghi A, Rostami M, Amraei G, Davatchi F, Shahram F, Karimi Moghaddam A, Karimi Moghaddam Z, Zeraatchi A (2023) Clinical manifestations of Behcet’s disease: a retrospective cross-sectional study. Mediterr J Rheumatol 34(1):53–60. https://doi.org/10.31138/mjr.34.1.53CrossRefPubMedPubMedCentral

27.

Hellmich B, Agueda A, Monti S, Buttgereit F, de Boysson H, Brouwer E, Cassie R, Cid MC, Dasgupta B, Dejaco C, Hatemi G, Hollinger N, Mahr A, Mollan SP, Mukhtyar C, Ponte C, Salvarani C, Sivakumar R, Tian X, Tomasson G, Turesson C, Schmidt W, Villiger PM, Watts R, Young C, Luqmani RA (2020) 2018 Update of the EULAR recommendations for the management of large vessel vasculitis. Ann Rheum Dis 79(1):19–30. https://doi.org/10.1136/annrheumdis-2019-215672CrossRefPubMed

28.

Hellmich B, Sanchez-Alamo B, Schirmer JH, Berti A, Blockmans D, Cid MC, Holle JU, Hollinger N, Karadag O, Kronbichler A, Little MA, Luqmani RA, Mahr A, Merkel PA, Mohammad AJ, Monti S, Mukhtyar CB, Musial J, Price-Kuehne F, Segelmark M, Teng YKO, Terrier B, Tomasson G, Vaglio A, Vassilopoulos D, Verhoeven P, Jayne D (2023) EULAR recommendations for the management of ANCA-associated vasculitis: 2022 update. Ann Rheum Dis. https://doi.org/10.1136/ard-2022-223764CrossRef

29.

Hatemi G, Mahr A, Takeno M, Kim D, Melikoglu M, Cheng S, McCue S, Paris M, Chen M, Yazici Y (2022) Impact of apremilast on quality of life in Behcet’s syndrome: analysis of the phase 3 RELIEF study. RMD Open. https://doi.org/10.1136/rmdopen-2022-002235CrossRefPubMedPubMedCentral

30.

Moosig F, Bremer JP, Hellmich B, Holle JU, Holl-Ulrich K, Laudien M, Matthis C, Metzler C, Nolle B, Richardt G, Gross WL (2013) A vasculitis centre based management strategy leads to improved outcome in eosinophilic granulomatosis and polyangiitis (Churg-Strauss, EGPA): monocentric experiences in 150 patients. Ann Rheum Dis 72(6):1011–1017. https://doi.org/10.1136/annrheumdis-2012-201531CrossRefPubMed

31.

Schirmer JH, Wright MN, Vonthein R, Herrmann K, Nolle B, Both M, Henes FO, Arlt A, Gross WL, Schinke S, Reinhold-Keller E, Moosig F, Holle JU (2016) Clinical presentation and long-term outcome of 144 patients with microscopic polyangiitis in a monocentric German cohort. Rheumatology (Oxford) 55(1):71–79. https://doi.org/10.1093/rheumatology/kev286CrossRefPubMed

32.

Iking-Konert C, Wallmeier P, Arnold S, Adler S, de Groot K, Hellmich B, Hoyer BF, Holl-Ulrich K, Ihorst G, Kaufmann M, Kotter I, Muller-Ladner U, Magnus T, Rech J, Schubach F, Schulze-Koops H, Venhoff N, Wiech T, Villiger P, Lamprecht P (2021) The Joint Vasculitis Registry in German-speaking countries (GeVas) - a prospective, multicenter registry for the follow-up of long-term outcomes in vasculitis. BMC Rheumatol 5(1):40. https://doi.org/10.1186/s41927-021-00206-2CrossRefPubMedPubMedCentral

33.

Wallmeier Pass F et al. (2022) Das Gemeinsame Vaskulitis-Register im deutschsprachigen Raum (GeVas) – eine Subgruppenanalyse der 131 RZA-Patienten. Paper presented at the DGRh Berlin

34.

Barton JL, Imboden J, Graf J, Glidden D, Yelin EH, Schillinger D (2010) Patient-physician discordance in assessments of global disease severity in rheumatoid arthritis. Arthritis Care Res (Hoboken) 62(6):857–864. https://doi.org/10.1002/acr.20132CrossRefPubMed

35.

Castrejon I, Yazici Y, Samuels J, Luta G, Pincus T (2014) Discordance of global estimates by patients and their physicians in usual care of many rheumatic diseases: association with 5 scores on a Multidimensional Health Assessment Questionnaire (MDHAQ) that are not found on the Health Assessment Questionnaire (HAQ). Arthritis Care Res (Hoboken) 66(6):934–942. https://doi.org/10.1002/acr.22237CrossRefPubMed

36.

Hurtado-Arias JJ, Ramirez-Mulhern I, Gonzalez-Martinez C, Merayo-Chalico J, Barrera-Vargas A, Hinojosa-Azaola A (2023) Patient-reported outcomes in ANCA-associated vasculitis: a cross-sectional study to explore the interactions between patients’ and physicians’ perspectives. Rheumatol Int 43(5):933–940. https://doi.org/10.1007/s00296-023-05288-4CrossRefPubMedPubMedCentral

37.

Aydin SZ, Robson JC, Sreih AG, Hill C, Alibaz-Oner F, Mackie S, Beard S, Gul A, Hatemi G, Kermani TA, Mahr A, Meara A, Milman N, Shea B, Tomasson G, Tugwell P, Direskeneli H, Merkel PA (2019) Update on outcome measure development in large-vessel vasculitis: report from OMERACT 2018. J Rheumatol 46(9):1198–1201. https://doi.org/10.3899/jrheum.181072CrossRefPubMedPubMedCentral

38.

Thiele K, Albrecht K, Kopplin N, Callhoff J (2022) Deutsches Rheuma Forschungszentrum (DRFZ) Programmbereich Epidemiologie und Versorgungsforschung. Standardpräsentation 2020, Daten aus der Kerndokumentation. https://refubium.fu-berlin.de/handle/fub188/36566, Zugriff am 21 June 2023.

39.

Saur SJ, Schlogl A, Schmalen T, Krittian S, Pecher AC, Henes M, Xenitidis T, Henes J (2022) Sexual dysfunction and depression in Behcet’s disease in comparison to healthy controls. Rheumatol Int 42(1):121–126. https://doi.org/10.1007/s00296-021-05000-4CrossRefPubMed

Title: Trends in health care of patients with vasculitides, including giant cell arteritis, Takayasu arteritis, ANCA-associated vasculitis and Behçet’s disease: cross-sectional data of the German National Database 2007–2021
Authors: Jörg Henes
Jutta G. Richter
Katja Thiele
Uta Kiltz
Johanna Callhoff
Katinka Albrecht
Publication date: 05-01-2024
Publisher: Springer Berlin Heidelberg
Keywords: Giant Cell Arteritis
Giant Cell Arteritis
Takayasu's Arteriitis
Takayasu's Arteriitis
ANCA-Associated Vasculitis
ANCA-Associated Vasculitis
Vasculitis
Vasculitis
Granulomatosis with Polyangiitis
Granulomatosis with Polyangiitis
Glucocorticoid
Published in: Rheumatology International / Issue 3/2024
Print ISSN: 0172-8172
Electronic ISSN: 1437-160X
DOI: https://doi.org/10.1007/s00296-023-05508-x

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