Yaici, Remi, Roth, Mathias, Juergens, Lukas, Al Nawaiseh, Sami, Burkhard, Dick, Besgen, Volker, Fuest, Matthias, Girbardt, Christian, Hampel, Ulrike, Heichel, Jens, Heiligenhaus, Arnd, Herwig-Carl, Martina C., Kakkassery, Vinodh ORCID: 0000-0001-6212-8964, Kontopoulou, Kalliopi, Loeffler, Karin U., Maier, Philip Christian, Noelle, Bernhard, Pach, Johanna, Paul, Sebastian, Pleyer, Uwe, Poellmann, Michael, Saeger, Mark, Schmidt, Enno, Siebelmann, Sebastian, Sokolenko, Ekatarina, Strudel, Lisa, Stuebiger, Nicole, Tarhan, Melih, Theuersbacher, Johanna, van Oterendorp, Christian, Walker, Marten, Wiecha, Carolin, Wykrota, Agata Anna and Geerling, Gerd . On the Current Care Situation and Treatment of Ocular Mucous Membrane Pemphigoid in Germany. Klinische Monatsblat. Augenheilkunde. STUTTGART: GEORG THIEME VERLAG KG. ISSN 1439-3999

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Abstract

Background Ocular involvement in mucous membrane pemphigoid (MMP) is relatively rare, with a prevalence of 25 cases per million population, equating to approx. 2,100 patients throughout Germany. Diagnosis can be difficult - especially in cases of isolated ocular involvement - and treatment can be complex and lengthy. Immunosuppressants or immunomodulatory drugs are often used. Due to the complexity of diagnosis and treatment, MMP patients are usually referred to specialized centers. The aim of this project was to evaluate the current care situation of patients with ocular MMP in Germany. Methods A paper-based survey was designed and sent to all university eye clinics and other specialized centers in Germany in April 2020. The survey asked about the existence of a specialized outpatient service, the total annual number of patients with MMP, the annual number of newly diagnosed patients, any interdisciplinary collaboration for diagnostic or therapeutic purposes, as well as the local and systemic therapy used. Results Of a total of 44 clinics, 28 (64%) responded, reporting a total average of 27 +/- 42 (0 - 200) patients and 3.6 +/- 2.2 (0 - 10) new cases per year. This corresponds to a total of 741 patients. Only nine (32%) of the responding clinics offer specialized MMP clinics. 93% of the centers collaborate with the local dermatology department. 79% perform serological and histological diagnostics in-house. About half of the centers (n = 16) apply a standardized treatment regime. Systemic glucocorticoids (66.7%) are most commonly used, followed by mycophenolate mofetil and dapsone (57.1%), rituximab (33.3%), azathioprine and cyclophosphamide (28.6%), as well as methotrexate (19.0%). The least frequently used treatment is intravenous immunoglobulin (14.3%). Conclusion This survey of German ophthalmology departments obtained data from about one third of the estimated total cohort of all patients with MMP in Germany. These are presumed to be exclusively patients with at least one ocular involvement. The complex care of these patients is usually provided in collaboration with a dermatologist and with the use of systemic anti-inflammatory medication. Currently, an ophthalmological MMP register is being established to better record the epidemiology and care situation of this rare disease in Germany and to improve it in the long term. Background Ocular involvement in mucous membrane pemphigoid (MMP) is relatively rare, with a prevalence of 25 cases per million population, equating to approx. 2,100 patients throughout Germany. Diagnosis can be difficult - especially in cases of isolated ocular involvement - and treatment can be complex and lengthy. Immunosuppressants or immunomodulatory drugs are often used. Due to the complexity of diagnosis and treatment, MMP patients are usually referred to specialized centers. The aim of this project was to evaluate the current care situation of patients with ocular MMP in Germany. Methods A paper-based survey was designed and sent to all university eye clinics and other specialized centers in Germany in April 2020. The survey asked about the existence of a specialized outpatient service, the total annual number of patients with MMP, the annual number of newly diagnosed patients, any interdisciplinary collaboration for diagnostic or therapeutic purposes, as well as the local and systemic therapy used. Results Of a total of 44 clinics, 28 (64%) responded, reporting a total average of 27 +/- 42 (0 - 200) patients and 3.6 +/- 2.2 (0 - 10) new cases per year. This corresponds to a total of 741 patients. Only nine (32%) of the responding clinics offer specialized MMP clinics. 93% of the centers collaborate with the local dermatology department. 79% perform serological and histological diagnostics in-house. About half of the centers (n = 16) apply a standardized treatment regime. Systemic glucocorticoids (66.7%) are most commonly used, followed by mycophenolate mofetil and dapsone (57.1%), rituximab (33.3%), azathioprine and cyclophosphamide (28.6%), as well as methotrexate (19.0%). The least frequently used treatment is intravenous immunoglobulin (14.3%). Conclusion This survey of German ophthalmology departments obtained data from about one third of the estimated total cohort of all patients with MMP in Germany. These are presumed to be exclusively patients with at least one ocular involvement. The complex care of these patients is usually provided in collaboration with a dermatologist and with the use of systemic anti-inflammatory medication. Currently, an ophthalmological MMP register is being established to better record the epidemiology and care situation of this rare disease in Germany and to improve it in the long term.

Item Type: Journal Article
Creators:
CreatorsEmailORCIDORCID Put Code
Yaici, RemiUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Roth, MathiasUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Juergens, LukasUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Al Nawaiseh, SamiUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Burkhard, DickUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Besgen, VolkerUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Fuest, MatthiasUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Girbardt, ChristianUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hampel, UlrikeUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Heichel, JensUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Heiligenhaus, ArndUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Herwig-Carl, Martina C.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kakkassery, VinodhUNSPECIFIEDorcid.org/0000-0001-6212-8964UNSPECIFIED
Kontopoulou, KalliopiUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Loeffler, Karin U.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Maier, Philip ChristianUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Noelle, BernhardUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Pach, JohannaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Paul, SebastianUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Pleyer, UweUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Poellmann, MichaelUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Saeger, MarkUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Schmidt, EnnoUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Siebelmann, SebastianUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Sokolenko, EkatarinaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Strudel, LisaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Stuebiger, NicoleUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Tarhan, MelihUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Theuersbacher, JohannaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
van Oterendorp, ChristianUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Walker, MartenUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Wiecha, CarolinUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Wykrota, Agata AnnaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Geerling, GerdUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
URN: urn:nbn:de:hbz:38-697848
DOI: 10.1055/a-1720-1819
Journal or Publication Title: Klinische Monatsblat. Augenheilkunde
Publisher: GEORG THIEME VERLAG KG
Place of Publication: STUTTGART
ISSN: 1439-3999
Language: German
Faculty: Unspecified
Divisions: Unspecified
Subjects: no entry
Uncontrolled Keywords:
KeywordsLanguage
CICATRISING CONJUNCTIVITIS; RITUXIMAB; KERATOPROSTHESIS; THERAPYMultiple languages
OphthalmologyMultiple languages
URI: http://kups.ub.uni-koeln.de/id/eprint/69784

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