Het syndroom van Sjögren (SS) is een auto-immuunziekte waarbij o.a. de speeksel- en traanklieren worden aangetast met monddroogheid en droge ogen als gevolg. Veel SS patiënten klagen tevens over vermoeidheid. Om de diagnose SS te kunnen stellen, moeten de patiënten een veelheid aan onderzoeken ondergaan. Mogelijk kan echografisch onderzoek van de speekselklieren een aanvulling zijn op deze testen. Echografie is een alom beschikbaar, snel en pijnloos onderzoek. Met betrekking tot de behandeling van SS bleek een behandeling met rituximab, dat aangrijpt op B-cellen, effectief te zijn. Onbekend was echter welke patiënten juist wel of niet goed reageren op rituximab. Tenslotte raadplegen veel patiënten het internet om informatie te vinden over SS. Het was echter onbekend hoe betrouwbaar deze informatie is. De in dit proefschrift beschreven studies toonden aan dat echografisch onderzoek van de speekselklieren inderdaad een betrouwbare techniek is om SS te diagnosticeren, een goede aanvulling is op meer invasieve onderzoeken (o.a. speekselklierbiopsie). Met betrekking tot de behandeling van SS met rituximab zagen we dat de speekselklieren herstel vertoonden. Bovendien bleek dat rituximab het beste werkte in patiënten waarbij een groot aantal B-cellen in het speekselklierweefsel aanwezig waren. Deze kennis kan worden gebruikt om een behandeling met rituximab beter op de patiënt af te stemmen. Tenslotte bleek de op Websites en YouTube beschikbare informatie over SS vaak niet van een goede kwaliteit te zijn. Alleen informatie van nieuwsdiensten en universitaire web-sites bleken betrouwbare informatie te geven. In het algemeen is er een risico dat patiënten onjuiste informatie krijgen over SS

Delli, Konstantina

English

Het syndroom van Sjögren (SS) is een auto-immuunziekte waarbij o.a. de speeksel- en traanklieren worden aangetast met monddroogheid en droge ogen als gevolg. Veel SS patiënten klagen tevens over vermoeidheid.Om de diagnose SS te kunnen stellen, moeten de patiënten een veelheid aan onderzoeken ondergaan. Mogelijk kan echografisch onderzoek van de speekselklieren een aanvulling zijn op deze testen. Echografie is een alom beschikbaar, snel en pijnloos onderzoek. Met betrekking tot de behandeling van SS bleek een behandeling met rituximab, dat aangrijpt op B-cellen, effectief te zijn. Onbekend was echter welke patiënten juist wel of niet goed reageren op rituximab. Tenslotte raadplegen veel patiënten het internet om informatie te vinden over SS. Het was echter onbekend hoe betrouwbaar deze informatie is.De in dit proefschrift beschreven studies toonden aan dat echografisch onderzoek van de speekselklieren inderdaad een betrouwbare techniek is om SS te diagnosticeren, een goede aanvulling is op meer invasieve onderzoeken (o.a. speekselklierbiopsie). Met betrekking tot de behandeling van SS met rituximab zagen we dat de speekselklieren herstel vertoonden. Bovendien bleek dat rituximab het beste werkte in patiënten waarbij een groot aantal B-cellen in het speekselklierweefsel aanwezig waren. Deze kennis kan worden gebruikt om een behandeling met rituximab beter op de patiënt af te stemmen. Tenslotte bleek de op Websites en YouTube beschikbare informatie over SS vaak niet van een goede kwaliteit te zijn. Alleen informatie van nieuwsdiensten en universitaire web-sites bleken betrouwbare informatie te geven. In het algemeen is er een risico dat patiënten onjuiste informatie krijgen over SS.Sjögren’s syndrome (SS) is an autoimmune disease that typically affects the salivary and tear glands, causing dry mouth and dry eyes. SS patients also commonly feel tired and physically exhausted.In order to diagnose SS several diagnostic tests are commonly performed. Recently, salivary gland ultrasonography has drawn a lot of attention as a new diagnostic tool in SS because it is a fast, painless, non-invasive and non-irradiating method. As far as treatment is concerned, rituximab, which targets B-cells, has been shown to reduce symptoms in patients. It is not known, however, which patient will benefit from this treatment. Finally, nowadays it is very likely that patients as well as their care givers may search the Internet for information on the progression of the disease, its complaints and treatment possibilities, but the quality of this information has not been evaluated. The studies described in this thesis have revealed that salivary gland ultrasonography is an accurate technique to diagnose SS and should get a place in the diagnostic work-up. Additionally, we showed that treatment with rituximab decreased the inflammation in salivary glands, as well as that patients with SS who have a high number of B-cells in the salivary glands best responded to this treatment. Thus, treatment of SS patients can probably be personalized. Finally, Web sites and YouTube videos dealing with SS had a highly variable quality. Only news agencies and university channels provided reliable information for SS. Thus, generally, there is a risk that patients with SS might be misinformed

ARTS repository - University of Groningen

   University of GroningenPrimary Sjögren’s SyndromeDelli, KonstantinaIMPORTANT NOTE: You are advised to consult the publisher's version (publisher's PDF) if you wish to cite fromit. Please check the document version below.Document VersionPublisher's PDF, also known as Version of recordPublication date:2017Link to publication in University of Groningen/UMCG research databaseCitation for published version (APA):Delli, K. (2017). Primary Sjögren’s Syndrome: towards a new era in diagnosis, treatment and e-patienteducation. [Thesis fully internal (DIV), University of Groningen]. University of Groningen.CopyrightOther than for strictly personal use, it is not permitted to download or to forward/distribute the text or part of it without the consent of theauthor(s) and/or copyright holder(s), unless the work is under an open content license (like Creative Commons).The publication may also be distributed here under the terms of Article 25fa of the Dutch Copyright Act, indicated by the “Taverne” license.More information can be found on the University of Groningen website: https://www.rug.nl/library/open-access/self-archiving-pure/taverne-amendment.Take-down policyIf you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediatelyand investigate your claim.Downloaded from the University of Groningen/UMCG research database (Pure): http://www.rug.nl/research/portal. For technical reasons thenumber of authors shown on this cover page is limited to 10 maximum.Download date: 09-09-2023Chapter 3BComment on ‘Diagnostic accuracies of sialography and salivary ultrasonography in Sjögren’s syndrome patients: a meta-analysis’ by Song and Lee (2014) Konstantina Delli1, Pieter U Dijkstra1,2, Frederik KL Spijkervet1, Hendrika Bootsma3,  Arjan Vissink1Affiliations:1. Department of Oral and Maxillofacial Surgery2. Department of Rehabilitation, Center for Rehabilitation3. Department of Rheumatology and Clinical Immunology  University of Groningen, University Medical Center  Groningen, Groningen, The NetherlandsEdited version of: Clin Exp Rheumatol. 2015;33:293.7776Chapter 3BTable 1: Overview of the data presented in the source publications and the data presented by Song and Lee.Source publications Data from  source papersData reported by  Song and Lee(2014)SialographyUltrasonographySSCOSUM SS  and COSSCOSUM SS  and COTPFPFNTNSUM sialography TPFPFNTNSUM ultrasonography Takagi et al., 201018817236017717234914631421413601545034122360Obinata et al., 20103637733237693026357328882973Poul et al., 200845156037155235210136038471160Salaffi et al., 2008 777915668791475612216715658131966156Yonetsu et al., 2002 171123294151123274149230121302130741116294Yoshiura et al., 1997 232144-Sialography2440*6423012145-Ultrasonography2441**65111132146SS: Sjögren syndrome patients, CO: Controls, TP: true positive, FP: False positive, FN: False negative, TN: True negative, *:19 with nonspecific parotitis and 21 healthy volunteers, **: 19 nonspecific parotitis and 20 healthy volunteers.With great interest we have read the recently published meta-analysis by Song and Lee [1] in your journal regarding the diagnostic properties of sialography and salivary ultrasonography in Sjögren’s Syndrome (SS) patients. A systematic review and meta-analysis on this topic has been lacking so far from the literature and, thus, eagerly expected. We would like to express some concerns regarding Table 1 of their study in relation to the study outcomes. There seems to be a discrepancy between the data shown in the meta-analysis and the data presented by the source studies [2-7], viz.: 1. In the study of Tagaki et al. 2010 [2], the number of cases with SS is 188 as op-posed to 177 reported by Song and Lee [1]. 2. In the study of Obinata et al. 2010 [3], the number of cases with SS is 36 as opposed to 32 reported by Song and Lee [1].3. In the study of Poul et al. 2008 [4], which is erroneously cited as Poul et al. 2009, the number of cases with SS is 45 as opposed to 32 reported by Song and Lee [1].4. In the study of Salaffi et al. 2008 [5], the number of cases with SS is 77 as op-posed to 68 reported by Song and Lee [1].5. In the study of Yonetsu et al. 2002 [6], the number of cases is 171 as opposed to 151 reported by Song and Lee [1].6. In the study of Yoshiura et al. 1997 [7], the number of cases with SS is 24 as opposed to 23 and the number of controls is 40 and 41 depending on the di-agnostic technique tested, as opposed to 21 reported by Song and Lee [1]. Additionally, summing the numbers of true positive, true negatives, false positives and false negatives in Table 1 of Song and Lee’s paper does not add up to the same numbers [1]. It is possible that the data set was not complete for every participant in the source studies. See, e.g., the study of Yoshiura et al. 1997, in which data of 2 control groups were used with different numbers for sialography and ultra-sonography [7]. Furthermore, some source studies do not report the number of true positives, true negatives, false positives and false negatives. If Song and Lee calculated the number of true positives, true negatives, false positives and false negatives on basis of the reported sensitivity and specificity of the source popula-tions, it is essential that the correct number of participants with SS and the number of controls in the various studies is entered in the calculations [1]. Finally, Song and Lee report that discrepancies between reviewers were resolved by consensus or a third reviewer [1]. However, they fail to present who the third reviewer was (it might be that there were no discrepancies that could not be resolved by consensus, so there was no need for a third reviewer) and do not report inter-observer agreement measures.We were wondering which numbers were entered in the statistical program to per-form the meta-analyses, since these numbers influence the outcome of the study. We would appreciate if the authors could comment on the above raised issues.7978Chapter 3BReferences1. Song GG, Lee YH. Diagnostic accuracies of sialography and salivary ultrasonography in Sjögren’s syndrome patients: a meta-analysis. Clin Exp Rheumatol 2014;32:516-22.2. Takagi Y, Kimura Y, Nakamura H, et al. Sali-vary gland ultrasonography: can it be an al-ternative to sialography as an imaging moda-lity for Sjögren’s syndrome? Ann Rheum Dis 2010;69:1321-4.3. Obinata K, Sato T, Ohmori K, et al. A compa-rison of diagnostic tools for Sjögren syndrome, with emphasis on sialography, histopathology, and ultrasonography. Oral Surg Oral Med Oral Pathol Oral Radiol Endod 2010;109:129-34. 4. Poul JH, Brown JE, Davies J. Retrospective study of the effectiveness of high-resolution ultrasound compared with sialography in the diagnosis of Sjogren’s syndrome. Dentomaxil-lofac Radiol 2008;37:392-7. 5. Salaffi F, Carotti M, Iagnocco A, et al. Ul-trasonography of salivary glands in primary Sjögren’s syndrome: a comparison with con-trast sialography and scintigraphy. Rheumatol-ogy (Oxford) 2008;47:1244-9.6. Yonetsu K, Takagi Y, Sumi M, et al. Sonogra-phy as a replacement for sialography for the di-agnosis of salivary glands affected by Sjögren’s syndrome. Ann Rheum Dis 2002;61:276-7.7. Yoshiura K, Yuasa K, Tabata O, et al. Reli-ability of ultrasonography and sialography in the diagnosis of Sjögren’s syndrome. Oral Surg Oral Med Oral Pathol Oral Radiol Endod 1997;83:400-7.

Primary Sjögren’s Syndrome:towards a new era in diagnosis, treatment and e-patient education

University of Groningen

NARCIS 

Primary Sjögren’s Syndrome: towards a new era in diagnosis, treatment and e-patient education

   University of GroningenPrimary Sjögren’s SyndromeDelli, KonstantinaIMPORTANT NOTE: You are advised to consult the publisher's version (publisher's PDF) if you wish to cite fromit. Please check the document version below.Document VersionPublisher's PDF, also known as Version of recordPublication date:2017Link to publication in University of Groningen/UMCG research databaseCitation for published version (APA):Delli, K. (2017). Primary Sjögren’s Syndrome: towards a new era in diagnosis, treatment and e-patienteducation. [Thesis fully internal (DIV), University of Groningen]. University of Groningen.CopyrightOther than for strictly personal use, it is not permitted to download or to forward/distribute the text or part of it without the consent of theauthor(s) and/or copyright holder(s), unless the work is under an open content license (like Creative Commons).The publication may also be distributed here under the terms of Article 25fa of the Dutch Copyright Act, indicated by the “Taverne” license.More information can be found on the University of Groningen website: https://www.rug.nl/library/open-access/self-archiving-pure/taverne-amendment.Take-down policyIf you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediatelyand investigate your claim.Downloaded from the University of Groningen/UMCG research database (Pure): http://www.rug.nl/research/portal. For technical reasons thenumber of authors shown on this cover page is limited to 10 maximum.Download date: 28-04-2023Chapter 3BComment on ‘Diagnostic accuracies of sialography and salivary ultrasonography in Sjögren’s syndrome patients: a meta-analysis’ by Song and Lee (2014) Konstantina Delli1, Pieter U Dijkstra1,2, Frederik KL Spijkervet1, Hendrika Bootsma3,  Arjan Vissink1Affiliations:1. Department of Oral and Maxillofacial Surgery2. Department of Rehabilitation, Center for Rehabilitation3. Department of Rheumatology and Clinical Immunology  University of Groningen, University Medical Center  Groningen, Groningen, The NetherlandsEdited version of: Clin Exp Rheumatol. 2015;33:293.7776Chapter 3BTable 1: Overview of the data presented in the source publications and the data presented by Song and Lee.Source publications Data from  source papersData reported by  Song and Lee(2014)SialographyUltrasonographySSCOSUM SS  and COSSCOSUM SS  and COTPFPFNTNSUM sialography TPFPFNTNSUM ultrasonography Takagi et al., 201018817236017717234914631421413601545034122360Obinata et al., 20103637733237693026357328882973Poul et al., 200845156037155235210136038471160Salaffi et al., 2008 777915668791475612216715658131966156Yonetsu et al., 2002 171123294151123274149230121302130741116294Yoshiura et al., 1997 232144-Sialography2440*6423012145-Ultrasonography2441**65111132146SS: Sjögren syndrome patients, CO: Controls, TP: true positive, FP: False positive, FN: False negative, TN: True negative, *:19 with nonspecific parotitis and 21 healthy volunteers, **: 19 nonspecific parotitis and 20 healthy volunteers.With great interest we have read the recently published meta-analysis by Song and Lee [1] in your journal regarding the diagnostic properties of sialography and salivary ultrasonography in Sjögren’s Syndrome (SS) patients. A systematic review and meta-analysis on this topic has been lacking so far from the literature and, thus, eagerly expected. We would like to express some concerns regarding Table 1 of their study in relation to the study outcomes. There seems to be a discrepancy between the data shown in the meta-analysis and the data presented by the source studies [2-7], viz.: 1. In the study of Tagaki et al. 2010 [2], the number of cases with SS is 188 as op-posed to 177 reported by Song and Lee [1]. 2. In the study of Obinata et al. 2010 [3], the number of cases with SS is 36 as opposed to 32 reported by Song and Lee [1].3. In the study of Poul et al. 2008 [4], which is erroneously cited as Poul et al. 2009, the number of cases with SS is 45 as opposed to 32 reported by Song and Lee [1].4. In the study of Salaffi et al. 2008 [5], the number of cases with SS is 77 as op-posed to 68 reported by Song and Lee [1].5. In the study of Yonetsu et al. 2002 [6], the number of cases is 171 as opposed to 151 reported by Song and Lee [1].6. In the study of Yoshiura et al. 1997 [7], the number of cases with SS is 24 as opposed to 23 and the number of controls is 40 and 41 depending on the di-agnostic technique tested, as opposed to 21 reported by Song and Lee [1]. Additionally, summing the numbers of true positive, true negatives, false positives and false negatives in Table 1 of Song and Lee’s paper does not add up to the same numbers [1]. It is possible that the data set was not complete for every participant in the source studies. See, e.g., the study of Yoshiura et al. 1997, in which data of 2 control groups were used with different numbers for sialography and ultra-sonography [7]. Furthermore, some source studies do not report the number of true positives, true negatives, false positives and false negatives. If Song and Lee calculated the number of true positives, true negatives, false positives and false negatives on basis of the reported sensitivity and specificity of the source popula-tions, it is essential that the correct number of participants with SS and the number of controls in the various studies is entered in the calculations [1]. Finally, Song and Lee report that discrepancies between reviewers were resolved by consensus or a third reviewer [1]. However, they fail to present who the third reviewer was (it might be that there were no discrepancies that could not be resolved by consensus, so there was no need for a third reviewer) and do not report inter-observer agreement measures.We were wondering which numbers were entered in the statistical program to per-form the meta-analyses, since these numbers influence the outcome of the study. We would appreciate if the authors could comment on the above raised issues.7978Chapter 3BReferences1. Song GG, Lee YH. Diagnostic accuracies of sialography and salivary ultrasonography in Sjögren’s syndrome patients: a meta-analysis. Clin Exp Rheumatol 2014;32:516-22.2. Takagi Y, Kimura Y, Nakamura H, et al. Sali-vary gland ultrasonography: can it be an al-ternative to sialography as an imaging moda-lity for Sjögren’s syndrome? Ann Rheum Dis 2010;69:1321-4.3. Obinata K, Sato T, Ohmori K, et al. A compa-rison of diagnostic tools for Sjögren syndrome, with emphasis on sialography, histopathology, and ultrasonography. Oral Surg Oral Med Oral Pathol Oral Radiol Endod 2010;109:129-34. 4. Poul JH, Brown JE, Davies J. Retrospective study of the effectiveness of high-resolution ultrasound compared with sialography in the diagnosis of Sjogren’s syndrome. Dentomaxil-lofac Radiol 2008;37:392-7. 5. Salaffi F, Carotti M, Iagnocco A, et al. Ul-trasonography of salivary glands in primary Sjögren’s syndrome: a comparison with con-trast sialography and scintigraphy. Rheumatol-ogy (Oxford) 2008;47:1244-9.6. Yonetsu K, Takagi Y, Sumi M, et al. Sonogra-phy as a replacement for sialography for the di-agnosis of salivary glands affected by Sjögren’s syndrome. Ann Rheum Dis 2002;61:276-7.7. Yoshiura K, Yuasa K, Tabata O, et al. Reli-ability of ultrasonography and sialography in the diagnosis of Sjögren’s syndrome. Oral Surg Oral Med Oral Pathol Oral Radiol Endod 1997;83:400-7.

Primary Sjögren’s Syndrome:towards a new era in diagnosis, treatment and e-patient education

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