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6. Progressive Pulmonary Fibrosis in Connective Tissue Disease

Author

Regenerative Medicine and Stem Cells, Infection & Immunity, Lab Reumatologie/Klinische Immunologie, van Laar, Jaap, Spierings, Julia, Voortman, Mareye, Chiu, Yu-Hsiang, Regenerative Medicine and Stem Cells, Infection & Immunity, Lab Reumatologie/Klinische Immunologie, van Laar, Jaap, Spierings, Julia, Voortman, Mareye, and Chiu, Yu-Hsiang

Published
2024

9. Breaking barriers: holistic assessment of ability to work in patients with sarcoidosis

Author

Drent, Marjolein, Russell, Anne-Marie, Saketkoo, Lesley Ann, Spagnolo, Paolo, Veltkamp, Marcel, Wells, Athol U, Goh, Nicole, Holland, Anne, Hochreiter, Johann, Kock, Selene, Verheyen, Karolien, Verbraecken, Johan, Cantin, André, Gillson, Ashley, Hambly, Nathan, Kolb, Martin, Bendstrup, Elisabeth, Leistiko, Anna, Møller, Janne, Kaarteenaho, Riitta, Crestani, Bruno, Israël-Biet, Dominique, Cohen Aubart, Fleur, Nunes, Hilario, Valeyre, Dominique, Bonella, Francesco, Buschulte, Katharina, Costabel, Ulrich, Kortsen, Peter, Kreuter, Michael, Luedike, Peter, Quadder, Bernd, Braune, Renate, Skowasch, Dirk, Antoniou, Katerina, Bouros, Demosthenes, Gogali, Athena, Margaritopoulos, George A., Papakosta, Despoina, Papiris, Spyros A, Manali, Effrosyni D, Tzouvelekis, Argyris, Tzilas, Vasilios, Agrawal, Aditya, Kashyap, Surender, Tyagi, Vijay Narain, Unnati, Desai, Abedini, Atefeh, Phelan, Sean, Bargagli, Elena, Cinetto, Francesco, Confalonieri, Marco, Confalonieri, Paola, Harari, Sergio, Luppi, Fabrizio, Martone, Filippo, Palmieri, Anna, Rottoli, Paola, Salton, Francesco, Scarpa, Ricardo, Tana, Claudio, Tomassetti, Sara, Azuma, Arata, Inui, Naoki, Nakamura, Yutaro, Inoue, Yoshikazu, Tanino, Yoshinori, Muhammad, Noorul Afidza, van Beek, Frouke, den Boer, Lenze, Boomars, Karin, Bresser, Paul, Claessen, Laura, Elfferich, Marjon, Erckens, Roel, van Helmondt, Sanne, Karakaya, Bekir, Grutters, Jan C., Hoitsma, Elske, Illy, Károly, Jansen, Tim L, Kahlmann, Vivienne, Knoet, Chris, Korenromp, Ingrid, Lenssen, Ton, Maassen vd Brinkdrs, Karen, Mager, Johannes Jurgen, Marcellis, Rik, Miedema, Jelle, Möller, Trudeke, Moonen, Linda A.A., Moor, Karen, Mostard, Rémy L.M., Nienhuis, Willemien, Nossent, Esther, Paulus, Michelle, Ponds, Rudolf, Nossent, George, Quanjel, Marian, Rottenberg, Felix, van de Sande, Jonathan S.O., Segers, Ruud, Soechitram, Shalini D., van Staa, AnneLoes, Strookappe, Bert, Swaans, Martin, van den Toorn, Leon, van de Ven, Marjo J.T., Voortman, Mareye, Vorselaars, Adriane Dore Marie, Vente, Lenneke, Wijnen, Petal A., Wijsenbeek, Marlies, De Vries, Jolanda, van Zanten, Arthur, Durheim, Michael, Rasch-Halvorsen, Øystein, Tøndell, Anders, Dubaniewicz, Anna, Piotrowski, Wojciech, Roter, Bartlomiej, Robalo Cordeiro, Carlos, Alfaro, Tiago, Strambu, Irina, Vizel, Alexander, Cano, Rafael, Balcells, Eva, Castillo, Diego, Francesqui, Joel, Mañá, Juan, Molina, Maria, Ojanguren, Inigo, Rodriguez Portal, Jose Antonio, Sellares, Jacobo, Arkema, Elizabeth, Darlington, Pernilla, Eldhagen, Per, Elfström, Katinka, Grunewald, Johan, Kullberg, Susanna, Rivera, Natalia V, Rossides, Marios, Werner, Joanna, Dincer, Irem, Koç, Gülcan, Yucesan, Canan, Ozdemir Kumbasar, Ozlem, Birring, Surinder, Boyd, Jeanette, Casimo, Leo, Huntley, Christopher, Kouranos, Vasileios, Newton, Jaqui, Spencer, Lisa, Spears, Mark, Barreras, Paula, Cozier, Yvette, Crouser, Elliott, Harper, Logan, James, W. Ennis, Maier, Lisa, Liao, Shu-Yi, Morgenthau, Adam, Obi, Ogugua Ndili, Patel, Divya, Rivera, Frank, Rossman, Milton D., Sharp, Michelle, Sharma, Maggie, Schupp, Jonas C., Stern, Barney J., Sweiss, Nadera, Tavee, Jinny, Zank, Daniel, Gumeniuk, Galyna, Gavrysyuk, Volodymyr, and Merenkova, Levgeniia

Published
2024
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10. Breaking barriers: holistic assessment of ability to work in patients with sarcoidosis

Author

Goh, Nicole, Holland, Anne, Hochreiter, Johann, Kock, Selene, Verheyen, Karolien, Verbraecken, Johan, Cantin, André, Gillson, Ashley, Hambly, Nathan, Kolb, Martin, Bendstrup, Elisabeth, Leistiko, Anna, Møller, Janne, Kaarteenaho, Riitta, Crestani, Bruno, Israël-Biet, Dominique, Cohen Aubart, Fleur, Nunes, Hilario, Valeyre, Dominique, Bonella, Francesco, Buschulte, Katharina, Costabel, Ulrich, Kortsen, Peter, Kreuter, Michael, Luedike, Peter, Quadder, Bernd, Braune, Renate, Skowasch, Dirk, Antoniou, Katerina, Bouros, Demosthenes, Gogali, Athena, Margaritopoulos, George A., Papakosta, Despoina, Papiris, Spyros A, Manali, Effrosyni D, Tzouvelekis, Argyris, Tzilas, Vasilios, Agrawal, Aditya, Kashyap, Surender, Tyagi, Vijay Narain, Unnati, Desai, Abedini, Atefeh, Phelan, Sean, Bargagli, Elena, Cinetto, Francesco, Confalonieri, Marco, Confalonieri, Paola, Harari, Sergio, Luppi, Fabrizio, Martone, Filippo, Palmieri, Anna, Rottoli, Paola, Salton, Francesco, Scarpa, Ricardo, Tana, Claudio, Tomassetti, Sara, Azuma, Arata, Inui, Naoki, Nakamura, Yutaro, Inoue, Yoshikazu, Tanino, Yoshinori, Muhammad, Noorul Afidza, van Beek, Frouke, den Boer, Lenze, Boomars, Karin, Bresser, Paul, Claessen, Laura, Elfferich, Marjon, Erckens, Roel, van Helmondt, Sanne, Karakaya, Bekir, Grutters, Jan C., Hoitsma, Elske, Illy, Károly, Jansen, Tim L, Kahlmann, Vivienne, Knoet, Chris, Korenromp, Ingrid, Lenssen, Ton, Maassen vd Brinkdrs, Karen, Mager, Johannes Jurgen, Marcellis, Rik, Miedema, Jelle, Möller, Trudeke, Moonen, Linda A.A., Moor, Karen, Mostard, Rémy L.M., Nienhuis, Willemien, Nossent, Esther, Paulus, Michelle, Ponds, Rudolf, Nossent, George, Quanjel, Marian, Rottenberg, Felix, van de Sande, Jonathan S.O., Segers, Ruud, Soechitram, Shalini D., van Staa, AnneLoes, Strookappe, Bert, Swaans, Martin, van den Toorn, Leon, van de Ven, Marjo J.T., Voortman, Mareye, Vorselaars, Adriane Dore Marie, Vente, Lenneke, Wijnen, Petal A., Wijsenbeek, Marlies, De Vries, Jolanda, van Zanten, Arthur, Durheim, Michael, Rasch-Halvorsen, Øystein, Tøndell, Anders, Dubaniewicz, Anna, Piotrowski, Wojciech, Roter, Bartlomiej, Robalo Cordeiro, Carlos, Alfaro, Tiago, Strambu, Irina, Vizel, Alexander, Cano, Rafael, Balcells, Eva, Castillo, Diego, Francesqui, Joel, Mañá, Juan, Molina, Maria, Ojanguren, Inigo, Rodriguez Portal, Jose Antonio, Sellares, Jacobo, Arkema, Elizabeth, Darlington, Pernilla, Eldhagen, Per, Elfström, Katinka, Grunewald, Johan, Kullberg, Susanna, Rivera, Natalia V, Rossides, Marios, Werner, Joanna, Dincer, Irem, Koç, Gülcan, Yucesan, Canan, Ozdemir Kumbasar, Ozlem, Birring, Surinder, Boyd, Jeanette, Casimo, Leo, Huntley, Christopher, Kouranos, Vasileios, Newton, Jaqui, Spencer, Lisa, Spears, Mark, Barreras, Paula, Cozier, Yvette, Crouser, Elliott, Harper, Logan, James, W. Ennis, Maier, Lisa, Liao, Shu-Yi, Morgenthau, Adam, Obi, Ogugua Ndili, Patel, Divya, Rivera, Frank, Rossman, Milton D., Sharp, Michelle, Sharma, Maggie, Schupp, Jonas C., Stern, Barney J., Sweiss, Nadera, Tavee, Jinny, Zank, Daniel, Gumeniuk, Galyna, Gavrysyuk, Volodymyr, Merenkova, Levgeniia, Drent, Marjolein, Russell, Anne-Marie, Saketkoo, Lesley Ann, Spagnolo, Paolo, Veltkamp, Marcel, and Wells, Athol U

Published
2024
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13. Prognostication of progressive pulmonary fibrosis in connective tissue disease-associated interstitial lung diseases: A cohort study

Author

Lab Reumatologie/Klinische Immunologie, Infection & Immunity, Cancer, CTI Meyaard, Longziekten, Arts-assistenten Radiologie, Regenerative Medicine and Stem Cells, JC onderzoeksprogramma Methodologie, MS Reumatologie/Immunologie/Infectie, Chiu, Yu Hsiang, Koops, Maaike F.M., Voortman, Mareye, van Es, H. Wouter, Langezaal, Lucianne C.M., Welsing, Paco M.J., Jamnitski, Anna, Wind, Anne E., van Laar, Jacob M., Grutters, Jan C., Spierings, Julia, Lab Reumatologie/Klinische Immunologie, Infection & Immunity, Cancer, CTI Meyaard, Longziekten, Arts-assistenten Radiologie, Regenerative Medicine and Stem Cells, JC onderzoeksprogramma Methodologie, MS Reumatologie/Immunologie/Infectie, Chiu, Yu Hsiang, Koops, Maaike F.M., Voortman, Mareye, van Es, H. Wouter, Langezaal, Lucianne C.M., Welsing, Paco M.J., Jamnitski, Anna, Wind, Anne E., van Laar, Jacob M., Grutters, Jan C., and Spierings, Julia

Published
2023

14. Prognostication of progressive pulmonary fibrosis in connective tissue disease-associated interstitial lung diseases: A cohort study

Author

Chiu, Yu-Hsiang, primary, Koops, Maaike F. M., additional, Voortman, Mareye, additional, van Es, H. Wouter, additional, Langezaal, Lucianne C. M., additional, Welsing, Paco M. J., additional, Jamnitski, Anna, additional, Wind, Anne E., additional, van Laar, Jacob M., additional, Grutters, Jan C., additional, and Spierings, Julia, additional

Published
2023
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18. Editorial introductions

Author

Longziekten, King, Christopher, Shlobin, Oksana A., Spagnolo, Paolo, Cottin, Vincent, Obi, Ogugua Ndili, Voortman, Mareye, Longziekten, King, Christopher, Shlobin, Oksana A., Spagnolo, Paolo, Cottin, Vincent, Obi, Ogugua Ndili, and Voortman, Mareye

Published
2022

19. Clinical features and immune-related protein patterns of anti-MDA5 positive clinically amyopathic dermatomyositis Dutch patients

Author

MS Interne Geneeskunde, CTI Bont, Infection & Immunity, CTI, CTI Computational Immunology Core, UMC Utrecht Holding, Longziekten, Arts Assistenten Longziekten, CDL Patiëntenzorg MI, CTI Research, Cancer, Hensgens, Marjolein P.M., Delemarre, Eveline M., Drylewicz, Julia, Voortman, Mareye, Krol, Roline M., Dalm, Virgil A.S.H., Miedema, Jelle R., Wiertz, Ivo, Grutters, Jan, Limper, Maarten, Nierkens, Stefan, Leavis, Helen L., MS Interne Geneeskunde, CTI Bont, Infection & Immunity, CTI, CTI Computational Immunology Core, UMC Utrecht Holding, Longziekten, Arts Assistenten Longziekten, CDL Patiëntenzorg MI, CTI Research, Cancer, Hensgens, Marjolein P.M., Delemarre, Eveline M., Drylewicz, Julia, Voortman, Mareye, Krol, Roline M., Dalm, Virgil A.S.H., Miedema, Jelle R., Wiertz, Ivo, Grutters, Jan, Limper, Maarten, Nierkens, Stefan, and Leavis, Helen L.

Published
2022

20. Clinical features and immune-related protein patterns of anti-MDA5 positive clinically amyopathic dermatomyositis Dutch patients

Author

Hensgens, Marjolein P M, primary, Delemarre, Eveline M, additional, Drylewicz, Julia, additional, Voortman, Mareye, additional, Krol, Roline M, additional, Dalm, Virgil A S H, additional, Miedema, Jelle R, additional, Wiertz, Ivo, additional, Grutters, Jan, additional, Limper, Maarten, additional, Nierkens, Stefan, additional, and Leavis, Helen L, additional

Published
2022
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21. The burden of neurosarcoidosis and small fiber neuropathy associated symptoms

Author

Voortman, Mareye, Voortman, Mareye, Voortman, Mareye, and Voortman, Mareye

Abstract

Sarcoidosis is a rare inflammatory disease that can affect many organs and may cause a variety of symptoms. Nervous system involvement, also known as neurosarcoidosis, occurs in 10-15%. The most common manifestations in the Netherlands were meningitis and cranial nerve dysfunction. In a European survey, fatigue and reduced energy levels were reported by almost all sarcoidosis patients (90%), followed by pain, pulmonary symptoms, memory, concentration and sleeping problems. Neurosarcoidosis patients reported even more cognitive failure than general sarcoidosis patients (56% vs 35%). In contrast to other manifestations, the majority of neurosarcoidosis patients (> 90%) require treatment. Hence having sarcoidosis affects not only the quality of life of the patient, but also that of the partners, it is important to involve them in the management as well.

Published
2019

22. Predictors for progressive fibrosis in patients with connective tissue disease associated interstitial lung diseases

Author

Lab Reumatologie/Klinische Immunologie, MS Reumatologie/Immunologie/Infectie, Infection & Immunity, MS Radiologie, Researchgr. Systems Radiology, Circulatory Health, Regenerative Medicine and Stem Cells, Cancer, Longziekten, Chiu, Yu Hsiang, Spierings, Julia, de Jong, Pim A., Hoesein, Firdaus Mohamed, Grutters, Jan C., van Laar, Jacob M., Voortman, Mareye, Lab Reumatologie/Klinische Immunologie, MS Reumatologie/Immunologie/Infectie, Infection & Immunity, MS Radiologie, Researchgr. Systems Radiology, Circulatory Health, Regenerative Medicine and Stem Cells, Cancer, Longziekten, Chiu, Yu Hsiang, Spierings, Julia, de Jong, Pim A., Hoesein, Firdaus Mohamed, Grutters, Jan C., van Laar, Jacob M., and Voortman, Mareye

Published
2021

26. Quality of Life of Couples Living with Sarcoidosis

Author

Voortman, Mareye, Hendriks, Celine M R, Lodder, Paul, Drent, Marjolein, De Vries, Jolanda, Voortman, Mareye, Hendriks, Celine M R, Lodder, Paul, Drent, Marjolein, and De Vries, Jolanda

Published
2019

27. Everyday cognitive failure in patients suffering from neurosarcoidosis

Author

Longziekten, Voortman, Mareye, De Vries, Jolanda, Hendriks, Celine M.R., Elfferich, Marjon D.P., Wijnen, Petal A.H.M., Drent, Marjolein, Longziekten, Voortman, Mareye, De Vries, Jolanda, Hendriks, Celine M.R., Elfferich, Marjon D.P., Wijnen, Petal A.H.M., and Drent, Marjolein

Published
2019

29. Quality of Life of Couples Living with Sarcoidosis

Author

Longziekten, Voortman, Mareye, Hendriks, Celine M R, Lodder, Paul, Drent, Marjolein, De Vries, Jolanda, Longziekten, Voortman, Mareye, Hendriks, Celine M R, Lodder, Paul, Drent, Marjolein, and De Vries, Jolanda

Published
2019

30. Clinical manifestations of neurosarcoidosis in the Netherlands

Author

Longziekten, Voortman, Mareye, Fritz, Daan, Vogels, OJM, van de Beek, D, De Vries, J, Brouwer, MC, Drent, M., Longziekten, Voortman, Mareye, Fritz, Daan, Vogels, OJM, van de Beek, D, De Vries, J, Brouwer, MC, and Drent, M.

Published
2019

31. Determination Of The Smallest Detectable Change (Sdc) And The Minimal Important Difference (Mid) For The Small Fiber Neuropathy Screening List (Sfnsl) In Sarcoidosis

Author

Voortman, Mareye, Beekman, Emmylou, Drent, Marjolein, Hoitsma, Elske, De Vries, Jolanda, Promovendi PHPC, RS: CAPHRI - R3 - Functioning, Participating and Rehabilitation, and Faculteit FHML Centraal

Subjects
Pulmonary and Respiratory Medicine, SYMPTOMS, Sarcoidosis, small fiber neuropathy, FATIGUE ASSESSMENT SCALE, DIAGNOSTIC-CRITERIA, QUESTIONNAIRE, smallest detectable change, VALIDATION, RESPONSIVENESS, minimal important difference (MID), Smallest detectable change, Internal Medicine, Immunology and Allergy, sarcoidosis, HEALTH-STATUS, neurosarcoidosis, Small fiber neuropathy screening list (SFNSL), ARA 290, smallest detectable change (SDC), minimal important difference, Minimal important difference, Small fiber neuropathy, METHODOLOGICAL QUALITY, SYSTEM, small fiber neuropathy screening list (SFNSL)
Abstract

Background: Previous studies found that 40-60% of the sarcoidosis patients suffer from small fiber neuropathy (SFN), substantially affecting quality of life. SFN is difficult to diagnose, as a gold standard is still lacking. The need for an easily administered screening instrument to identify sarcoidosis-associated SFN symptoms led to the development of the SFN Screening List (SFNSL). The usefulness of any questionnaire in clinical management and research trials depends on its interpretability. Obtaining a clinically relevant change score on a questionnaire requires that the smallest detectable change (SDC) and minimal important difference (MID) are known. Objectives: The aim of this study was to determine the SDC and MID for the SFNSL in patients with sarcoidosis. Methods: Patients with neurosarcoidosis and/or sarcoidosis-associated SFN symptoms (N=138) included in the online Dutch Neurosarcoidosis Registry participated in a prospective, longitudinal study. Anchor-based and distribution-based methods were used to estimate the MID and SDC, respectively. Results: The SFNSL was completed both at baseline and at 6-months' follow-up by 89/138 patients. A marginal ROC curve (0.6) indicated cut-off values of 3.5 points, with 73% sensitivity and 49% specificity for change. The SDC was 11.8 points. Conclusions: The MID on the SFNSL is 3.5 points for a clinically relevant change over a 6-month period. The MID can be used in the follow-up and management of SFN-associated symptoms in patients with sarcoidosis, though with some caution as the SDC was found to be higher.

Published
2018

36. Small fiber neuropathy

Author

Voortman, Mareye, primary, Fritz, Daan, additional, Vogels, Oscar J.M., additional, Eftimov, Filip, additional, van de Beek, Diederik, additional, Brouwer, Matthijs C., additional, and Drent, Marjolein, additional

Published
2017
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39. Images in COPD: Combined Pulmonary Emphysema and Fibrosis with Pulmonary Hypertension

Author

Arts-assistenten Radiologie, MS Radiologie, Infection & Immunity, Longziekten, Researchgr. Systems Radiology, Circulatory Health, Mohamed Hoesein, Firdaus, Voortman, Mareye, Kwakkel-van Erp, JM, Luijk, Bart, de Jong, Pim A, Arts-assistenten Radiologie, MS Radiologie, Infection & Immunity, Longziekten, Researchgr. Systems Radiology, Circulatory Health, Mohamed Hoesein, Firdaus, Voortman, Mareye, Kwakkel-van Erp, JM, Luijk, Bart, and de Jong, Pim A

Published
2017

40. Small fiber neuropathy: a disabling and underrecognized syndrome

Author

Longziekten, Voortman, Mareye, Fritz, Daan, Vogels, Oscar J M, Eftimov, Filip, van de Beek, Diederik, Brouwer, Matthijs C., Drent, Marjolein, Longziekten, Voortman, Mareye, Fritz, Daan, Vogels, Oscar J M, Eftimov, Filip, van de Beek, Diederik, Brouwer, Matthijs C., and Drent, Marjolein

Published
2017

42. Everyday cognitive failure in patients suffering from neurosarcoidosis.

Author

Voortman M, De Vries J, Hendriks CMR, Elfferich MDP, Wijnen PAHM, and Drent M

Subjects
Adult, Aged, Attention, Case-Control Studies, Central Nervous System Diseases diagnosis, Cognitive Dysfunction diagnosis, Cognitive Dysfunction psychology, Cross-Sectional Studies, Fatigue epidemiology, Female, Humans, Male, Memory Disorders diagnosis, Memory Disorders psychology, Middle Aged, Netherlands epidemiology, Prevalence, Prognosis, Risk Factors, Sarcoidosis diagnosis, Small Fiber Neuropathy epidemiology, Young Adult, Central Nervous System Diseases epidemiology, Cognition, Cognitive Dysfunction epidemiology, Memory, Memory Disorders epidemiology, Sarcoidosis epidemiology
Abstract

Background: Cognitive failure is associated with memory and concentration problems. Previously, a prevalence of one third was found in a general sarcoidosis population. The aim of this study was to assess if neurosarcoidosis patients are at higher risk for developing everyday cognitive failure using the Cognitive Failure Questionnaire (CFQ) and to determine what factors were associated with cognitive failure., Methods: A cross-sectional web-based survey was conducted from April to May 2017 in a national sample of neurosarcoidosis patients. The survey asked about complaints and included 3 questionnaires (Fatigue Assessment Scale [FAS], Small Fiber Neuropathy Screening List [SFNSL] and CFQ. Data were compared to a general sarcoidosis population., Results: Of the 152 patients who completed the survey, 131 had neurosarcoidosis. The mean CFQ score was significantly higher in the neurosarcoidosis (45.6±20.7) compared to the general sarcoidosis population (36.2±15.9; p< 0.0001). High CFQ scores (≥43) were found in 55.7% and 33.9%, respectively (p<0.0001). The FAS score (OR 21.4) and SFNSL score (OR 4.3) were the strongest positive predictors of a high CFQ score., Conclusion: Cognitive failure is a significant problem in neurosarcoidosis. More than half of the patients reported cognitive deficits, compared to one third of a general sarcoidosis population. Fatigue and small fiber neuropathy play a role in cognitive failure., (Copyright: © 2019.)

Published
2019
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43. Determination of the smallest detectable change (SDC) and the minimal important difference (MID) for the Small Fiber Neuropathy Screening List (SFNSL) in sarcoidosis.

Author

Voortman M, Beekman E, Drent M, Hoitsma E, and De Vries J

Abstract

Background: Previous studies found that 40-60% of the sarcoidosis patients suffer from small fiber neuropathy (SFN), substantially affecting quality of life. SFN is difficult to diagnose, as a gold standard is still lacking. The need for an easily administered screening instrument to identify sarcoidosis-associated SFN symptoms led to the development of the SFN Screening List (SFNSL). The usefulness of any questionnaire in clinical management and research trials depends on its interpretability. Obtaining a clinically relevant change score on a questionnaire requires that the smallest detectable change (SDC) and minimal important difference (MID) are known. Objectives: The aim of this study was to determine the SDC and MID for the SFNSL in patients with sarcoidosis. Methods : Patients with neurosarcoidosis and/or sarcoidosis-associated SFN symptoms (N=138) included in the online Dutch Neurosarcoidosis Registry participated in a prospective, longitudinal study. Anchor-based and distribution-based methods were used to estimate the MID and SDC, respectively. Results: The SFNSL was completed both at baseline and at 6-months' follow-up by 89/138 patients. A marginal ROC curve (0.6) indicated cut-off values of 3.5 points, with 73% sensitivity and 49% specificity for change. The SDC was 11.8 points. Conclusions: The MID on the SFNSL is 3.5 points for a clinically relevant change over a 6-month period. The MID can be used in the follow-up and management of SFN-associated symptoms in patients with sarcoidosis, though with some caution as the SDC was found to be higher. (Sarcoidosis Vasc Diffuse Lung Dis 2018; 35: 333-341) ., (Copyright: © 2018 SARCOIDOSIS VASCULITIS AND DIFFUSE LUNG DISEASES.)

Published
2018
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