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1. Evaluation of the psychometric properties of the EORTC chemotherapy-induced peripheral neuropathy questionnaire (QLQ-CIPN20)

Author

Kieffer, Jacobien M., Postma, Tjeerd J., van de Poll-Franse, Lonneke, Mols, Floortje, Heimans, Jan J., Cavaletti, Guido, Aaronson, Neil K., Cavaletti, G., Cornblath, D. R., Merkies, I. S. J., Postma, T. J., Valsecchi, M. G., Galimberti, S., Rossi, E., Cavaletti, G., Frigeni, B., Lanzani, F., Mattavelli, L., Piatti, M. L., Alberti, P., Binda, D., Bidoli, P., Cazzaniga, M., Cortinovis, D., Bruna, J., Velasco, R., Argyriou, A. A., Kalofonos, H. P., Psimaras, D., Ricard, D., Pace, A., Galiè, E., Briani, C., Lucchetta, M., Campagnolo, M., Torre, C. Dalla, Faber, C. G., Merkies, I. S. J., Vanhoutte, E. K., Bakkers, M., Brouwer, B., Boogerd, M., Lalisang, R. I., Boogerd, W., Brandsma, D., Koeppen, S., Hense, J., Grant, R., Storey, D., Kerrigan, S., Schenone, A., Reni, L., Piras, B., Fabbri, S., Pessino, A., Padua, L., Granata, G., Leandri, M., Ghignotti, I., Plasmati, R., Pastorelli, F., Postma, T. J., Heimans, J. J., Eurelings, M., Meijer, R. J., Grisold, W., Pozza, E. Lindeck, Mazzeo, A., Toscano, A., Russo, M., Tomasello, C., Altavilla, G., Prado, M. Penas, Gonzalez, C. Dominguez, Dorsey, S. G., and In Collaboration with the CI-PeriNomS Group

Published
2017
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2. Physician-assessed and patient-reported outcome measures in chemotherapy-induced sensory peripheral neurotoxicity: two sides of the same coin

Author

Cavaletti, G., Cornblath, D.R., Merkies, I.S.J., Postma, T.J., Valsecchi, M.G, Galimberti, S., Rossi, E., Frigeni, B., Lanzani, F., Mattavelli, L., Piatti, M.L., Alberti, P., Binda, D., Bidoli, P., Cazzaniga, M., Cortinovis, D., Bruna, J., Velasco, R., Argyriou, A.A., Kalofonos, H.P., Psimaras, D., Ricard, D., Pace, A., Galiè, E., Briani, C., Lucchetta, M., Campagnolo, M., Dalla Torre, C., Faber, C.G., Vanhoutte, E.K., Bakkers, M., Brouwer, B., Lalisang, R.I., Boogerd, W., Brandsma, D., Koeppen, S., Hense, J., Grant, R., Storey, D., Kerrigan, S., Schenone, A., Reni, L., Piras, B., Fabbri, S., Padua, L., Granata, G., Leandri, M., Ghignotti, I., Plasmati, R., Pastorelli, F., Heimans, J.J., Eurelings, M., Meijer, R.J., Grisold, W., Lindeck Pozza, E., Mazzeo, A., Toscano, A., Tomasello, C., Altavilla, G., Penas Prado, M., Dominguez Gonzalez, C., Dorsey, S.G., Brell, J.M., and Valsecchi, M.G.

Published
2014
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3. EULAR points to consider for the management of difficult-to-treat rheumatoid arthritis

Author

Nagy, G., Roodenrijs, N.M., Welsing, P.M., Kedves, M., Hamar, A., van der Goes, M.C., Kent, A., Bakkers, M., Pchelnikova, P., Blaas, E., Senolt, L., Szekanecz, Z., Choy, E., Dougados, M., Jacobs, J.W., Geenen, R., Bijlsma, J.W., Zink, A., Aletaha, D., Schoneveld, L., van Riel, P., Dumas, S., Prior, Y., Nikiphorou, E., Ferraccioli, G., Schett, G., Hyrich, K.L., Mueller-Ladner, U., Buch, M.H., McInnes, I.B., van der Heijde, D., van Laar, J.M., Nagy, G., Roodenrijs, N.M., Welsing, P.M., Kedves, M., Hamar, A., van der Goes, M.C., Kent, A., Bakkers, M., Pchelnikova, P., Blaas, E., Senolt, L., Szekanecz, Z., Choy, E., Dougados, M., Jacobs, J.W., Geenen, R., Bijlsma, J.W., Zink, A., Aletaha, D., Schoneveld, L., van Riel, P., Dumas, S., Prior, Y., Nikiphorou, E., Ferraccioli, G., Schett, G., Hyrich, K.L., Mueller-Ladner, U., Buch, M.H., McInnes, I.B., van der Heijde, D., and van Laar, J.M.

Abstract

Objective: To develop evidence- based European Alliance of Associations for Rheumatology (EULAR) points to consider (PtCs) for the management of difficult- to- treat rheumatoid arthritis (D2T RA). Methods: An EULAR Task Force was established comprising 34 individuals: 26 rheumatologists, patient partners and rheumatology experienced health professionals. Two systematic literature reviews addressed clinical questions around diagnostic challenges, and pharmacological and non- pharmacological therapeutic strategies in D2T RA. PtCs were formulated based on the identified evidence and expert opinion. Strength of recommendations (SoR, scale A–D: A typically consistent level 1 studies and D level 5 evidence or inconsistent studies) and level of agreement (LoA, scale 0–10: 0 completely disagree and 10 completely agree) of the PtCs were determined by the Task Force members. Results: Two overarching principles and 11 PtCs were defined concerning diagnostic confirmation of RA, evaluation of inflammatory disease activity, pharmacological and non- pharmacological interventions, treatment adherence, functional disability, pain, fatigue, goal setting and self- efficacy and the impact of comorbidities. The SoR varied from level C to level D. The mean LoA with the overarching principles and PtCs was generally high (8.4–9.6). Conclusions: These PtCs for D2T RA can serve as a clinical roadmap to support healthcare professionals and patients to deliver holistic management and more personalised pharmacological and non- pharmacological therapeutic strategies. High- quality evidence was scarce. A research agenda was created to guide future research

Published
2022

4. EULAR points to consider for the management of difficult-to-treat rheumatoid arthritis

Author

Leerstoel Geenen, Clinical Psychology (overkoepelend voor heel KP), Nagy, G., Roodenrijs, N.M., Welsing, P.M., Kedves, M., Hamar, A., van der Goes, M.C., Kent, A., Bakkers, M., Pchelnikova, P., Blaas, E., Senolt, L., Szekanecz, Z., Choy, E., Dougados, M., Jacobs, J.W., Geenen, R., Bijlsma, J.W., Zink, A., Aletaha, D., Schoneveld, L., van Riel, P., Dumas, S., Prior, Y., Nikiphorou, E., Ferraccioli, G., Schett, G., Hyrich, K.L., Mueller-Ladner, U., Buch, M.H., McInnes, I.B., van der Heijde, D., van Laar, J.M., Leerstoel Geenen, Clinical Psychology (overkoepelend voor heel KP), Nagy, G., Roodenrijs, N.M., Welsing, P.M., Kedves, M., Hamar, A., van der Goes, M.C., Kent, A., Bakkers, M., Pchelnikova, P., Blaas, E., Senolt, L., Szekanecz, Z., Choy, E., Dougados, M., Jacobs, J.W., Geenen, R., Bijlsma, J.W., Zink, A., Aletaha, D., Schoneveld, L., van Riel, P., Dumas, S., Prior, Y., Nikiphorou, E., Ferraccioli, G., Schett, G., Hyrich, K.L., Mueller-Ladner, U., Buch, M.H., McInnes, I.B., van der Heijde, D., and van Laar, J.M.

Published
2022

5. EULAR definition of difficult-to-treat rheumatoid arthritis

Author

Nagy, G., Roodenrijs, N.M., Welsing, P.M., Kedves, M., Hamar, A., van der Goes, M.C., Kent, A., Bakkers, M., Blaas, E., Senolt, L., Szekanecz, Z., Choy, E., Dougados, M., Jacobs, J.W., Geenen, R., Bijlsma, H.W., Zink, A., Aletaha, D., Schoneveld, L., van Riel, P., Gutermann, L., Prior, Y., Nikiphorou, E., Ferraccioli, G., Schett, G., Hyrich, K.L., Mueller-Ladner, U., Buch, M.H., McInnes, I.B., van der Heijde, D., van Laar, J.M., Leerstoel Geenen, Clinical Psychology (overkoepelend voor heel KP), Leerstoel Geenen, and Clinical Psychology (overkoepelend voor heel KP)

Subjects
musculoskeletal diseases, medicine.medical_specialty, rheumatoid, Advisory Committees, immune system diseases, Immunology, Drug Resistance, Arthritis, Biochemistry, General Biochemistry, Genetics and Molecular Biology, Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18], Arthritis, Rheumatoid, All institutes and research themes of the Radboud University Medical Center, Quality of life, Rheumatology, Stakeholder Participation, Synovitis, Terminology as Topic, Dmard therapy, medicine, Humans, Immunology and Allergy, Treatment Failure, Intensive care medicine, skin and connective tissue diseases, Glucocorticoids, Biological Products, business.industry, Task force, Biochemistry, Genetics and Molecular Biology(all), Recommendation, medicine.disease, Clinical trial, Europe, arthritis, Rheumatoid arthritis, Antirheumatic Agents, Practice Guidelines as Topic, Disease Progression, Drug Therapy, Combination, business, synovitis, Rheumatism, Genetics and Molecular Biology(all)
Abstract

BackgroundDespite treatment according to the current management recommendations, a significant proportion of patients with rheumatoid arthritis (RA) remain symptomatic. These patients can be considered to have ‘difficult-to-treat RA’. However, uniform terminology and an appropriate definition are lacking.ObjectiveThe Task Force in charge of the “Development of EULAR recommendations for the comprehensive management of difficult-to-treat rheumatoid arthritis” aims to create recommendations for this underserved patient group. Herein, we present the definition of difficult-to-treat RA, as the first step.MethodsThe Steering Committee drafted a definition with suggested terminology based on an international survey among rheumatologists. This was discussed and amended by the Task Force, including rheumatologists, nurses, health professionals and patients, at a face-to-face meeting until sufficient agreement was reached (assessed through voting).ResultsThe following three criteria were agreed by all Task Force members as mandatory elements of the definition of difficult-to-treat RA: (1) Treatment according to European League Against Rheumatism (EULAR) recommendation and failure of ≥2 biological disease-modifying antirheumatic drugs (DMARDs)/targeted synthetic DMARDs (with different mechanisms of action) after failing conventional synthetic DMARD therapy (unless contraindicated); (2) presence of at least one of the following: at least moderate disease activity; signs and/or symptoms suggestive of active disease; inability to taper glucocorticoid treatment; rapid radiographic progression; RA symptoms that are causing a reduction in quality of life; and (3) the management of signs and/or symptoms is perceived as problematic by the rheumatologist and/or the patient.ConclusionsThe proposed EULAR definition for difficult-to-treat RA can be used in clinical practice, clinical trials and can form a basis for future research.

Published
2021

6. EULAR definition of difficult-to-treat rheumatoid arthritis

Author

Leerstoel Geenen, Clinical Psychology (overkoepelend voor heel KP), Nagy, G., Roodenrijs, N.M., Welsing, P.M., Kedves, M., Hamar, A., van der Goes, M.C., Kent, A., Bakkers, M., Blaas, E., Senolt, L., Szekanecz, Z., Choy, E., Dougados, M., Jacobs, J.W., Geenen, R., Bijlsma, H.W., Zink, A., Aletaha, D., Schoneveld, L., van Riel, P., Gutermann, L., Prior, Y., Nikiphorou, E., Ferraccioli, G., Schett, G., Hyrich, K.L., Mueller-Ladner, U., Buch, M.H., McInnes, I.B., van der Heijde, D., van Laar, J.M., Leerstoel Geenen, Clinical Psychology (overkoepelend voor heel KP), Nagy, G., Roodenrijs, N.M., Welsing, P.M., Kedves, M., Hamar, A., van der Goes, M.C., Kent, A., Bakkers, M., Blaas, E., Senolt, L., Szekanecz, Z., Choy, E., Dougados, M., Jacobs, J.W., Geenen, R., Bijlsma, H.W., Zink, A., Aletaha, D., Schoneveld, L., van Riel, P., Gutermann, L., Prior, Y., Nikiphorou, E., Ferraccioli, G., Schett, G., Hyrich, K.L., Mueller-Ladner, U., Buch, M.H., McInnes, I.B., van der Heijde, D., and van Laar, J.M.

Published
2021

8. Physician-assessed and patient-reported outcome measures in chemotherapy-induced sensory peripheral neurotoxicity: two sides of the same coin

Author

Alberti, P., Rossi, E., Cornblath, D. R., Merkies, I. S. J., Postma, T. J., Frigeni, B., Bruna, J., Velasco, R., Argyriou, A. A., Kalofonos, H. P., Psimaras, D., Ricard, D., Pace, A., Galiè, E., Briani, C., Dalla Torre, C., Faber, C. G., Lalisang, R. I., Boogerd, W., Brandsma, D., Koeppen, S., Hense, J., Storey, D., Kerrigan, S., Schenone, A., Fabbri, S., Valsecchi, M. G., Cavaletti, G., Cavaletti, G., Cornblath, D.R., Merkies, I.S.J., Postma, T.J., Valsecchi, M.G, Galimberti, S., Rossi, E., Cavaletti, G., Frigeni, B., Lanzani, F., Mattavelli, L., Piatti, ML., Alberti, P., Binda, D., Bidoli, P.., Cazzaniga, M., Cortinovis, D., Bruna, J., Velasco, R., Argyriou, AA., Kalofonos, HP., Psimaras, D., Ricard, D., Pace, A., Galiè, E., Briani, C., Lucchetta, M., Campagnolo, M., Dalla Torre, C., Merkies, ISJ., Faber, CG., Merkies, ISJ., Vanhoutte, EK., Bakkers, M., Brouwer, B., Lalisang, RI., Boogerd, W., Brandsma, D., Koeppen, S., Hense, J., Grant, R., Storey, D., Kerrigan, S., Schenone, A., Reni, L., Piras, B., Fabbri, S., Padua, L., Granata, G., Leandri, M., Ghignotti, I., Plasmati, R.., Pastorelli, F., Postma, TJ., Heimans, JJ., Eurelings, M., Meijer, RJ., Grisold, W., Lindeck Pozza, E., Mazzeo, A., Toscano, A., Tomasello, C., Altavilla, G., Penas Prado, M., Dominguez Gonzalez, C., Dorsey, SG., and Brell, JM.

Published
2014
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9. The chemotherapy-induced peripheral neuropathy outcome measures standardization study: from consensus to the first validity and reliability findings

Author

Cavaletti, G., Cornblath, D. R., Merkies, I. S. J., Postma, T. J., Rossi, E., Frigeni, B., Alberti, P., Bruna, J., Velasco, R., Argyriou, A. A., Kalofonos, H. P., Psimaras, D., Ricard, D., Pace, A., Galiè, E., Briani, C., Dalla Torre, C., Faber, C. G., Lalisang, R. I., Boogerd, W., Brandsma, D., Koeppen, S., Hense, J., Storey, D., Kerrigan, S., Schenone, A., Fabbri, S., Valsecchi, M. G., Mazzeo, A., Pace, A., Pessino, A., Schenone, A., Toscano, A., Argyriou, A.A., Brouwer, B., Frigeni, B., Piras, B., Briani, C., Dalla Torre, C., Dominguez Gonzalez, C., Faber, C. G., Tomasello, C., Binda, D., Brandsma, D., Cortinovis, D., Psimaras, D., Ricard, D., Storey, D., Cornblath, D.R., Galiè, E., Lindeck Pozza, E., Rossi, E., Vanhoutte, E.K., Lanzani, F., Pastorelli, F., Altavilla, G., Cavaletti, G., Granata, G., Kalofonos, H.P., Ghignotti, I., Merkies, I.S.J., Bruna, J., Hense, J., Heimans, J.J., Mattavelli, L., Padua, L., Reni, L., Bakkers, M., Boogerd, M., Campagnolo, M., Cazzaniga, M., Eurelings, M., Leandri, M., Lucchetta, M., Penas Prado, M., Russo, M., Valsecchi, M.G., Piatti, M.L., Alberti, P., Bidoli, P., Grant, R., Plasmati, R., Velasco, R., Lalisang, R.I., Meijer, R.J., Fabbri, S., Dorsey, S. G., Galimberti, S., Kerrigan, S., Koeppen, S., Postma, T.J., Boogerd, W., and Grisold, W.

Published
2013
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11. PARE0007 PATIENT AND PUBLIC INVOLVEMENT IN CLINICAL TRIAL DESIGN

Author

De Souza, S., primary, Williams, R., additional, Johansson, E., additional, Zabalan, C., additional, Esterine, T., additional, Bakkers, M., additional, Roth, W., additional, MC Carthy, N., additional, Blake, M., additional, Karlfeldt, S., additional, Johannesson, M., additional, and Raza, K., additional

Published
2020
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13. Patient and rheumatologist perspectives on glucocorticoids: an exercise to improve the implementation of the European League Against Rheumatism (EULAR) recommendations on the management of systemic glucocorticoid therapy in rheumatic diseases

Author

van der Goes, M C, Jacobs, J W, Boers, M, Andrews, T, Blom-Bakkers, M A, Buttgereit, F, Caeyers, N, Choy, E H, Cutolo, M, Da Silva, J A, Guillevin, L, Holland, M, Kirwan, J R, Rovensky, J, Saag, K G, Severijns, G, Webber, S, Westhovens, R, and Bijlsma, J W

Published
2010
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15. Development of generic core competences of health professionals in rheumatology: a systematic literature review informing the 2018 EULAR recommendations

Author

Fragoulis, G.E., Edelaar, L., Vlieland, T.P.M.V., Iagnocco, A., Schafer, V.S., Haines, C., Schoones, J., Nikiphorou, E., Bakkers, M., Barbosa, L., Cikes, N., Ndosi, M., Primdahl, J., Prior, Y., Pchelnikova, P., Ritschl, V., Smucrova, H., Storronning, I., Testa, M., Wiek, D., and EULAR Task Forc

Abstract

Objective To identify generic competences on the desired knowledge, skills and of health professionals in rheumatology (HPRs) to inform the respective EULAR recommendations.Methods A systematic literature review was performed on the generic core competences ( defined as knowledge, skills or attitudes) of HPRs (nurses, physical therapists (PTs) or occupational therapists ( OTs)). Literature was obtained from electronic databases, published EULAR recommendations and via personal communication with representatives of national rheumatology societies and experts in the field. Qualitative, quantitative and mixed methods studies were included, and their methodological quality was scored using appropriate instruments.Results From 766 references reviewed, 79 fulfilled the inclusion criteria. Twenty studies addressed competences of multiple HPRs: 15 were of qualitative design, 1 quantitative, 1 mixed-methods, 2 systematic reviews and 1 opinion paper. The methodological quality of most studies was medium to high. Five studies concerned the development of a comprehensive set of competences. Key competences included: basic knowledge of rheumatic diseases, holistic approach to patient management, effective communication with colleagues and patients and provision of education to patients. The proposed competences were confirmed in studies focusing on one or more specific competences, on a rheumatic disease or on a specific profession (nurses, PTs or OTs).Conclusion Generic competences were identified for HPRs. Data were mostly derived from qualitative studies. All identified studies varied and were at national level, highlighting the need for the harmonisation of HPR competences across Europe. These findings underpin the development of EULAR recommendations for the core competences of HPRs.

Published
2019

18. 2016 update of the EULAR recommendations for the management of early arthritis

Author

Combe, B. (Bernard), Landewé, R.B.M. (Robert), Daien, C.I. (Claire I.), Hua, C. (Charlotte), Aletaha, D. (Daniel), álvaro-Gracia, J.M. (Jose María), Bakkers, M. (Margôt), Brodin, N. (Nina), Burmester, G.R. (Gerd), Codreanu, C. (Catalin), Conway, R. (Richard), Dougados, M. (Maxime), Emery, P. (Paul), Ferraccioli, G. (Gianfranco), Fonseca, J. (Joao), Raza, K. (Karim), Silva-Fernández, L. (Lucía), Smolen, J.S. (Josef), Skingle, D. (Diana), Szekanecz, Z. (Zoltan), Kvien, T.K. (Tore), Helm-van Mil, A.H.M. (Annette) van der, Van Vollenhoven, R.F. (Ronald F.), Combe, B. (Bernard), Landewé, R.B.M. (Robert), Daien, C.I. (Claire I.), Hua, C. (Charlotte), Aletaha, D. (Daniel), álvaro-Gracia, J.M. (Jose María), Bakkers, M. (Margôt), Brodin, N. (Nina), Burmester, G.R. (Gerd), Codreanu, C. (Catalin), Conway, R. (Richard), Dougados, M. (Maxime), Emery, P. (Paul), Ferraccioli, G. (Gianfranco), Fonseca, J. (Joao), Raza, K. (Karim), Silva-Fernández, L. (Lucía), Smolen, J.S. (Josef), Skingle, D. (Diana), Szekanecz, Z. (Zoltan), Kvien, T.K. (Tore), Helm-van Mil, A.H.M. (Annette) van der, and Van Vollenhoven, R.F. (Ronald F.)

Abstract

Objectives Since the 2007 recommendations for the management of early arthritis have been presented, considerable research has been published in the field of early arthritis, mandating an update of the 2007 European League Against Rheumatism (EULAR) recommendations for management of early arthritis. Methods In accordance with the 2014 EULAR Standardised Operating Procedures, the expert committee pursued an approach that was based on evidence in the literature and on expert opinion. The committee involved 20 rheumatologists, 2 patients and 1 healthcare professional representing 12 European countries. The group defined the focus of the expert committee and target population, formulated a definition of 'management' and selected the research questions. A systematic literature research (SLR) was performed by two fellows with the help of a skilled librarian. A set of draft recommendations was proposed on the basis of the research questions and the results of the SLR. For each recommendation, the categories of evidence were identified, the strength of recommendations was derived and the level of agreement was determined through a voting process. Results The updated recommendations comprise 3 overarching principles and 12 recommendations for managing early arthritis. The selected statements involve the recognition of arthritis, referral, diagnosis, prognostication, treatment (information, education, pharmacological and non-pharmacological interventions), monitoring and strategy. Eighteen items were identified as relevant for future research. Conclusions These recommendations provide rheumatologists, general practitioners, healthcare professionals, patients and other stakeholders with an updated EULAR consensus on the entire management of early arthritis.

Published
2017
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19. Evaluation of the psychometric properties of the EORTC chemotherapy-induced peripheral neuropathy questionnaire (QLQ-CIPN20)

Author

Kieffer, J, Postma, T, van de Poll Franse, L, Mols, F, Heimans, J, Cavaletti, G, Aaronson, N, Cornblath, D, Merkies, I, Valsecchi, M, Galimberti, S, Rossi, E, Frigeni, B, Lanzani, F, Mattavelli, L, Piatti, M, Alberti, P, Binda, D, Bidoli, P, Cazzaniga, M, Cortinovis, D, Bruna, J, Velasco, R, Argyriou, A, Kalofonos, H, Psimaras, D, Ricard, D, Pace, A, Galiã ̈, E, Briani, C, Lucchetta, M, Campagnolo, M, Torre, C, Faber, C, Vanhoutte, E, Bakkers, M, Brouwer, B, Boogerd, M, Lalisang, R, Boogerd, W, Brandsma, D, Koeppen, S, Hense, J, Grant, R, Storey, D, Kerrigan, S, Schenone, A, Reni, L, Piras, B, Fabbri, S, Pessino, A, Padua, L, Granata, G, Leandri, M, Ghignotti, I, Plasmati, R, Pastorelli, F, Eurelings, M, Meijer, R, Grisold, W, Pozza, E, Mazzeo, A, Toscano, A, Russo, M, Tomasello, C, Altavilla, G, Prado, M, Gonzalez, C, Dorsey, S, CAVALETTI, GUIDO ANGELO, VALSECCHI, MARIA GRAZIA, FRIGENI, BARBARA, LANZANI, FRANCESCA, MATTAVELLI, LAURA, ALBERTI, PAOLA, BINDA, DAVIDE, BIDOLI, PAOLO, CORTINOVIS, DIEGO LUIGI, Dorsey, S., Kieffer, J, Postma, T, van de Poll Franse, L, Mols, F, Heimans, J, Cavaletti, G, Aaronson, N, Cornblath, D, Merkies, I, Valsecchi, M, Galimberti, S, Rossi, E, Frigeni, B, Lanzani, F, Mattavelli, L, Piatti, M, Alberti, P, Binda, D, Bidoli, P, Cazzaniga, M, Cortinovis, D, Bruna, J, Velasco, R, Argyriou, A, Kalofonos, H, Psimaras, D, Ricard, D, Pace, A, Galiã ̈, E, Briani, C, Lucchetta, M, Campagnolo, M, Torre, C, Faber, C, Vanhoutte, E, Bakkers, M, Brouwer, B, Boogerd, M, Lalisang, R, Boogerd, W, Brandsma, D, Koeppen, S, Hense, J, Grant, R, Storey, D, Kerrigan, S, Schenone, A, Reni, L, Piras, B, Fabbri, S, Pessino, A, Padua, L, Granata, G, Leandri, M, Ghignotti, I, Plasmati, R, Pastorelli, F, Eurelings, M, Meijer, R, Grisold, W, Pozza, E, Mazzeo, A, Toscano, A, Russo, M, Tomasello, C, Altavilla, G, Prado, M, Gonzalez, C, Dorsey, S, CAVALETTI, GUIDO ANGELO, VALSECCHI, MARIA GRAZIA, FRIGENI, BARBARA, LANZANI, FRANCESCA, MATTAVELLI, LAURA, ALBERTI, PAOLA, BINDA, DAVIDE, BIDOLI, PAOLO, CORTINOVIS, DIEGO LUIGI, and Dorsey, S.

Abstract

To investigate the scale structure and psychometrics of the EORTC chemotherapy-induced peripheral neuropathy module (QLQ-CIPN20).Using confirmatory factor analyses (CFA), we tested two hypothesized scale structure models of the QLQ-CIPN20 in 473 patients with non-small cell lung cancer, 281 patients with heterogeneous cancer diagnoses, and 500 patients with colorectal cancer. We also modeled the two hypothesized models as bi-factor models. These included a general factor, in addition to the specific domain factors. Additional models were investigated with exploratory factor analysis (EFA). Known groups validity was evaluated where justified.CFA could not confirm the two hypothesized models (Model 1: CFI < 0.926; TLI < 0.914; RMSEA > 0.077 and Model 2: CFI < 0.906; TLI < 0.887; RMSEA > 0.105) in any of the three samples. Including a general factor to these two hypothesized models to produce a bi-factor model also did not yield satisfactory results. Using EFA, we identified four different factor structures in the three samples that were unstable due to cross loadings of the items. When scoring the QLQ-CIPN20 as a simple, additive checklist evidence was found for known groups validity in the first two samples based on Common Toxicity Criteria (CTC-AE), and in the third sample based on exposure to CIPN-inducing chemotherapy.Neither CFA nor EFA yielded support for a stable subscale structure for the QLQ-CIPN20. Scoring the questionnaire as a simple additive checklist results in acceptable validity.

Published
2017

20. Evaluation of the psychometric properties of the EORTC chemotherapy-induced peripheral neuropathy questionnaire (QLQ-CIPN20)

Author

Kieffer, J. M., Postma, T. J., van de Poll-Franse, L., Mols, F., Heimans, J. J., Cavaletti, G., Aaronson, N. K., Cornblath, D. R., Merkies, I. S. J., Valsecchi, M. G., Galimberti, S., Rossi, E., Frigeni, B., Lanzani, F., Mattavelli, L., Piatti, M. L., Alberti, P., Binda, D., Bidoli, P., Cazzaniga, M., Cortinovis, D., Bruna, J., Velasco, R., Argyriou, A. A., Kalofonos, H. P., Psimaras, D., Ricard, D., Pace, A., Galie, E., Briani, C., Lucchetta, M., Campagnolo, M., Torre, C. D., Faber, C. G., Vanhoutte, E. K., Bakkers, M., Brouwer, B., Boogerd, M., Lalisang, R. I., Boogerd, W., Brandsma, D., Koeppen, S., Hense, J., Grant, R., Storey, D., Kerrigan, S., Schenone, A., Reni, L., Piras, B., Fabbri, S., Pessino, A., Padua, L., Granata, G., Leandri, M., Ghignotti, I., Plasmati, R., Pastorelli, F., Eurelings, M., Meijer, R. J., Grisold, W., Pozza, E. L., Mazzeo, A., Toscano, A., Russo, M., Tomasello, C., Altavilla, G., Prado, M. P., Gonzalez, C. D., Dorsey, S. G., Padua L. (ORCID:0000-0003-2570-9326), Kieffer, J. M., Postma, T. J., van de Poll-Franse, L., Mols, F., Heimans, J. J., Cavaletti, G., Aaronson, N. K., Cornblath, D. R., Merkies, I. S. J., Valsecchi, M. G., Galimberti, S., Rossi, E., Frigeni, B., Lanzani, F., Mattavelli, L., Piatti, M. L., Alberti, P., Binda, D., Bidoli, P., Cazzaniga, M., Cortinovis, D., Bruna, J., Velasco, R., Argyriou, A. A., Kalofonos, H. P., Psimaras, D., Ricard, D., Pace, A., Galie, E., Briani, C., Lucchetta, M., Campagnolo, M., Torre, C. D., Faber, C. G., Vanhoutte, E. K., Bakkers, M., Brouwer, B., Boogerd, M., Lalisang, R. I., Boogerd, W., Brandsma, D., Koeppen, S., Hense, J., Grant, R., Storey, D., Kerrigan, S., Schenone, A., Reni, L., Piras, B., Fabbri, S., Pessino, A., Padua, L., Granata, G., Leandri, M., Ghignotti, I., Plasmati, R., Pastorelli, F., Eurelings, M., Meijer, R. J., Grisold, W., Pozza, E. L., Mazzeo, A., Toscano, A., Russo, M., Tomasello, C., Altavilla, G., Prado, M. P., Gonzalez, C. D., Dorsey, S. G., and Padua L. (ORCID:0000-0003-2570-9326)

Abstract

Purpose: To investigate the scale structure and psychometrics of the EORTC chemotherapy-induced peripheral neuropathy module (QLQ-CIPN20). Methods: Using confirmatory factor analyses (CFA), we tested two hypothesized scale structure models of the QLQ-CIPN20 in 473 patients with non-small cell lung cancer, 281 patients with heterogeneous cancer diagnoses, and 500 patients with colorectal cancer. We also modeled the two hypothesized models as bi-factor models. These included a general factor, in addition to the specific domain factors. Additional models were investigated with exploratory factor analysis (EFA). Known groups validity was evaluated where justified. Results: CFA could not confirm the two hypothesized models (Model 1: CFI < 0.926; TLI < 0.914; RMSEA > 0.077 and Model 2: CFI < 0.906; TLI < 0.887; RMSEA > 0.105) in any of the three samples. Including a general factor to these two hypothesized models to produce a bi-factor model also did not yield satisfactory results. Using EFA, we identified four different factor structures in the three samples that were unstable due to cross loadings of the items. When scoring the QLQ-CIPN20 as a simple, additive checklist evidence was found for known groups validity in the first two samples based on Common Toxicity Criteria (CTC-AE), and in the third sample based on exposure to CIPN-inducing chemotherapy. Conclusions: Neither CFA nor EFA yielded support for a stable subscale structure for the QLQ-CIPN20. Scoring the questionnaire as a simple additive checklist results in acceptable validity.

Published
2017

21. Rasch-Transformed Total Neuropathy Score clinical version (RT-TNSc©) in patients with chemotherapy-induced peripheral neuropathy

Author

Binda, D, Cavaletti, G, Cornblath, Dr, Merkies, Is, CI PeriNomS, Sg, Postma, Tj, Valsecchi, Mg, Galimberti, S, Rossi, E, Frigeni, B, Lanzani, F, Mattavelli, L, Piatti, Ml, Alberti, P, Bidoli, P, Cazzaniga, M, Cortinovis, D, Bruna, J, Velasco, R, Argyriou, Aa, Kalofonos, Hp, Psimaras, D, Ricard, D, Pace, A, Galiè, E, Briani, C, Lucchetta, M, Campagnolo, M, Dalla Torre, C, Faber, Cg, Vanhoutte, Ek, Bakkers, M, Brouwer, B, Boogerd, M, Lalisang, Ri, Boogerd, W, Brandsma, D, Koeppen, S, Grant, R, Storey, D, Kerrigan, S, Schenone, Angelo, Reni, L, Piras, B, Fabbri, S, Pessino, A, Padua, L, Granata, G, Leandri, M, Ghignotti, I, Plasmati, R, Pastorelli, F, Heimans, Jj, Eurelings, M, Meijer, Rj, Josef, Kf, Grisold, W, Lindeck Pozza, E, Mazzeo, A, Toscano, A, Russo, M, Tomasello, C, Altavilla, G, Penas Prado, M, Dominguez Gonzalez, C, Dorsey, S. g., RS: GROW - Oncology, RS: GROW - R3 - Innovative Cancer Diagnostics & Therapy, Binda, D, Cavaletti, G, Cornblath, D, Merkies, I, Valsecchi, M, and Bidoli, P

Subjects
Rasch analysi, Male, psychometrics, medicine.medical_specialty, peripheral neuropathy, Drug-Related Side Effects and Adverse Reactions, Psychometrics, psychometric, chemotherapy, Rasch analysis, total neuropathy score, Neurology (clinical), Neuroscience (all), Severity of Illness Index, Age Factors, Female, Humans, Peripheral Nervous System Diseases, Quality of Life, Retrospective Studies, Disability Evaluation, Medicine (all), Physical medicine and rehabilitation, Quality of life, Severity of illness, Medicine, Balance (ability), Rasch model, business.industry, General Neuroscience, Retrospective cohort study, medicine.disease, Peripheral neuropathy, Chemotherapy-induced peripheral neuropathy, Physical therapy, business
Abstract

Composite scales such as the Total Neuropathy Score clinical version (TNSc(©) ) have been widely used to measure neurological impairment in a standardized manner but they have been criticized due to their ordinal setting having no fixed unit. This study aims to improve impairment assessment in patients with chemotherapy-induced peripheral neuropathy (CIPN) by subjecting TNSc(©) records to Rasch analyses. In particular, we wanted to investigate the influence of factors affecting the use of the TNSc(©) in clinical practice. TNSc(©) has 7 domains (sensory, motor, autonomic, pin-prick, vibration, strength, and deep tendon reflexes [DTR]) each being scored 0-4. Data obtained in 281 patients with stable CIPN were subjected to Rasch analyses to determine the fit to the model. The TNSc(©) did not meet Rasch model's expectations primarily because of misfit statistics in autonomic and DTR domains. Removing these two, acceptable model fit and uni-dimensionality were obtained. However, disordered thresholds (vibration and strength) and item bias (mainly cultural) were still seen, but these findings were kept to balance the assessment range of the Rasch-Transformed TNSc(©) (RT-TNSc(©) ). Acceptable reliability findings were also obtained. A 5-domains RT-TNSc(©) may be a more proper assessment tool in patients with CIPN. Future studies are needed to examine its responsive properties.

Published
2015

22. Grip strength comparison in immune-mediated neuropathies: Vigorimeter vs. Jamar

Author

Draak, THP, Pruppers, MHJ, Nes, Sonja, Vanhoutte, EK, Bakkers, M (Mayienne), Gorson, KC, van der Pol, WL, Lewis, RA, Notermans, NC, Nobile-Orazio, E, Leger, JM, Van den Bergh, PYK, Lauria, G, Bril, V, Katzberg, H, Lunn, MPT, Pouget, J, van der Kooi, AJ, van den Berg, LH, van Doorn, Pieter, Cornblath, DR, Hahn, AF, Faber, CG, Merkies, ISJ (Ingemar), Amsterdam Neuroscience, Neurology, Amsterdam institute for Infection and Immunity, 05 Neurology and psychiatry, MUMC+: DA KG Polikliniek (9), RS: MHeNs - R1 - Cognitive Neuropsychiatry and Clinical Neuroscience, and Klinische Neurowetenschappen

Subjects
grip strength, Jamar dynamometer, responsiveness comparison, Vigorimeter
Abstract

The Jamar dynamometer and Vigorimeter have been used to assess grip strength in immune-mediated neuropathies, but have never been compared to each other. Therefore, we performed a comparison study between these two devices in patients with immune-mediated neuropathies. Grip strength data were collected in 102 cross-sectional stable and 163 longitudinal (new diagnoses or changing condition) patients with Guillain-Barré syndrome (GBS), chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), gammopathy-related polyneuropathy (MGUSP), and multifocal motor neuropathy (MMN). Stable patients were assessed twice (validity/reliability studies). Longitudinal patients were assessed 3-5 times during 1 year. Responsiveness comparison between the two tools was examined using combined anchor-/distribution-based minimum clinically important difference (MCID) techniques. Patients were asked to indicate their preference for the Jamar or Vigorimeter. Both tools correlated highly with each other (ρ = 0.86, p

Published
2015

23. Revising two-point discrimination assessment in normal aging and in patients with polyneuropathies

Author

Van Nes, Si, Faber, Cg, Hamers, Rm, Harschnitz, O, Bakkers, M, Hermans, Mc, Meijer, Rj, Van Doorn, Pa, Merkies, Is, Bennett, D, Van Den Berg, Lh, Van Den Bergh, Py, Cornblath, Dr, Dalakas, M, Gorson, Kc, Hadden, Rd, Hahn, Af, Hughes, Ra, Lauria, G, Léger, Jm, Lewis, Ra, Lunn, Pt, Nobile Orazio, E, Notermans, Nc, Padua, Luca, and Reilly, Mm

Subjects
Settore MED/26 - NEUROLOGIA, polyneuropathies
Published
2008

24. [Small fibre neuropathy: knowledge is power].

Author

Hoeijmakers, J.G.J., Bakkers, M., Blom, E.W., Drenth, J.P.H., Merkies, I.S., Faber, C.G., Hoeijmakers, J.G.J., Bakkers, M., Blom, E.W., Drenth, J.P.H., Merkies, I.S., and Faber, C.G.

Abstract

Item does not contain fulltext, Small fibre neuropathy is a neuropathy of the small non-myelinated C-fibres and myelinated Adelta-fibres. Clinically, an isolated small fibre neuropathy is distinguished by sensory and autonomic symptoms, with practically no abnormalities on neurological examination other than possible distorted pain and temperature sensation. Specific diagnostic tests for small fibre neuropathy are skin biopsy, including a count of the intra-epidermal small nerve fibres that cross the basal membrane, and quantitative sensory and autonomic testing. Diabetes mellitus is the most frequent underlying cause of small fibre neuropathy. Other causes can be classified into the following categories: toxic (e.g. alcohol), metabolic, immune-mediated, infectious and hereditary. Recently, in a substantial proportion (29%) of a group of patients with idiopathic small fibre neuropathy, a SCN9A gene mutation was demonstrated, which leads to hyperexcitability of the dorsal root ganglion neurons. Treatment of small fibre neuropathy consists of symptomatic pain relief and, if possible, treatment of the underlying cause of the condition.

Published
2012

25. Pain relief and quality-of-life improvement after spinal cord stimulation in painful diabetic polyneuropathy: a pilot study

Author

Pluijms, W.A., Slangen, R., Bakkers, M., Faber, C.G., Merkies, I.S., Kessels, A.G., Dirksen, C.D., Joosten, E.A.J., Reulen, J.P., Dongen, R.T. van, Schaper, N.C., Kleef, M. van, Pluijms, W.A., Slangen, R., Bakkers, M., Faber, C.G., Merkies, I.S., Kessels, A.G., Dirksen, C.D., Joosten, E.A.J., Reulen, J.P., Dongen, R.T. van, Schaper, N.C., and Kleef, M. van

Abstract

Item does not contain fulltext

Published
2012

26. Pain and autonomic dysfunction in patients with sarcoidosis and small fibre neuropathy

Author

Bakkers, M (Mayienne), Faber, CG, Drent, M, Hermans, MCE, Nes, Sonja, Lauria, G, De Baets, M, Merkies, ISJ (Ingemar), Bakkers, M (Mayienne), Faber, CG, Drent, M, Hermans, MCE, Nes, Sonja, Lauria, G, De Baets, M, and Merkies, ISJ (Ingemar)

Abstract

Small fibre neuropathy (SFN) has been demonstrated in sarcoidosis. However, a systematic analysis of neuropathic pain and autonomic symptoms, key features of SFN, has not been performed. Clinimetric evaluation of pain and autonomic symptoms using the neuropathic pain scale (NPS) and the modified Composite Autonomic Symptoms Scale (mCOMPASS) was used in sarcoidosis patients for this study. A total of 91 sarcoidosis patients (n = 23 without SFN symptoms, n = 43 with SFN symptoms but normal intraepidermal nerve fibre density (IENFD), n = 25 with SFN symptoms and reduced IENFD) were examined. NPS and mCOMPASS were assessed twice (reliability studies). Severity of pain was compared between the subgroups. Correlation between NPS and a visual analogue pain scale (VAS) was assessed (validity studies). Healthy controls (n = 105) completed the mCOMPASS for comparison with patients' scores. Patients with sarcoidosis, SFN complaints, and reduced IENFD demonstrated more severe pain scores on the NPS. The mCOMPASS differentiated between subjects with and without SFN symptoms. A significant correlation was obtained between the NPS and VAS, indicating good construct validity. Good reliability values were obtained for all scales. The use of the NPS to evaluate SFN symptoms is suggested, as it shows differences between patients with SFN symptoms with normal or reduced IENFD values. The mCOMPASS might be used to select patients for further testing.

Published
2010

27. Rasch-built Overall Disability Scale for patients with chemotherapy-induced peripheral neuropathy (CIPN-R-ODS)

Author

Binda, D., primary, Vanhoutte, E.K., additional, Cavaletti, G., additional, Cornblath, D.R., additional, Postma, T.J., additional, Frigeni, B., additional, Alberti, P., additional, Bruna, J., additional, Velasco, R., additional, Argyriou, A.A., additional, Kalofonos, H.P., additional, Psimaras, D., additional, Ricard, D., additional, Pace, A., additional, Galiè, E., additional, Briani, C., additional, Dalla Torre, C., additional, Lalisang, R.I., additional, Boogerd, W., additional, Brandsma, D., additional, Koeppen, S., additional, Hense, J., additional, Storey, D., additional, Kerrigan, S., additional, Schenone, A., additional, Fabbri, S., additional, Rossi, E., additional, Valsecchi, M.G., additional, Faber, C.G., additional, Merkies, I.S.J., additional, Galimberti, S., additional, Lanzani, F., additional, Mattavelli, L., additional, Piatti, M.L., additional, Bidoli, P., additional, Cazzaniga, M., additional, Cortinovis, D., additional, Lucchetta, M., additional, Campagnolo, M., additional, Bakkers, M., additional, Brouwer, B., additional, Grant, R., additional, Reni, L., additional, Piras, B., additional, Pessino, A., additional, Padua, L., additional, Granata, G., additional, Leandri, M., additional, Ghignotti, I., additional, Plasmati, R., additional, Pastorelli, F., additional, Heimans, J.J., additional, Eurelings, M., additional, Meijer, R.J., additional, Grisold, W., additional, Lindeck Pozza, E., additional, Mazzeo, A., additional, Toscano, A., additional, Russo, M., additional, Tomasello, C., additional, Altavilla, G., additional, Penas Prado, M., additional, Dominguez Gonzalez, C., additional, and Dorsey, S.G., additional

Published
2013
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33. Patient and rheumatologist perspectives on glucocorticoids: an exercise to improve the implementation of the European League Against Rheumatism (EULAR) recommendations on the management of systemic glucocorticoid therapy in rheumatic diseases

Author

van der Goes, M C, primary, Jacobs, J W G, additional, Boers, M, additional, Andrews, T, additional, Blom-Bakkers, M A M, additional, Buttgereit, F, additional, Caeyers, N, additional, Choy, E H, additional, Cutolo, M, additional, Da Silva, J A P, additional, Guillevin, L, additional, Holland, M, additional, Kirwan, J R, additional, Rovensky, J, additional, Saag, K G, additional, Severijns, G, additional, Webber, S, additional, Westhovens, R, additional, and Bijlsma, J W J, additional

Published
2009
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34. EULAR points to consider for the management of difficult-to-treat rheumatoid arthritis.

Author

Nagy G, Roodenrijs NMT, Welsing PMJ, Kedves M, Hamar A, van der Goes MC, Kent A, Bakkers M, Pchelnikova P, Blaas E, Senolt L, Szekanecz Z, Choy EH, Dougados M, Jacobs JW, Geenen R, Bijlsma JW, Zink A, Aletaha D, Schoneveld L, van Riel P, Dumas S, Prior Y, Nikiphorou E, Ferraccioli G, Schett G, Hyrich KL, Mueller-Ladner U, Buch MH, McInnes IB, van der Heijde D, and van Laar JM

Subjects
Antirheumatic Agents administration & dosage, Arthritis, Rheumatoid complications, Arthritis, Rheumatoid diagnosis, Arthritis, Rheumatoid therapy, Cognitive Behavioral Therapy, Comorbidity, Exercise, Hepatitis B complications, Hepatitis B drug therapy, Hepatitis C complications, Hepatitis C drug therapy, Humans, Medication Adherence, Patient Education as Topic, Symptom Assessment, Antirheumatic Agents therapeutic use, Arthritis, Rheumatoid drug therapy
Abstract

Objective: To develop evidence-based European Alliance of Associations for Rheumatology (EULAR) points to consider (PtCs) for the management of difficult-to-treat rheumatoid arthritis (D2T RA)., Methods: An EULAR Task Force was established comprising 34 individuals: 26 rheumatologists, patient partners and rheumatology experienced health professionals. Two systematic literature reviews addressed clinical questions around diagnostic challenges, and pharmacological and non-pharmacological therapeutic strategies in D2T RA. PtCs were formulated based on the identified evidence and expert opinion. Strength of recommendations (SoR, scale A-D: A typically consistent level 1 studies and D level 5 evidence or inconsistent studies) and level of agreement (LoA, scale 0-10: 0 completely disagree and 10 completely agree) of the PtCs were determined by the Task Force members., Results: Two overarching principles and 11 PtCs were defined concerning diagnostic confirmation of RA, evaluation of inflammatory disease activity, pharmacological and non-pharmacological interventions, treatment adherence, functional disability, pain, fatigue, goal setting and self-efficacy and the impact of comorbidities. The SoR varied from level C to level D. The mean LoA with the overarching principles and PtCs was generally high (8.4-9.6)., Conclusions: These PtCs for D2T RA can serve as a clinical roadmap to support healthcare professionals and patients to deliver holistic management and more personalised pharmacological and non-pharmacological therapeutic strategies. High-quality evidence was scarce. A research agenda was created to guide future research., Competing Interests: Competing interests: Participants provided declaration of interest, the individual declarations will be attached as online supplemental file., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Published
2022
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35. 2019 EULAR points to consider for non-physician health professionals to prevent and manage fragility fractures in adults 50 years or older.

Author

Adams J, Wilson N, Hurkmans E, Bakkers M, Balážová P, Baxter M, Blavnsfeldt AB, Briot K, Chiari C, Cooper C, Dragoi RG, Gäbler G, Lems W, Mosor E, Pais S, Simon C, Studenic P, Tilley S, de la Torre-Aboki J, and Stamm TA

Subjects
Advisory Committees, Aged, Aged, 80 and over, Europe, Humans, Medication Adherence, Middle Aged, Nurses, Nutritionists, Occupational Therapists, Osteoporosis complications, Osteoporotic Fractures etiology, Osteoporotic Fractures therapy, Pharmacists, Physical Therapists, Primary Prevention, Rheumatology, Risk Assessment, Smoking Cessation, Accidental Falls prevention & control, Bone Density Conservation Agents therapeutic use, Dietary Supplements, Exercise, Health Personnel, Osteoporosis therapy, Osteoporotic Fractures prevention & control, Self-Help Devices
Abstract

Objective: To establish European League Against Rheumatism (EULAR) points to consider for non-physician health professionals to prevent and manage fragility fractures in adults 50 years or older., Methods: Points to consider were developed in accordance with EULAR standard operating procedures for EULAR-endorsed recommendations, led by an international multidisciplinary task force, including patient research partners and different health professionals from 10 European countries. Level of evidence and strength of recommendation were determined for each point to consider, and the mean level of agreement among the task force members was calculated., Results: Two overarching principles and seven points to consider were formulated based on scientific evidence and the expert opinion of the task force. The two overarching principles focus on shared decisions between patients and non-physician health professionals and involvement of different non-physician health professionals in prevention and management of fragility fractures. Four points to consider relate to prevention: identification of patients at risk of fracture, fall risk evaluation, multicomponent interventions to prevent primary fracture and discouragement of smoking and overuse of alcohol. The remaining three focus on management of fragility fractures: exercise and nutritional interventions, the organisation and coordination of multidisciplinary services for post-fracture models of care and adherence to anti-osteoporosis medicines. The mean level of agreement among the task force for the overarching principles and the points to consider ranged between 8.4 and 9.6., Conclusion: These first EULAR points to consider for non-physician health professionals to prevent and manage fragility fractures in adults 50 years or older serve to guide healthcare practice and education., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.)

Published
2021
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36. EULAR definition of difficult-to-treat rheumatoid arthritis.

Author

Nagy G, Roodenrijs NMT, Welsing PM, Kedves M, Hamar A, van der Goes MC, Kent A, Bakkers M, Blaas E, Senolt L, Szekanecz Z, Choy E, Dougados M, Jacobs JW, Geenen R, Bijlsma HW, Zink A, Aletaha D, Schoneveld L, van Riel P, Gutermann L, Prior Y, Nikiphorou E, Ferraccioli G, Schett G, Hyrich KL, Mueller-Ladner U, Buch MH, McInnes IB, van der Heijde D, and van Laar JM

Subjects
Advisory Committees, Arthritis, Rheumatoid diagnostic imaging, Arthritis, Rheumatoid physiopathology, Disease Progression, Drug Resistance, Drug Therapy, Combination, Europe, Humans, Practice Guidelines as Topic, Rheumatology, Stakeholder Participation, Terminology as Topic, Treatment Failure, Antirheumatic Agents therapeutic use, Arthritis, Rheumatoid drug therapy, Biological Products therapeutic use, Glucocorticoids therapeutic use
Abstract

Background: Despite treatment according to the current management recommendations, a significant proportion of patients with rheumatoid arthritis (RA) remain symptomatic. These patients can be considered to have 'difficult-to-treat RA'. However, uniform terminology and an appropriate definition are lacking., Objective: The Task Force in charge of the " Development of EULAR recommendations for the comprehensive management of difficult-to-treat rheumatoid arthritis" aims to create recommendations for this underserved patient group. Herein, we present the definition of difficult-to-treat RA, as the first step., Methods: The Steering Committee drafted a definition with suggested terminology based on an international survey among rheumatologists. This was discussed and amended by the Task Force, including rheumatologists, nurses, health professionals and patients, at a face-to-face meeting until sufficient agreement was reached (assessed through voting)., Results: The following three criteria were agreed by all Task Force members as mandatory elements of the definition of difficult-to-treat RA: (1) Treatment according to European League Against Rheumatism (EULAR) recommendation and failure of ≥2 biological disease-modifying antirheumatic drugs (DMARDs)/targeted synthetic DMARDs (with different mechanisms of action) after failing conventional synthetic DMARD therapy (unless contraindicated); (2) presence of at least one of the following: at least moderate disease activity; signs and/or symptoms suggestive of active disease; inability to taper glucocorticoid treatment; rapid radiographic progression; RA symptoms that are causing a reduction in quality of life; and (3) the management of signs and/or symptoms is perceived as problematic by the rheumatologist and/or the patient., Conclusions: The proposed EULAR definition for difficult-to-treat RA can be used in clinical practice, clinical trials and can form a basis for future research., Competing Interests: Competing interests: All participants provided declaration of interest, the individual declarations are attached as online supplemental file 2., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Published
2021
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37. 2019 EULAR recommendations for the generic core competences of health professionals in rheumatology.

Author

Edelaar L, Nikiphorou E, Fragoulis GE, Iagnocco A, Haines C, Bakkers M, Barbosa L, Cikes N, Ndosi M, Primdahl J, Prior Y, Pchelnikova P, Ritschl V, Schäfer VS, Smucrova H, Storrønning I, Testa M, Wiek D, and Vliet Vlieland TPM

Subjects
Humans, Clinical Competence standards, Nurses standards, Occupational Therapists standards, Physical Therapists standards, Rheumatology standards
Abstract

Background/objectives: To maintain and optimise the quality of care provided by health professionals in rheumatology (HPRs), adequate educational offerings are needed. This task force (TF) aimed to develop evidence-based recommendations for the generic core competences of HPRs, with specific reference to nurses, physical therapists (PTs) and occupational therapists (OTs) to serve as a basis for their postgraduate education., Methods: The EULAR standardised operating procedures for the development of recommendations were followed. A TF including rheumatologists, nurses, PTs, OTs, patient-representatives, an educationalist, methodologists and researchers from 12 countries met twice. In the first TF meeting, 13 research questions were defined to support a systematic literature review (SLR). In the second meeting, the SLR evidence was discussed and recommendations formulated. Subsequently, level of evidence and strength of recommendation were assigned and level of agreement (LoA) determined (0-10 rating scale)., Results: Three overarching principles were identified and 10 recommendations were developed for the generic core competences of HPRs. The SLR included 79 full-text papers, 20 of which addressed the competences, knowledge, skills, attitudes and/or educational needs of HPRs from multiple professions. The average LoA for each recommendation ranged from 9.42 to 9.79. Consensus was reached both on a research and educational agenda., Conclusion: Evidence and expert opinion informed a set of recommendations providing guidance on the generic core competences of HPRs. Implementation of these recommendations in the postgraduate education of HPRs at the international and national level is advised, considering variation in healthcare systems and professional roles., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.)

Published
2020
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38. Prevention and management of osteoporotic fractures by non-physician health professionals: a systematic literature review to inform EULAR points to consider.

Author

Wilson N, Hurkmans E, Adams J, Bakkers M, Balážová P, Baxter M, Blavnsfeldt AB, Briot K, Chiari C, Cooper C, Dragoi R, Gäbler G, Lems W, Mosor E, Pais S, Simon C, Studenic P, Tilley S, de la Torre J, and Stamm TA

Subjects
Exercise, Humans, Medication Adherence, Nurses, Nutritionists, Occupational Therapists, Osteoporosis complications, Osteoporotic Fractures etiology, Osteoporotic Fractures therapy, Pharmacists, Physical Therapists, Practice Guidelines as Topic, Primary Prevention, Randomized Controlled Trials as Topic, Accidental Falls prevention & control, Bone Density Conservation Agents therapeutic use, Dietary Supplements, Health Personnel, Osteoporosis therapy, Osteoporotic Fractures prevention & control
Abstract

Objective: To perform a systematic literature review (SLR) about the effect of non-pharmacological interventions delivered by non-physician health professionals to prevent and manage osteoporotic fractures., Methods: Eight clinical questions based on two criteria guided the SLR: (1) adults≥50 years at high risk of osteoporotic fracture and (2) interventions delivered by non-physician health professionals to prevent and manage osteoporotic fractures. Interventions focused on diagnostic procedures to identify risk of falling, therapeutic approaches and implementation strategies. Outcomes included fractures, falls, risk of falling and change in bone mineral density. Systematic reviews and randomised controlled trials were preferentially selected. Data were synthesised using a qualitative descriptive approach., Results: Of 15 917 records, 43 articles were included. Studies were clinically and methodologically diverse. We identified sufficient evidence that structured exercise, incorporating progressive resistance training delivered to people who had undergone hip fracture surgery, and multicomponent exercise, delivered to people at risk of primary fracture, reduced risk of falling. The effectiveness of multidisciplinary fracture liaison services in reducing refracture rate was confirmed. There was insufficient evidence found to support the effectiveness of nutrients and falls prevention programmes in this patient population., Conclusion: Despite study heterogeneity, our SLR showed beneficial effects of some interventions delivered by non-physician health professionals and the positive impact of multidisciplinary team working and patient educational approaches to prevent and manage osteoporotic fractures. These results informed a EULAR taskforce that developed points to consider for non-physician health professionals to prevent and manage osteoporotic fractures., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Published
2020
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39. 2016 update of the EULAR recommendations for the management of early arthritis.

Author

Combe B, Landewe R, Daien CI, Hua C, Aletaha D, Álvaro-Gracia JM, Bakkers M, Brodin N, Burmester GR, Codreanu C, Conway R, Dougados M, Emery P, Ferraccioli G, Fonseca J, Raza K, Silva-Fernández L, Smolen JS, Skingle D, Szekanecz Z, Kvien TK, van der Helm-van Mil A, and van Vollenhoven R

Subjects
Anti-Inflammatory Agents, Non-Steroidal therapeutic use, Arthritis therapy, Exercise Therapy, Glucocorticoids therapeutic use, Humans, Life Style, Occupational Therapy, Antirheumatic Agents therapeutic use, Arthritis diagnosis, Arthritis drug therapy
Abstract

Objectives: Since the 2007 recommendations for the management of early arthritis have been presented, considerable research has been published in the field of early arthritis, mandating an update of the 2007 European League Against Rheumatism (EULAR) recommendations for management of early arthritis., Methods: In accordance with the 2014 EULAR Standardised Operating Procedures, the expert committee pursued an approach that was based on evidence in the literature and on expert opinion. The committee involved 20 rheumatologists, 2 patients and 1 healthcare professional representing 12 European countries. The group defined the focus of the expert committee and target population, formulated a definition of 'management' and selected the research questions. A systematic literature research (SLR) was performed by two fellows with the help of a skilled librarian. A set of draft recommendations was proposed on the basis of the research questions and the results of the SLR. For each recommendation, the categories of evidence were identified, the strength of recommendations was derived and the level of agreement was determined through a voting process., Results: The updated recommendations comprise 3 overarching principles and 12 recommendations for managing early arthritis. The selected statements involve the recognition of arthritis, referral, diagnosis, prognostication, treatment (information, education, pharmacological and non-pharmacological interventions), monitoring and strategy. Eighteen items were identified as relevant for future research., Conclusions: These recommendations provide rheumatologists, general practitioners, healthcare professionals, patients and other stakeholders with an updated EULAR consensus on the entire management of early arthritis., Competing Interests: Competing interests: All the participants in this initiative have disclosed conflict of interest. The individual declaration of conflict of interest is available on demand at the European League Against Rheumatism secretariat and is summarised below: BC has received honoraria from BMS, Janssen, Eli Lilly, Merck, Novartis, Pfizer, Roche-Chugai, Sanofi and UCB, and research grants from Pfizer, Roche-Chugai and UCB. RL has received honoraria and/or research grants from AbbVie, Ablynx, Amgen, AstraZeneca, Bristol-Myers Squibb, Celgene, Janssen, Galapagos, GlaxoSmithKline (GSK), Novartis, Novo-Nordisk, Merck, Pfizer, Roche, Schering-Plough, TiGenix, UCB. RL is director of Rheumatology Consultancy BV. CID has received honoraria from BMS, Merck, Pfizer, Roche-Chugai and UCB. DA has received honoraria from AbbVie, BMS, Centocor, Janssen, Eli Lilly, Medac, Merck, Pfizer, Roche and UCB. JMA-G has received honoraria from AbbVie, BMS, MSD, Novartis, Pfizer, Roche, Sanofi and UCB, and research grants from MSD, Pfizer, Roche and UCB. GRB has received honoraria from AbbVie, BMS, Janssen, Eli Lilly, MSD, Novartis, Pfizer, Roche-Chugai and UCB, and research grants from Pfizer, Roche-Chugai and UCB. CC has received speaker and consulting fees from AbbVie, Amgen, Angellini, AstraZeneca, Bristol-Myers Squibb, Egis, MSD, Pfizer, Richter, Roche, Sanofi, Servier, Teva, UCB, Zentiva. RC has received honoraria from AbbVie, Roche, Pfizer and Amgen. MD has received honorarium fees for participating at advisory boards or symposia organised by Pfizer, AbbVie, UCB, Roche, Eli Lilly, Novartis, Sanofi, Merck, BMS. His department has received research grants from Pfizer, AbbVie, UCB, Roche, Eli Lilly, Novartis, Sanofi, Merck, BMS. PE has provided expert advice for AbbVie, AstraZeneca, BMS, Eli Lilly, Merck, Novartis, Pfizer, Roche, Sandoz, Samsung, UCB. GF has received honoraria from AbbVie, Pfizer, MSD, Roche, Janssen, Eli Lilly, UCB and research grants from Roche, MSD. JF has received unrestricted research grants or acted as a speaker for AbbVie, Amgen, BMS, Biogen, Celltrion, Celgene, Hospira, Janssen, MSD, Novartis, Novo-Nordisk, Pfizer, Roche, UCB. KR has received honoraria from AbbVie, Pfizer, Roche and Janssen and research grants from AbbVie. JSS has received grants for his institution from AbbVie, Janssen, Eli Lilly, MSD, Pfizer, Roche and has provided expert advice to and/or had speaking engagements for AbbVie, Amgen, AstraZeneca, Astro, Celgene, Celltrion, GSK, ILTOO, Janssen, Eli Lilly, Medimmune, MSD, Novartis-Sandoz, Pfizer, Roche, Samsung, Sanofi, UCB. ZS has received consultant and speakers fees from AbbVie, MSD, Bristol-Myers Squibb, Roche, Pfizer. TKK has received fees for speaking and/or consulting from Biogen, BMS, Boehringer Ingelheim, Celltrion, Eli Lilly, Epirus, Hospira, Merck-Serono, Novartis, Orion Pharma, Pfizer, Sandoz and UCB. RvV has received research support and grants from AbbVie, Amgen, BMS, GSK, Pfizer, Roche, UCB, and honoraria for consultancy from AbbVie, Biotest, BMS, Celgene, Crescendo, GSK, Janssen, Eli Lilly, Merck, Novartis, Pfizer, Roche, UCB, Vertex., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

Published
2017
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40. Grip strength comparison in immune-mediated neuropathies: Vigorimeter vs. Jamar.

Author

Draak TH, Pruppers MH, van Nes SI, Vanhoutte EK, Bakkers M, Gorson KC, Van der Pol WL, Lewis RA, Notermans NC, Nobile-Orazio E, Léger JM, Van den Bergh PY, Lauria G, Bril V, Katzberg H, Lunn MP, Pouget J, van der Kooi AJ, van den Berg LH, van Doorn PA, Cornblath DR, Hahn AF, Faber CG, and Merkies IS

Subjects
Adult, Aged, Aged, 80 and over, Analysis of Variance, Cross-Sectional Studies, Female, Humans, Longitudinal Studies, Male, Middle Aged, Reproducibility of Results, Statistics, Nonparametric, Hand Strength physiology, Muscle Strength Dynamometer, Peripheral Nervous System Diseases immunology, Peripheral Nervous System Diseases physiopathology
Abstract

The Jamar dynamometer and Vigorimeter have been used to assess grip strength in immune-mediated neuropathies, but have never been compared to each other. Therefore, we performed a comparison study between these two devices in patients with immune-mediated neuropathies. Grip strength data were collected in 102 cross-sectional stable and 163 longitudinal (new diagnoses or changing condition) patients with Guillain-Barré syndrome (GBS), chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), gammopathy-related polyneuropathy (MGUSP), and multifocal motor neuropathy (MMN). Stable patients were assessed twice (validity/reliability studies). Longitudinal patients were assessed 3-5 times during 1 year. Responsiveness comparison between the two tools was examined using combined anchor-/distribution-based minimum clinically important difference (MCID) techniques. Patients were asked to indicate their preference for the Jamar or Vigorimeter. Both tools correlated highly with each other (ρ = 0.86, p < 0.0001) and showed good intra-class correlation coefficients (Jamar [Right/Left hands]: ICC 0.997/0.96; Vigori: ICC 0.95/0.98). Meaningful changes were comparable between the two instruments, being higher in GBS compared to CIDP patients. In MGUSP/MMN poor responsiveness was seen. Significant more patients preferred the Vigorimeter. In conclusion, validity, reliability, and responsiveness aspects were comparable between the Jamar dynamometer and Vigorimeter. However, based on patients' preference, the Vigorimeter is recommended in future studies in immune-mediated neuropathies., (© 2015 Peripheral Nerve Society.)

Published
2015
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41. Improving assessment in small fiber neuropathy.

Author

Brouwer BA, Bakkers M, Hoeijmakers JG, Faber CG, and Merkies IS

Subjects
Adult, Aged, Aged, 80 and over, Cohort Studies, Female, Humans, Male, Middle Aged, Psychometrics, Reproducibility of Results, Surveys and Questionnaires, Young Adult, Disabled Persons, Erythromelalgia diagnosis, Erythromelalgia physiopathology, Outcome Assessment, Health Care methods, Severity of Illness Index
Abstract

Interval measures at the impairment level addressing symptoms and at the activity/participation level addressing daily and social restrictions have not been developed for small fiber neuropathy (SFN). We developed an SFN-specific Rasch-built overall disability scale (SFN-RODS©), an activity/participation scale at the interval level. A preliminary SFN-RODS containing 146 activity/participation items was assessed twice (reliability studies) in 238 patients with SFN. The ordinal-based 13-item SFN-symptoms inventory questionnaire (SFN-SIQ©) and pain-visual-analogue-scale were also assessed (validity studies). The pre-SFN-RODS and SFN-SIQ data were subjected to the Rasch analyses. The pre-SFN-RODS did not meet Rasch model expectations. Based on requirements, such as misfit statistics, differential item functioning, and local dependency, items were systematically removed and model fit improved. Finally, a 32-item SFN-RODS© scale was constructed that fulfilled all Rasch requirements, demonstrating acceptable reliability and validity scores. The 13-item SFN-SIQ© was successfully transformed to an interval Rasch-built measure fulfilling model's requirements. In conclusion, the 32-item SFN-RODS© is a disease-specific interval measure suitable for detecting activity limitations and participation restrictions in patients with SFN. The 13-item SFN-SIQ© was transformed through Rasch to an interval measure. The use of these scales is recommended in future clinical interventional trials involving patients with SFN., (© 2015 Peripheral Nerve Society.)

Published
2015
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42. Optimizing temperature threshold testing in small-fiber neuropathy.

Author

Bakkers M, Faber CG, Reulen JP, Hoeijmakers JG, Vanhoutte EK, and Merkies IS

Subjects
Adolescent, Adult, Aged, Aged, 80 and over, Biopsy, Erythromelalgia pathology, Female, Foot innervation, Hand innervation, Humans, Logistic Models, Male, Middle Aged, ROC Curve, Retrospective Studies, Skin pathology, Young Adult, Erythromelalgia diagnosis, Erythromelalgia physiopathology, Sensory Thresholds physiology, Temperature
Abstract

Introduction: We examined optimization of a temperature threshold testing (TTT) protocol for patients with suspected small-fiber neuropathy (SFN) to lessen the burden for both patients and technicians, without sacrificing accuracy., Methods: Data from 81 patients with SFN (skin biopsy and TTT abnormal) and 81 without SFN (skin biopsy and TTT normal) were used. Warm, cold, and heat pain sensation thresholds were determined bilaterally on the thenar eminence and foot dorsum by methods of limits and levels. Diagnostic accuracy was determined for various sensory modality combinations through comparative corresponding area under the receiver-operator characteristic curves., Results: Assessment of warm and cold thresholds in all extremities by the method of levels showed the best discriminatory ability (area under the curve 0.95, sensitivity 84.2%, specificity 93.8%)., Conclusions: These assessments are suggested for TTT examination in possible SFN patients. By applying this combination, the time needed for TTT can be reduced, maintaining diagnostic accuracy., (© 2014 Wiley Periodicals, Inc.)

Published
2015
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43. Contact heat evoked potentials: normal values and use in small-fiber neuropathy.

Author

Lagerburg V, Bakkers M, Bouwhuis A, Hoeijmakers JG, Smit AM, Van Den Berg SJ, Hordijk-De Boer I, Brouwer-Van Der Lee MD, Kranendonk D, Reulen JP, Faber CG, and Merkies IS

Subjects
Adult, Aged, Aging physiology, Ankle, Female, Humans, Male, Middle Aged, Observer Variation, Reference Values, Reproducibility of Results, Retrospective Studies, Sex Factors, Wrist, Erythromelalgia diagnosis, Erythromelalgia physiopathology, Evoked Potentials, Somatosensory physiology, Hot Temperature, Reaction Time physiology, Skin innervation
Abstract

Introduction: Contact heat evoked potentials (CHEPs) may be an objective, non-invasive diagnostic tool in small-fiber neuropathy (SFN). This study establishes normal CHEP values and examines their applicability in SFN patients., Methods: Standardized CHEPs were administered at the wrist and ankle. The N2 and P2 latencies and N2 -P2 peak-peak amplitude were recorded by electroencephalography. We examined healthy subjects (n = 97), stratified by age and gender, and SFN patients with abnormal intraepidermal nerve fiber density (n = 42). CHEP reproducibility and interobserver values were also investigated., Results: CHEP normative values were determined. There was a 9-16% increase in latency per centimeter of height with increasing age. Amplitudes were higher in women than men, and decreased (17-71%) with aging. Test-retest reproducibility and interobserver values were >0.61 and >0.96, respectively. CHEPs were abnormal in 73.8% of the patients., Conclusion: In this study we have established normal values, reliability, and clinical applicability of CHEPs in SFN., (© 2014 Wiley Periodicals, Inc.)

Published
2015
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44. Small fibers, large impact: quality of life in small-fiber neuropathy.

Author

Bakkers M, Faber CG, Hoeijmakers JG, Lauria G, and Merkies IS

Subjects
Adolescent, Adult, Aged, Aged, 80 and over, Antibodies, Antinuclear blood, Female, Humans, Male, Middle Aged, Nerve Fibers pathology, Pain etiology, Regression Analysis, Retrospective Studies, Sensory Thresholds physiology, Surveys and Questionnaires, Thyrotropin blood, Visual Analog Scale, Young Adult, Nerve Fibers physiology, Peripheral Nervous System Diseases complications, Peripheral Nervous System Diseases pathology, Peripheral Nervous System Diseases psychology, Quality of Life
Abstract

Introduction: The impact of small-fiber neuropathy (SFN) on patients' quality of life (QOL) has not been studied extensively. Our aim was to determine the impact of SFN on QOL and examine possible determinants., Methods: We examined a total of 265 patients diagnosed with SFN. The SFN Symptoms Inventory Questionnaire (SFN-SIQ), the pain Visual Analog Scale (VAS), and the generic SF-36 Health Survey were assessed. Regression studies were undertaken to evaluate determinants of functioning., Results: SFN patients demonstrated a severe overall reduction in QOL. The biggest deficits were in Role Functioning-Physical, Body Pain, and Physical Component Summary (PCS) scores. VAS scores, changed sweating pattern, dry mouth, and age were the strongest predictors for PCS, explaining 32% of the QOL decrease., Conclusions: SFN leads to a reduction in overall QOL. The presence of pain and some autonomic symptoms explained only a small portion of the findings., (Copyright © 2013 Wiley Periodicals, Inc.)

Published
2014
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45. Temperature threshold testing: a systematic review.

Author

Bakkers M, Faber CG, Peters MJ, Reulen JP, Franssen H, Fischer TZ, and Merkies IS

Subjects
Animals, Humans, Peripheral Nervous System Diseases diagnosis, Peripheral Nervous System Diseases physiopathology, Sensory Thresholds physiology, Temperature, Thermosensing physiology
Abstract

The diagnosis of small fiber neuropathy (SFN) has been recently defined as typical symptoms due to small nerve fiber dysfunction accompanied by reduced intra-epidermal nerve fiber density (IENFD) or abnormal temperature threshold testing (TTT). Guidelines have been published for the assessment of IENFD. However, international guidelines for TTT are lacking. This paper presents a systematic literature review on reported TTT methods and provides recommendations for its future use in studies evaluating patients. A total of 164 papers fulfilled pre-defined requirements and were selected for review. Over 15 types of instruments are currently being used with a variety of methodological approaches for location, stimulus application, and sensation qualities examined. Consensus is needed to standardize the use of TTT as a diagnostic and follow-up tool in patients., (© 2013 Peripheral Nerve Society.)

Published
2013
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46. Small fiber neuropathy in Fabry disease.

Author

Biegstraaten M, Hollak CE, Bakkers M, Faber CG, Aerts JM, and van Schaik IN

Subjects
Age Factors, Enzyme Replacement Therapy, Humans, Neuralgia etiology, Polyneuropathies diagnosis, Polyneuropathies therapy, Sex Factors, Fabry Disease complications, Nerve Fibers pathology, Polyneuropathies etiology
Abstract

Previous studies have explicitly shown that small nerve fibers are affected in Fabry disease which is assumed to cause the severe neuropathic pain that patients may have from childhood on. Neuropathic pain and small fiber neuropathy characteristics have therefore been considered as appropriate study endpoints in studies on the efficacy of enzyme replacement therapy. However, the relationship between small fiber neuropathy characteristics and pain, as well as the course of small fiber neuropathy in Fabry disease is still uncertain. In this article a comprehensive overview of the existing literature on small nerve fiber function and structure and the relationship with pain, age and disease severity is presented supplemented with data from the Dutch Fabry cohort, with the aim to identify consensus as well as controversies and to propose a hypothesis on the evolution of neuropathy in Fabry disease., (Copyright © 2012 Elsevier Inc. All rights reserved.)

Published
2012
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47. [Small fibre neuropathy: knowledge is power].

Author

Hoeijmakers JG, Bakkers M, Blom EW, Drenth JP, Merkies IS, and Faber CG

Subjects
Diagnostic Techniques, Neurological, Humans, Mutation, Neural Conduction, Pain prevention & control, Peripheral Nervous System Diseases genetics, Peripheral Nervous System Diseases therapy, Sensation Disorders genetics, Sensation Disorders therapy, Sensory Thresholds, Thermosensing, Nerve Fibers pathology, Pain etiology, Peripheral Nervous System Diseases diagnosis, Sensation Disorders diagnosis
Abstract

Small fibre neuropathy is a neuropathy of the small non-myelinated C-fibres and myelinated Aδ-fibres. Clinically, an isolated small fibre neuropathy is distinguished by sensory and autonomic symptoms, with practically no abnormalities on neurological examination other than possible distorted pain and temperature sensation. Specific diagnostic tests for small fibre neuropathy are skin biopsy, including a count of the intra-epidermal small nerve fibres that cross the basal membrane, and quantitative sensory and autonomic testing. Diabetes mellitus is the most frequent underlying cause of small fibre neuropathy. Other causes can be classified into the following categories: toxic (e.g. alcohol), metabolic, immune-mediated, infectious and hereditary. Recently, in a substantial proportion (29%) of a group of patients with idiopathic small fibre neuropathy, a SCN9A gene mutation was demonstrated, which leads to hyperexcitability of the dorsal root ganglion neurons. Treatment of small fibre neuropathy consists of symptomatic pain relief and, if possible, treatment of the underlying cause of the condition.

Published
2012

48. Revised normative values for grip strength with the Jamar dynamometer.

Author

Peters MJ, van Nes SI, Vanhoutte EK, Bakkers M, van Doorn PA, Merkies IS, and Faber CG

Subjects
Adult, Aged, Aged, 80 and over, Female, Humans, Male, Middle Aged, Reference Values, Young Adult, Hand Strength physiology, Muscle Strength Dynamometer standards
Abstract

The Jamar dynamometer has been widely used in various chronic illnesses and has demonstrated its strength as a potential prognostic indicator. Various stratified normative values have been published using different methodologies, leading to conflicting results. No study used statistical techniques considering the non-Gaussian distribution of the obtained grip strength (GS) values. Jamar GS was assessed in 720 healthy participants, subdivided into seven age decade groups consisting of at least 50 men and 50 women each. Normative values (median and fifth values) were calculated using quantile regressions with restricted cubic spline functions on age. Possible confounding personal factors (hand dominance, length, weight, hobby, and job categorization) were examined. Clinically applicable revised normative values for the Jamar dynamometer, stratified for age and gender, are presented. Hand dominance had no influence. Other personal factors only minimally influenced final values. This study provides revised normative GS values for the Jamar dynamometer., (© 2011 Peripheral Nerve Society.)

Published
2011
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49. Peripheral neuropathy in myotonic dystrophy type 1.

Author

Hermans MC, Faber CG, Vanhoutte EK, Bakkers M, De Baets MH, de Die-Smulders CE, and Merkies IS

Subjects
Adult, Electrophysiology, Female, Humans, Male, Middle Aged, Myotonic Dystrophy complications, Myotonic Dystrophy physiopathology, Neural Conduction physiology, Neurologic Examination, Peripheral Nervous System Diseases physiopathology, Peripheral Nervous System Diseases etiology
Abstract

Myotonic dystrophy 1 (DM1) is characterized by a wide range of clinical features. We aimed to verify the presence of peripheral nerve involvement in a large cohort of DM1 patients and to determine clinical consequences. A total of 93 patients underwent detailed neurological examination and nerve conduction studies. Additionally, balance impairment was assessed with the Berg Balance Scale and health status was evaluated with the SF-36 health survey. Sensory symptoms were not reported and mild sensory signs were found in six patients. Electrophysiological abnormalities consistent with a diagnosis of neuropathy were found in 16 patients (17%). Peripheral nerve involvement was significantly associated with decreased muscle strength (p = 0.001) and absence of Achilles-tendon reflexes (p = 0.003), but not with age or duration of neuromuscular symptoms. It had no significant effect on balance, mental or physical health. In conclusion, peripheral nerve involvement may be one of the multisystemic manifestations of DM1, but is usually subclinical. Other causes should be excluded when sensory symptoms or signs are severe., (© 2011 Peripheral Nerve Society.)

Published
2011
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50. Intraepidermal nerve fiber density at the distal leg: a worldwide normative reference study.

Author

Lauria G, Bakkers M, Schmitz C, Lombardi R, Penza P, Devigili G, Smith AG, Hsieh ST, Mellgren SI, Umapathi T, Ziegler D, Faber CG, and Merkies IS

Subjects
Adult, Age Factors, Aged, Aged, 80 and over, Female, Humans, Male, Middle Aged, Reference Values, Young Adult, Biopsy methods, Epidermis innervation, Leg innervation, Nerve Fibers
Abstract

The diagnostic reliability of skin biopsy in small fiber neuropathy depends on the availability of normative reference values. We performed a multicenter study to assess the normative values of intraepidermal nerve fiber (IENF) density at distal leg stratified by age deciles. Eight skin biopsy laboratories from Europe, USA, and Asia submitted eligible data. Inclusion criteria of raw data were healthy subjects 18 years or older; known age and gender; 3-mm skin biopsy performed 10-cm above the lateral malleolus; bright-field immunohistochemistry protocol, and quantification of linear IENF density in three 50-µm sections according to published guidelines. Data on height and weight were recorded, and body mass index (BMI) was calculated in subjects with both available data. Normative IENF density reference values were calculated through quantile regression analysis; influence of height, weight, or BMI was determined by regression analyses. IENF densities from 550 participants (285 women, 265 men) were pooled. We found a significant age-dependent decrease of IENF density in both genders (women p < 0.001; men p = 0.002). Height, weight, or BMI did not influence the calculated 5th percentile IENF normative densities in both genders. Our study provides IENF density normative reference values at the distal leg to be used in clinical practice., (© 2010 Peripheral Nerve Society.)

Published
2010
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