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8. Evaluation of Measurement Properties and Differential Item Functioning in the English and French Versions of the University of California, Los Angeles, Loneliness Scale‐6: A Scleroderma Patient‐Centered Intervention Network (SPIN) Study

Author

S. Rapoport, Chelsea, Choi, Alyssa K., Kwakkenbos, Linda, Carrier, Marie‐Eve, Henry, Richard S., Mouthon, Luc, Roesch, Scott C., Thombs, Brett D., Malcarne, Vanessa L., Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Nielsen, Karen, Sauvé, Maureen, Richard, Michelle, Welling, Joep, Varga, John, Adams, Claire E., Ayala, Mara Cañedo, Cook, Vanessa, Hu, Sophie, Nassar, Elsa‐Lynn, Neyer, Marieke Alexandra, Nordlund, Julia, Provencher, Sabrina, Bartlett, Susan J., Hudson, Marie, Benedetti, Andrea, Gottesman, Karen, Hummers, Laura K., Lawrie‐Jones, Amanda, Mayes, Maureen D., Assassi, Shervin, Nielson, Warren R., El‐Baalbaki, Ghassan, van den Ende, Cornelia, Fligelstone, Kim, Frech, Tracy, Harel, Daphna, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Khalidi, Nader, Leite, Catarina, Nguyen, Christelle, Rannou, François, Pope, Janet, Reyna, Tatiana Sofia Rodriguez, Schouffoer, Anne A., Suarez‐Almazor, Maria E., Agard, Christian, Abdallah, Nassim Ait, Crichi, Benjamin, Farge‐Bancel, Dominique, André, Marc, Olagne, Louis, Smets, Perrine, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Masetto, Ariel, Roux, Sophie, Carreira, Patricia, Fare, Regina, Martin, Maria, Díaz, Sheila Melchor, Almazar, Esther Rodríguez, Casadevall, Marion, Chaigne, Benjamin, Dunogue, Bertrand, Régent, Alexis, Chung, Lorinda, Denton, Christopher, Domsic, Robyn, Dunne, James V., Wilcox, Pearce, Fortin, Paul R., Ikic, Alena, Gordon, Jessica, Lakin, Kimberly, Spiera, Robert, Granel‐Rey, Brigitte, Guffroy, Aurélien, Martin, Thierry, Poindron, Vincent, Gyger, Genevieve, Hachulla, Eric, Lambert, Marc, Launay, David, Maillard, Hélène, Sobanski, Vincent, Hoa, Sabrina, Jones, Niall, Kafaja, Suzanne, Lee, Yvonne C., Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Maurier, François, Mekinian, Arsene, Rivière, Sébastien, Nikpour, Mandana, Proudman, Susanna, Robinson, David, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, and Varga, John

Published
2023
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9. Intramuscular methylprednisolone in hand osteoarthritis: a retrospective cohort study.

Author

Hartog, Merel, Berkel, Jelle van, Bemt, Bart J F Van den, Ende, Cornelia H M van den, and Popa, Calin D

Subjects
HAND osteoarthritis, INTRAMUSCULAR injections, REGRESSION analysis, LOGISTIC regression analysis, ODDS ratio
Abstract

Objectives To explore patient characteristics associated with response to intramuscular methylprednisolone (MP) therapy in hand OA. Methods We performed an exploratory monocentric retrospective study. Patients with a clinical diagnosis of hand OA who visited our outpatient clinic between July 2016 and June 2021 and received at least once an intramuscular MP injection were included. Clinical data, including laboratory and radiologic results, were retrieved from electronic patient records (EPRs). Patients' reported response to MP and its duration in the first 6 months after injection was based on free text from the EPRs. Response was categorized into three groups: no response or worsening of symptoms, modest response and good response. Duration of response was categorized as short-term (<2 weeks) or long-term (≥2 weeks). Multivariable logistic regression models were performed to determine factors associated with good response to therapy with MP. Results Data from 262 hand OA patients (76% female) were analysed. A good response was experienced by 150 patients (57.2%). Among those with modest–good response, the perceived response of 162 patients (80.6%) lasted ≥2 weeks. Univariate regression analysis indicated that the level of CRP was associated with good response [odds ratio 1.08 (95% CI 1.00, 1.17)]. However, multivariate regression analysis showed no statistically significant associations. Conclusion In this retrospective study, more than half of hand OA patients displayed good response to intramuscular MP administration. The possible relation between the presence of low-grade inflammation and the response to this therapy warrants further investigation. [ABSTRACT FROM AUTHOR]

Published
2024
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11. Randomized controlled trial of an internet-based self-guided hand exercise program to improve hand function in people with systemic sclerosis: the Scleroderma Patient-centered Intervention Network Hand Exercise Program (SPIN-HAND) trial

Author

Kwakkenbos, Linda, Carrier, Marie-Eve, Welling, Joep, Levis, Brooke, Levis, Alexander W., Sauve, Maureen, Turner, Kimberly A., Tao, Lydia, Aguila, Kylene, Carboni-Jiménez, Andrea, Cañedo-Ayala, Mara, Harb, Sami, van den Ende, Cornelia, Hudson, Marie, van Breda, Ward, Nguyen, Christelle, Boutron, Isabelle, Rannou, François, Thombs, Brett D., and Mouthon, Luc

Published
2022
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12. One-year effectiveness of long-term exercise therapy in people with axial spondyloarthritis and severe functional limitations

Author

van Wissen, Maria A T, primary, van den Ende, Cornelia H M, additional, Gademan, Maaike G J, additional, Teuwen, Max M H, additional, Peter, Wilfred F, additional, Mahler, Elien A M, additional, van Schaardenburg, Dirkjan, additional, van Gaalen, Floris A, additional, Spoorenberg, Anneke, additional, van den Hout, Wilbert B, additional, van Tubergen, Astrid M, additional, Vliet Vlieland, Theodora P M, additional, and van Weely, Salima F E, additional

Published
2024
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14. Factors associated with fears due to COVID-19: A Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 cohort study

Author

Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Richard, Michelle, Sauvé, Maureen, Welling, Joep, Fligelstone, Kim, Gottesman, Karen, Leite, Catarina, Pérez, Elisabet, Baron, Murray, Malcarne, Vanessa, Mayes, Maureen D., Nielson, Warren R., Riggs, Robert, Assassi, Shervin, Ells, Carolyn, van den Ende, Cornelia, Frech, Tracy, Harel, Daphna, Hinchcliff, Monique, Hudson, Marie, Johnson, Sindhu R., Larche, Maggie, Nguyen, Christelle, Pope, Janet, Rannou, François, Reyna, Tatiana Sofia Rodriguez, Schouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Albert, Alexandra, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Carreira, Patricia, Chaigne, Benjamin, Chung, Lorinda, Correia, Chase, Denton, Christopher, Domsic, Robyn, Dunne, James V., Dunogue, Bertrand, Farge-Bancel, Dominique, Fortin, Paul R., Gordon, Jessica, Granel-Rey, Brigitte, Hatron, Pierre-Yves, Herrick, Ariane L., Hoa, Sabrina, Jones, Niall, Fernandes, Artur Jose de B., Kafaja, Suzanne, Khalidi, Nader, Launay, David, Manning, Joanne, Marie, Isabelle, Martin, Maria, Mekinian, Arsene, Melchor, Sheila, Nikpour, Mandana, Olagne, Louis, Proudman, Susanna, Régent, Alexis, Rivière, Sébastien, Robinson, David, Rodriguez, Esther, Roux, Sophie, Sobanski, Vincent, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Wilcox, Pearce, Ayala, Mara Cañedo, Carboni-Jiménez, Andrea, Gagarine, Maria, Nordlund, Julia, Østbø, Nora, Rice, Danielle B., Turner, Kimberly A., Culos-Reed, Nicole, Dyas, Laura, El-Baalbaki, Ghassan, Hebblethwaite, Shannon, Bustamante, Laura, Duchek, Delaney, Ellis, Kelsey, Wu, Yin, Kwakkenbos, Linda, Henry, Richard S., Carrier, Marie-Eve, Harb, Sami, Bourgeault, Angelica, Tao, Lydia, Negeri, Zelalem, Patten, Scott, Bartlett, Susan J., Mouthon, Luc, Varga, John, Benedetti, Andrea, and Thombs, Brett D.

Published
2021
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15. Perspective of Dutch Patients with Gout on Continuation or Discontinuation of Urate‐Lowering Therapy During Remission: A Mixed‐Methods Study.

Author

Peeters, Iris Rose, Veenstra, Frouwke, Wanten, Sophie A. C., Vriezekolk, Johanna E., van den Ende, Cornelia H., den Broeder, Alfons A., van Herwaarden, Noortje, Verhoef, Lise M., and Flendrie, Marcel

Subjects
SEMI-structured interviews, GOUT, THEMATIC analysis, PATIENTS' attitudes, SYMPTOMS
Abstract

Objective: Long‐term gout management is based on reducing serum urate by using urate‐lowering therapy (ULT). A lifelong treat‐to‐target approach is advocated, although a ULT (taper to) stop attempt can be considered (treat‐to‐avoid symptoms approach) during remission. Exploring the beliefs of patients with gout on long‐term ULT strategies during remission is important for optimizing gout management. We aimed to identify factors that influence the decision for continuation or discontinuation of ULT and to determine their relative importance according to patients with gout in remission. Methods: A mixed‐methods design was used. First, semistructured interviews (substudy 1) were conducted to identify barriers and facilitators for the (dis)continuation of ULT using inductive thematic analysis. Afterwards, these barriers/facilitators were summarized into neutrally phrased items and used in a maximum difference scaling study (substudy 2) to determine their relative importance using the rescaled probability score. Results: Substudies 1 and 2 included 18 and 156 patients, respectively. Substudy 1 yielded 22 items within 10 overarching themes. Substudy 2 revealed that the perceived risk of joint damage and gout flares and that ULT use gives some assurance were the most important items. The costs, ease of receiving ULT, and its practical use were the least important items. Conclusion: These results can aid shared decision‐making and provide input for what is important to discuss with patients with gout in remission when they consider ULT discontinuation. The emphasis should be on the risk of having gout flares and joint damage, not so much on facilitating how easily medication is received. [ABSTRACT FROM AUTHOR]

Published
2024
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17. A Sustained-Release Butyrate Tablet Suppresses Ex Vivo T Helper Cell Activation of Osteoarthritis Patients in a Double-Blind Placebo-Controlled Randomized Trial.

Author

Korsten, Sandra G. P. J., Hartog, Merel, Berends, Alinda J., Koenders, Marije I., Popa, Calin D., Vromans, Herman, Garssen, Johan, van de Ende, Cornelia H. M., Vermeiden, Jan P. W., and Willemsen, Linette E. M.

Abstract

Degenerative joint disease osteoarthritis (OA) is characterized by the degeneration of cartilage, synovial inflammation and low-grade systemic inflammation in association with microbial dysbiosis and intestinal barrier defects. Butyrate is known for its anti-inflammatory and barrier protective effects and might benefit OA patients. In a double-blind placebo-controlled randomized trial, the effects of four to five weeks of oral treatment with sustained-release (SR) butyrate tablets (600 mg/day) on systemic inflammation and immune function were studied in hand OA patients. Serum markers for systemic inflammation and lipopolysaccharide (LPS) leakage were measured and ex vivo stimulation of whole blood or peripheral blood mononuclear cells (PBMCs) was performed at baseline and after treatment. Butyrate treatment did not affect the serum markers nor the cytokine release of ex vivo LPS-stimulated whole blood or PBMCs nor the phenotype of restimulated monocytes. By contrast, butyrate treatment reduced the percentage of activated T helper (Th) cells and the Th17/Treg ratio in αCD3/CD28-activated PBMCs, though cytokine release upon stimulation remained unaffected. Nevertheless, the percentage of CD4+IL9+ cells was reduced by butyrate as compared to the placebo. In both groups, the frequency of Th1, Treg, Th17, activated Th17, CD4+IFNγ+ and CD4+TNFα+ cells was reduced. This study shows a proof of principle of some immunomodulatory effects using a SR butyrate treatment in hand OA patients. The inflammatory phenotype of Th cells was reduced, as indicated by a reduced percentage of Th9 cells, activated Th cells and improved Th17/Treg balance in ex vivo αCD3/CD28-activated PBMCs. Future studies are warranted to further optimize the butyrate dose regime to ameliorate inflammation in OA patients. [ABSTRACT FROM AUTHOR]

Published
2024
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18. Changes in mental health symptoms from pre-COVID-19 to COVID-19 among participants with systemic sclerosis from four countries: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort study

Author

Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Richard, Michelle, Sauvé, Maureen, Welling, Joep, Fligelstone, Kim, Gottesman, Karen, Leite, Catarina, Pérez, Elisabet, Baron, Murray, Malcarne, Vanessa, Mayes, Maureen D., Nielson, Warren R., Riggs, Robert, Assassi, Shervin, Ells, Carolyn, van den Ende, Cornelia, Frech, Tracy, Harel, Daphna, Hinchcliff, Monique, Hudson, Marie, Johnson, Sindhu R., Larche, Maggie, Nguyen, Christelle, Pope, Janet, Rannou, François, Reyna, Tatiana Sofia Rodriguez, Schouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Albert, Alexandra, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Carreira, Patricia, Chaigne, Benjamin, Chung, Lorinda, Correia, Chase, Denton, Christopher, Domsic, Robyn, Dunne, James V., Dunogue, Bertrand, Farge-Bancel, Dominique, Fortin, Paul R., Gordon, Jessica, Granel-Rey, Brigitte, Hatron, Pierre-Yves, Herrick, Ariane L., Hoa, Sabrina, Jones, Niall, Fernandes, Artur Jose de B., Kafaja, Suzanne, Khalidi, Nader, Launay, David, Manning, Joanne, Marie, Isabelle, Martin, Maria, Mekinian, Arsene, Melchor, Sheila, Nikpour, Mandana, Olagne, Louis, Proudman, Susanna, Régent, Alexis, Rivière, Sébastien, Robinson, David, Rodriguez, Esther, Roux, Sophie, Sobanski, Vincent, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Wilcox, Pearce, Ayala, Mara Cañedo, Carboni-Jiménez, Andrea, Gagarine, Maria, Nordlund, Julia, Østbø, Nora, Rice, Danielle B., Turner, Kimberly A., Culos-Reed, Nicole, Dyas, Laura, El-Baalbaki, Ghassan, Hebblethwaite, Shannon, Bustamante, Laura, Duchek, Delaney, Ellis, Kelsey, Thombs, Brett D., Kwakkenbos, Linda, Henry, Richard S., Carrier, Marie-Eve, Patten, Scott, Harb, Sami, Bourgeault, Angelica, Tao, Lydia, Bartlett, Susan J., Mouthon, Luc, Varga, John, and Benedetti, Andrea

Published
2020
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19. Protocol for a partially nested randomised controlled trial to evaluate the effectiveness of the scleroderma patient-centered intervention network COVID-19 home-isolation activities together (SPIN-CHAT) program to reduce anxiety among at-risk scleroderma patients

Author

Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Nielsen, Karen, Richard, Michelle, Sauvé, Maureen, Welling, Joep, Baron, Murray, Furst, Daniel E., Gottesman, Karen, Malcarne, Vanessa, Mayes, Maureen D., Mouthon, Luc, Nielson, Warren R., Riggs, Robert, Wigley, Fredrick, Assassi, Shervin, Boutron, Isabelle, Ells, Carolyn, van den Ende, Cornelia, Fligelstone, Kim, Frech, Tracy, Godard, Dominique, Harel, Daphna, Hinchcliff, Monique, Hudson, Marie, Johnson, Sindhu R., Larche, Maggie, Leite, Catarina, Nguyen, Christelle, Pope, Janet, Portales, Alexandra, Rannou, François, Reyna, Tatiana Sofia Rodriguez, Schouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Albert, Alexandra, André, Marc, Arsenault, Guylaine, Benzidia, Ilham, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Boire, Gilles, Bruns, Alessandra, Carreira, Patricia, Casadevall, Marion, Chaigne, Benjamin, Chung, Lorinda, Cohen, Pascal, Correia, Chase, Dagenais, Pierre, Denton, Christopher, Domsic, Robyn, Dubois, Sandrine, Dunne, James V., Dunogue, Bertrand, Fare, Regina, Farge-Bancel, Dominique, Fortin, Paul R., Gill, Anna, Gordon, Jessica, Granel-Rey, Brigitte, Gyger, Genevieve, Hachulla, Eric, Hatron, Pierre-Yves, Herrick, Ariane L., Hij, Adrian, Hoa, Sabrina, Ikic, Alena, Jones, Niall, de B. Fernandes, Artur Jose, Kafaja, Suzanne, Khalidi, Nader, Lambert, Marc, Launay, David, Liang, Patrick, Maillard, Hélène, Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Martin, Maria, Martin, Thierry, Masetto, Ariel, Maurier, François, Mekinian, Arsene, Melchor, Sheila, Nikpour, Mandana, Olagne, Louis, Poindron, Vincent, Proudman, Susanna, Régent, Alexis, Rivière, Sébastien, Robinson, David, Rodriguez, Esther, Roux, Sophie, Smets, Perrine, Smith, Doug, Sobanski, Vincent, Spiera, Robert, Steen, Virginia, Stevens, Wendy, Sutton, Evelyn, Terrier, Benjamin, Thorne, Carter, Varga, John, Wilcox, Pearce, Ayala, Mara Cañedo, Ostbo, Nora, Thombs, Brett D., Kwakkenbos, Linda, Carrier, Marie-Eve, Bourgeault, Angelica, Tao, Lydia, Harb, Sami, Gagarine, Maria, Rice, Danielle, Bustamante, Laura, Ellis, Kelsey, Duchek, Delaney, Wu, Yin, Bhandari, Parash Mani, Neupane, Dipika, Carboni-Jiménez, Andrea, Henry, Richard S., Krishnan, Ankur, Sun, Ying, Levis, Brooke, He, Chen, Turner, Kimberly A., Benedetti, Andrea, Culos-Reed, Nicole, El-Baalbaki, Ghassan, Hebblethwaite, Shannon, Bartlett, Susan J., Dyas, Laura, and Patten, Scott

Published
2020
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20. Efficacy of methylprednisolone in very early systemic sclerosis: results of the “Hit hard and early’’ randomized controlled trial

Author

Kersten, Brigit E, primary, Lemmers, Jacqueline M J, additional, Vanhaecke, Amber, additional, Velauthapillai, Arthiha, additional, van den Hombergh, Wieneke M T, additional, van den Hoogen, Frank H J, additional, van den Ende, Cornelia H M, additional, Smith, Vanessa, additional, and Vonk, Madelon C, additional

Published
2024
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23. Quality of reporting and nature of harms in clinical trials on supervised exercise in patients with rheumatoid arthritis or axial spondyloarthritis

Author

Teuwen, Max M H, Vliet Vlieland, Thea P.M., van Weely, Salima F.E., Schoones, Jan W., Rausch, Anne-Kathrin, Juhl, Carsten B., Niedermann Schneider, Karin, Gademan, Maaike G.J., van den Ende, Cornelia H.M., Teuwen, Max M H, Vliet Vlieland, Thea P.M., van Weely, Salima F.E., Schoones, Jan W., Rausch, Anne-Kathrin, Juhl, Carsten B., Niedermann Schneider, Karin, Gademan, Maaike G.J., and van den Ende, Cornelia H.M.

Abstract

To describe the quality of reporting and the nature of reported harms in clinical studies on the effectiveness of supervised exercises in patients with rheumatoid arthritis (RA) or axial spondyloarthritis (axSpA). We performed a systematic review, searching eight databases up to February 2023. Randomized controlled trials (RCTs) evaluating supervised exercises in adults with RA or axSpA were considered eligible. Data on harms were extracted according to the CONSORT Harms 2022 Checklist. Among others, it was recorded if harms were prespecified or non-prespecified. Moreover, the nature of reported harms was listed. Forty RCTs were included for RA and 25 for axSpA, of which 29 (73%) and 13 (52%) reported information on harms. In 13 (33%) RCTs in RA and four (16%) in axSpA, the collection of harms outcomes was described in the methods section. Prespecified outcomes were reported by eight (RA) and two (axSpA) RCTs. Non-specified harms outcomes were reported by six (RA) and four (axSpA) RCTs. Prespecified harms outcomes included measures of pain, disease activity, inflammation, and structural joint changes. The nature of non-prespecified harms outcomes varied largely, with pain being most common. A considerable proportion of trials on supervised exercise in RA or axSpA does not or inadequately report harms outcomes. Pain was the most commonly reported prespecified or non-specified harm. For a considerate interpretation of the balance between benefits and harms of supervised exercise in RA or axSpA, use of the CONSORT Harms 2022 Checklist for the design, conduct and reporting of trials is advocated.

Published
2024

24. EULAR recommendations for the non-pharmacological management of systemic lupus erythematosus and systemic sclerosis

Author

Parodis, Ioannis, Girard-Guyonvarc'h, Charlotte, Arnaud, Laurent, Distler, Oliver, Domján, Andrea, Van den Ende, Cornelia H. M., Fligelstone, Kim, Kocher, Agnes, Larosa, Maddalena, Lau, Martin, Mitropoulos, Alexandros, Ndosi, Mwidimi, Poole, Janet L., Redmond, Anthony, Ritschl, Valentin, Alexanderson, Helene, Sjöberg, Yvonne, von Perner, Gunilla, Uhlig, Till, Varju, Cecilia, Vriezekolk, Johanna E., Welin, Elisabet, Westhovens, René, Stamm, Tanja A., Boström, Carina, Parodis, Ioannis, Girard-Guyonvarc'h, Charlotte, Arnaud, Laurent, Distler, Oliver, Domján, Andrea, Van den Ende, Cornelia H. M., Fligelstone, Kim, Kocher, Agnes, Larosa, Maddalena, Lau, Martin, Mitropoulos, Alexandros, Ndosi, Mwidimi, Poole, Janet L., Redmond, Anthony, Ritschl, Valentin, Alexanderson, Helene, Sjöberg, Yvonne, von Perner, Gunilla, Uhlig, Till, Varju, Cecilia, Vriezekolk, Johanna E., Welin, Elisabet, Westhovens, René, Stamm, Tanja A., and Boström, Carina

Abstract

OBJECTIVE: To develop evidence-based recommendations for the non-pharmacological management of systemic lupus erythematosus (SLE) and systemic sclerosis (SSc). METHODS: A task force comprising 7 rheumatologists, 15 other healthcare professionals and 3 patients was established. Following a systematic literature review performed to inform the recommendations, statements were formulated, discussed during online meetings and graded based on risk of bias assessment, level of evidence (LoE) and strength of recommendation (SoR; scale A-D, A comprising consistent LoE 1 studies, D comprising LoE 4 or inconsistent studies), following the European Alliance of Associations for Rheumatology standard operating procedure. Level of agreement (LoA; scale 0-10, 0 denoting complete disagreement, 10 denoting complete agreement) was determined for each statement through online voting. RESULTS: Four overarching principles and 12 recommendations were developed. These concerned common and disease-specific aspects of non-pharmacological management. SoR ranged from A to D. The mean LoA with the overarching principles and recommendations ranged from 8.4 to 9.7. Briefly, non-pharmacological management of SLE and SSc should be tailored, person-centred and participatory. It is not intended to preclude but rather complement pharmacotherapy. Patients should be offered education and support for physical exercise, smoking cessation and avoidance of cold exposure. Photoprotection and psychosocial interventions are important for SLE patients, while mouth and hand exercises are important in SSc. CONCLUSIONS: The recommendations will guide healthcare professionals and patients towards a holistic and personalised management of SLE and SSc. Research and educational agendas were developed to address needs towards a higher evidence level, enhancement of clinician-patient communication and improved outcomes.

Published
2024
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30. Effectiveness of longstanding exercise therapy compared with usual care for people with rheumatoid arthritis and severe functional limitations: a randomised controlled trial

Author

Teuwen, Max M H, primary, van Weely, Salima F E, additional, Vliet Vlieland, Thea P M, additional, van Wissen, Maria A T, additional, Peter, Wilfred F, additional, den Broeder, Alfons A, additional, van Schaardenburg, Dirkjan, additional, van den Hout, Wilbert B, additional, Van den Ende, Cornelia H M, additional, and Gademan, Maaike G J, additional

Published
2024
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33. The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: protocol for a cohort multiple randomised controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation interventions in a rare disease context.

Author

Kwakkenbos, Linda, Jewett, Lisa R, Baron, Murray, Bartlett, Susan J, Furst, Dan, Gottesman, Karen, Khanna, Dinesh, Malcarne, Vanessa L, Mayes, Maureen D, Mouthon, Luc, Poiraudeau, Serge, Sauve, Maureen, Nielson, Warren R, Poole, Janet L, Assassi, Shervin, Boutron, Isabelle, Ells, Carolyn, van den Ende, Cornelia Hm, Hudson, Marie, Impens, Ann, Körner, Annett, Leite, Catarina, Costa Maia, Angela, Mendelson, Cindy, Pope, Janet, Steele, Russell J, Suarez-Almazor, Maria E, Ahmed, Sara, Coronado-Montoya, Stephanie, Delisle, Vanessa C, Gholizadeh, Shadi, Jang, Yeona, Levis, Brooke, Milette, Katherine, Mills, Sarah D, Razykov, Ilya, Fox, Rina S, and Thombs, Brett D

Subjects
Mental Health, Rehabilitation Medicine, Rheumatology, Statistics & Research Methods, Clinical Sciences, Public Health and Health Services, Other Medical and Health Sciences
Abstract

IntroductionPsychosocial and rehabilitation interventions are increasingly used to attenuate disability and improve health-related quality of life (HRQL) in chronic diseases, but are typically not available for patients with rare diseases. Conducting rigorous, adequately powered trials of these interventions for patients with rare diseases is difficult. The Scleroderma Patient-centered Intervention Network (SPIN) is an international collaboration of patient organisations, clinicians and researchers. The aim of SPIN is to develop a research infrastructure to test accessible, low-cost self-guided online interventions to reduce disability and improve HRQL for people living with the rare disease systemic sclerosis (SSc or scleroderma). Once tested, effective interventions will be made accessible through patient organisations partnering with SPIN.Methods and analysisSPIN will employ the cohort multiple randomised controlled trial (cmRCT) design, in which patients consent to participate in a cohort for ongoing data collection. The aim is to recruit 1500-2000 patients from centres across the world within a period of 5 years (2013-2018). Eligible participants are persons ≥18 years of age with a diagnosis of SSc. In addition to baseline medical data, participants will complete patient-reported outcome measures every 3 months. Upon enrolment in the cohort, patients will consent to be contacted in the future to participate in intervention research and to allow their data to be used for comparison purposes for interventions tested with other cohort participants. Once interventions are developed, patients from the cohort will be randomly selected and offered interventions as part of pragmatic RCTs. Outcomes from patients offered interventions will be compared with outcomes from trial-eligible patients who are not offered the interventions.Ethics and disseminationThe use of the cmRCT design, the development of self-guided online interventions and partnerships with patient organisations will allow SPIN to develop, rigourously test and effectively disseminate psychosocial and rehabilitation interventions for people with SSc.

Published
2013

34. Quality of reporting and nature of harms in clinical trials on supervised exercise in patients with rheumatoid arthritis or axial spondyloarthritis

Author

Teuwen, Max M. H., primary, Vlieland, Thea P. M. Vliet, additional, van Weely, Salima F. E., additional, Schoones, Jan W., additional, Rausch Osthoff, Anne-Kathrin, additional, Juhl, Carsten B., additional, Niedermann, Karin, additional, Gademan, Maaike G. J., additional, and van den Ende, Cornelia H. M., additional

Published
2023
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35. Functional limitations of people with rheumatoid arthritis or axial spondyloarthritis and severe functional disability: a cross-sectional descriptive study

Author

Teuwen, Max M. H., primary, van Weely, Salima F. E., additional, Vliet Vlieland, Thea P. M., additional, Douw, Thom, additional, van Schaardenburg, Dirkjan, additional, den Broeder, Alfons A., additional, van Tubergen, Astrid M., additional, van Wissen, Maria A. T., additional, van den Ende, Cornelia H. M., additional, and Gademan, Maaike G. J., additional

Published
2023
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36. Validation of the Body Concealment Scale for Scleroderma (BCSS): Replication in the Scleroderma Patient-centered Intervention Network (SPIN) Cohort

Author

Baron, Murray, Bartlett, Susan J., Furst, Dan, Gottesman, Karen, van den Hoogen, Frank, Mouthon, Luc, Nielson, Warren R., Poiraudeau, Serge, Riggs, Robert, Sauve, Maureen, Wigley, Fredrick, Boutron, Isabelle, Costa Maia, Angela, El-Baalbaki, Ghassan, Ells, Carolyn, van den Ende, Cornelia, Fligelstone, Kim, Fortune, Catherine, Frech, Tracy, Godard, Dominique, Harel, Daphna, Hudson, Marie, Impens, Ann, Jang, Yeona, Johnson, Sindhu R., Kennedy, Ann Tyrell, Khanna, Dinesh, Larche, Maggie, Leite, Catarina, Marra, Carlo, Nielsen, Karen, Poole, Janet L., Pope, Janet, Rodriguez Reyna, Tatiana Sofia, Schouffoer, Anne A., Steele, Russell J., Suarez-Almazor, Maria E., Welling, Joep, Wong-Rieger, Durhane, Albert, Alexandra, Arsenault, Guylaine, Bissonnette, Lyne, Boire, Gilles, Bruns, Alessandra, Carreira, Patricia, Chung, Lorinda, Dagenais, Pierre, Denton, Christopher, Domsic, Robyn, Dunne, James V., Fortin, Paul, Gill, Anna, Gordon, Jessica, Gyger, Genevieve, Herrick, Ariane L., Hinchcliff, Monique, Ikic, Alena, Jones, Niall, de B. Fernandes, Artur Jose, Kafaja, Suzanne, Khalidi, Nader, Korman, Benjamin, Liang, Patrick, Manning, Joanne, Masetto, Ariel, Robinson, David, Roux, Sophie, Schiopu, Elena, Smith, Doug, Spiera, Robert, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Varga, John, Wilcox, Pearce, Delisle, Vanessa C., Fedoruk, Claire, Levis, Brooke, Pepin, Mia R., Persmann, Jennifer, Jewett, Lisa R., Kwakkenbos, Linda, Carrier, Marie-Eve, Malcarne, Vanessa L., Harcourt, Diana, Rumsey, Nichola, Mayes, Maureen D., Assassi, Shervin, Körner, Annett, Fox, Rina S., Gholizadeh, Shadi, Mills, Sarah D., Portales, Alexandra, and Thombs, Brett D.

Published
2017
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39. Experiences of systemic sclerosis patients with home monitoring of their pulmonary function: a qualitative study.

Author

Velauthapillai, Arthiha, Schepers, Gwyn M M, Vonk, Madelon C, and Ende, Cornelia H M van den

Subjects
SYSTEMIC scleroderma, INTERSTITIAL lung diseases, INDIVIDUALIZED medicine
Abstract

Objective To evaluate the experiences, perceived benefits and disadvantages of home monitoring of pulmonary function in SSc patients with interstitial lung disease (ILD). Methods Semistructured interviews were conducted among SSc-ILD patients who used the home monitoring application of pulmonary function for at least 3 months. In our program, patients are instructed to perform home spirometry weekly at fixed time points using a mobile application with results being directly visible for patients and physicians. Audiotapes of the interviews were transcribed verbatim and analysed using inductive thematic analysis after performing a member check. Results A total of 13 patients were interviewed, with a median age of 58 years (range 36–75) and a median experience with home monitoring of 12 months (range 3–12). We identified four major themes, including routine of telemonitoring, impact of telemonitoring, trust in telemonitoring and implementation in regular healthcare. Overall, patients found performing home spirometry to be feasible. Major perceived benefits of performing home spirometry are an increase in patient empowerment, better understanding of the disease course and a reduction in hospital visits, whereas identified disadvantages are an emotional burden of telemonitoring, heightened awareness of illness, doubts about its validity and the need for digital competencies. All patients expressed their willingness to continue, although some patients emphasized the need for face-to-face visits. Conclusion Telemonitoring of pulmonary function is accepted by SSc-ILD patients with the perceived benefits outweighing the disadvantages. Adopting a patient-centred strategy that considers individual factors and addresses concerns proactively is warranted to successfully implement home spirometry. [ABSTRACT FROM AUTHOR]

Published
2024
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40. Delivery of a quality improvement program in team-based rehabilitation for patients with rheumatic and musculoskeletal diseases: a mixed methods study.

Author

Sand-Svartrud, Anne-Lene, Berdal, Gunnhild, Aanerud, Gerd Jenny, Azimi, Maryam, Bjørnerud, Anne Merete, Nygaard Dager, Turid, Van den Ende, Cornelia H.M., Johansen, Inger, Lindtvedt Valaas, Helene, Dagfinrud, Hanne, and Kjeken, Ingvild

Subjects
CLINICAL medicine, HUMAN services programs, MEDICAL quality control, INTERPROFESSIONAL relations, SELF-management (Psychology), RESEARCH funding, MUSCULOSKELETAL system diseases, MEDICAL care, KEY performance indicators (Management), QUESTIONNAIRES, SEX distribution, EVALUATION of human services programs, HUMAN research subjects, GOAL (Psychology), DESCRIPTIVE statistics, REHABILITATION centers, ATTITUDES of medical personnel, RESEARCH methodology, INFORMED consent (Medical law), QUALITY assurance, DATA analysis software, RHEUMATISM, PROFESSIONAL competence
Abstract

To investigate how a quality improvement program (BRIDGE), designed to promote coordination and continuity in rehabilitation services, was delivered and perceived by providers in routine practice for patients with rheumatic and musculoskeletal diseases. A convergent mixed methods approach was nested within a stepped-wedge, randomized controlled trial. The intervention program was developed to bridge gaps between secondary and primary healthcare, comprising the following elements: motivational interviewing; patient-specific goal setting; written rehabilitation-plans; personalized feedback on progress; and tailored follow-up. Data from health professionals who delivered the program were collected and analyzed separately, using two questionnaires and three focus groups. Results were integrated during the overall interpretation and discussion. The program delivery depended on the providers' skills and competence, as well as on contextual factors in their teams and institutions. Suggested possibilities for improvements included follow-up with sufficient support from next of kin and external services, and the practicing of action and coping plans, standardized outcome measures, and feedback on progress. Leaders and clinicians should discuss efforts to ensure confident and qualified rehabilitation delivery at the levels of individual providers, teams, and institutions, and pay equal attention to each component in the process from admission to follow-up. Quality in rehabilitation should be characterized by a continuous and coordinated process from goal setting to follow-up. To improve the quality, sufficient involvement of next of kin and external services is needed. Clinicians may need training to build confidence in motivational interviewing, action- and coping planning, feedback on progress, and follow-up. Leaders should organize education sessions, optimize schedules, insert standardized outcome measures, and facilitate collaboration across levels of care and services. [ABSTRACT FROM AUTHOR]

Published
2024
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43. EULAR recommendations for the non-pharmacological management of systemic lupus erythematosus and systemic sclerosis

Author

Parodis, Ioannis, primary, Girard-Guyonvarc’h, Charlotte, additional, Arnaud, Laurent, additional, Distler, Oliver, additional, Domján, Andrea, additional, Van den Ende, Cornelia H M, additional, Fligelstone, Kim, additional, Kocher, Agnes, additional, Larosa, Maddalena, additional, Lau, Martin, additional, Mitropoulos, Alexandros, additional, Ndosi, Mwidimi, additional, Poole, Janet L, additional, Redmond, Anthony, additional, Ritschl, Valentin, additional, Alexanderson, Helene, additional, Sjöberg, Yvonne, additional, von Perner, Gunilla, additional, Uhlig, Till, additional, Varju, Cecilia, additional, Vriezekolk, Johanna E, additional, Welin, Elisabet, additional, Westhovens, René, additional, Stamm, Tanja A, additional, and Boström, Carina, additional

Published
2023
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45. Physical therapy in systemic sclerosis: the patient perspective

Author

MS Reumatologie/Immunologie/Infectie, Infection & Immunity, Liem, Sophie I E, van Leeuwen, Nina M, Vliet Vlieland, Thea P M, Boerrigter, Gerrie M W, van den Ende, Cornelia H M, de Pundert, Lian A J, Schriemer, Marisca R, Spierings, Julia, Vonk, Madelon C, de Vries-Bouwstra, Jeska K, MS Reumatologie/Immunologie/Infectie, Infection & Immunity, Liem, Sophie I E, van Leeuwen, Nina M, Vliet Vlieland, Thea P M, Boerrigter, Gerrie M W, van den Ende, Cornelia H M, de Pundert, Lian A J, Schriemer, Marisca R, Spierings, Julia, Vonk, Madelon C, and de Vries-Bouwstra, Jeska K

Published
2023

46. Exploration of adverse consequences of total knee arthroplasty by patients and knee specialists: a qualitative study.

Author

Molder, Malou E M te, Vriezekolk, Johanna E, Onsem, Stefaan van, Smolders, José M H, Heesterbeek, Petra J C, and Ende, Cornelia H M van den

Subjects
TOTAL knee replacement, QUALITATIVE research, HEALTH outcome assessment
Abstract

Objectives A successful outcome according to the knee specialist is not a guarantee for treatment success as perceived by patients. In this study, we aimed to explore outcome expectations and experiences of patients with OA before and after total knee arthroplasty (TKA) surgery and knee specialists that might contribute to the negative appraisal of its effect, and differences in views between patients and knee specialists. Methods Semi-structured interviews were held in Belgium and the Netherlands. Twenty-five patients (2 without indications for TKA, 11 on the waiting list for TKA and 12 postoperative TKA) and 15 knee specialists (9 orthopaedic surgeons, 1 physician assistant, 1 nurse practitioner and 4 physiotherapists) were interviewed. Conversations were audio recorded, transcribed verbatim, and analysed using thematic analysis following the grounded theory approach. Separate analyses were conducted for patients and knee specialists. Results Patients were focused on the arduous process of getting used to the prosthesis, lingering pain, awareness of the artificial knee and limitations they experience during valued and daily activities, whereas knee specialists put emphasis on surgical failure, unexplained pain, limited walking ability and impairments that limit the physical functioning of patients. Conclusion This study provides a comprehensive overview of potential adverse consequences from the perspective of both patients and knee specialists. Improving patients' awareness and expectations of adaptation to the knee prosthesis needs to be considered. [ABSTRACT FROM AUTHOR]

Published
2024
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47. Association of Low-Dose Colchicine With Incidence of Knee and Hip Replacements

Author

Heijman, Michelle W.J., primary, Fiolet, Aernoud T.L., additional, Mosterd, Arend, additional, Tijssen, Jan G.P., additional, van den Bemt, Bart J.F., additional, Schut, Astrid, additional, Eikelboom, John W., additional, Thompson, Peter L., additional, van den Ende, Cornelia H.M., additional, Nidorf, Stefan M., additional, Popa, Calin D., additional, and Cornel, Jan H., additional

Published
2023
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48. Nailfold capillaroscopy and candidate-biomarker levels in systemic sclerosis-associated pulmonary hypertension: A cross-sectional study

Author

Lemmers, Jacqueline MJ, primary, van Caam, Arjan PM, additional, Kersten, Brigit, additional, van den Ende, Cornelia HM, additional, Knaapen, Hanneke, additional, van Dijk, Arie PJ, additional, Hagmolen of ten Have, Wanda, additional, van den Hoogen, Frank HJ, additional, Koenen, Hans, additional, van Leuven, Sander I, additional, Alkema, Wynand, additional, Smeets, Ruben L, additional, and Vonk, Madelon C, additional

Published
2023
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49. Delivery of a quality improvement program in team-based rehabilitation for patients with rheumatic and musculoskeletal diseases: a mixed methods study

Author

Sand-Svartrud, Anne-Lene, primary, Berdal, Gunnhild, additional, Aanerud, Gerd Jenny, additional, Azimi, Maryam, additional, Bjørnerud, Anne Merete, additional, Nygaard Dager, Turid, additional, Van den Ende, Cornelia H.M., additional, Johansen, Inger, additional, Lindtvedt Valaas, Helene, additional, Dagfinrud, Hanne, additional, and Kjeken, Ingvild, additional

Published
2023
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