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3. Impact of Risk Factors on COVID-19 Outcomes in Unvaccinated People With Rheumatic Diseases: A Comparative Analysis of Pandemic Epochs Using the COVID-19 Global Rheumatology Alliance Registry

Author

Yazdany, J, Ware, A, Wallace, Z, Bhana, S, Grainger, R, Hachulla, E, Richez, C, Cacoub, P, Hausmann, J, Liew, J, Sirotich, E, Jacobsohn, L, Strangfeld, A, Mateus, E, Hyrich, K, Gossec, L, Carmona, L, Lawson-Tovey, S, Kearsley-Fleet, L, Schaefer, M, Ribeiro, S, Al-Emadi, S, Hasseli, R, Müller-Ladner, U, Specker, C, Schulze-Koops, H, Bernardes, M, Fraga, V, Rodrigues, A, Sparks, J, Ljung, L, Di Giuseppe, D, Tidblad, L, Wise, L, Duarte-García, A, Ugarte-Gil, M, Colunga-Pedraza, I, Martínez-Martínez, M, Alpizar-Rodriguez, D, Xavier, R, Isnardi, C, Pera, M, Pons-Estel, G, Izadi, Z, Gianfrancesco, M, Carrara, G, Scirè, C, Zanetti, A, Machado, P, Wallace, ZS, Hausmann, JS, Liew, JW, Mateus, EF, Hyrich, KL, Ribeiro, SLE, Fraga, VM, Rodrigues, AM, Sparks, JA, Ugarte-Gil, MF, Colunga-Pedraza, IJ, Martínez-Martínez, MU, Xavier, RM, Isnardi, CA, Gianfrancesco, MA, Scirè, CA, Machado, PM, Yazdany, J, Ware, A, Wallace, Z, Bhana, S, Grainger, R, Hachulla, E, Richez, C, Cacoub, P, Hausmann, J, Liew, J, Sirotich, E, Jacobsohn, L, Strangfeld, A, Mateus, E, Hyrich, K, Gossec, L, Carmona, L, Lawson-Tovey, S, Kearsley-Fleet, L, Schaefer, M, Ribeiro, S, Al-Emadi, S, Hasseli, R, Müller-Ladner, U, Specker, C, Schulze-Koops, H, Bernardes, M, Fraga, V, Rodrigues, A, Sparks, J, Ljung, L, Di Giuseppe, D, Tidblad, L, Wise, L, Duarte-García, A, Ugarte-Gil, M, Colunga-Pedraza, I, Martínez-Martínez, M, Alpizar-Rodriguez, D, Xavier, R, Isnardi, C, Pera, M, Pons-Estel, G, Izadi, Z, Gianfrancesco, M, Carrara, G, Scirè, C, Zanetti, A, Machado, P, Wallace, ZS, Hausmann, JS, Liew, JW, Mateus, EF, Hyrich, KL, Ribeiro, SLE, Fraga, VM, Rodrigues, AM, Sparks, JA, Ugarte-Gil, MF, Colunga-Pedraza, IJ, Martínez-Martínez, MU, Xavier, RM, Isnardi, CA, Gianfrancesco, MA, Scirè, CA, and Machado, PM

Abstract

Objective: Approximately one third of individuals worldwide have not received a COVID-19 vaccine. Although studies have investigated risk factors linked to severe COVID-19 among unvaccinated people with rheumatic diseases (RDs), we know less about whether these factors changed as the pandemic progressed. We aimed to identify risk factors associated with severe COVID-19 in unvaccinated individuals in different pandemic epochs corresponding to major variants of concern. Methods: Patients with RDs and COVID-19 were entered into the COVID-19 Global Rheumatology Alliance Registry between March 2020 and June 2022. An ordinal logistic regression model (not hospitalized, hospitalized, and death) was used with date of COVID-19 diagnosis, age, sex, race and/or ethnicity, comorbidities, RD activity, medications, and the human development index (HDI) as covariates. The main analysis included all unvaccinated patients across COVID-19 pandemic epochs; subanalyses stratified patients according to RD types. Results: Among 19,256 unvaccinated people with RDs and COVID-19, those who were older, male, had more comorbidities, used glucocorticoids, had higher disease activity, or lived in lower HDI regions had worse outcomes across epochs. For those with rheumatoid arthritis, sulfasalazine and B-cell–depleting therapy were associated with worse outcomes, and tumor necrosis factor inhibitors were associated with improved outcomes. In those with connective tissue disease or vasculitis, B-cell–depleting therapy was associated with worse outcomes. Conclusion: Risk factors for severe COVID-19 outcomes were similar throughout pandemic epochs in unvaccinated people with RDs. Ongoing efforts, including vaccination, are needed to reduce COVID-19 severity in this population, particularly in those with medical and social vulnerabilities identified in this study.

Published
2024

5. 'I think we just do it once and leave it...' The collection and utility of family health history in general practice in Aotearoa New Zealand: a qualitative study.

Author

Jefferies, R., Wilcox, P., Paringatai, K., Stubbe, M., Grainger, R., Dowell, A., and Filoche, S. K.

Subjects
CHRONIC disease risk factors, CHRONIC disease diagnosis, FAMILY health, RISK assessment, PATIENTS' families, FAMILY medicine, OCCUPATIONAL roles, QUALITATIVE research, MEDICAL personnel, INTERVIEWING, HEALTH, PRIMARY health care, FAMILY history (Medicine), PHYSICIANS' attitudes, CULTURAL values, INFORMATION resources, THEMATIC analysis, CHRONIC diseases, RESEARCH methodology, PHYSICIAN-patient relations, INDIVIDUALIZED medicine, PHYSICIANS, PATIENT participation, SELF-disclosure, ACCESS to information
Abstract

Introduction. The value of family health history as a means to understanding health risk has been long known. Its value in a precision medicine context is also now becoming apparent. General practitioners (GPs) are considered to play a key role in the collection, and investigation, of family health history, but it remains widely reported as being both poorly and infrequently undertaken. Little is known about this practice in Aotearoa New Zealand (NZ). Aim. This study aimed to explore current practices in relation to the ascertainment of family health history, with a view towards precision medicine. Methods. Semi-structured interviews were conducted with 10 GPs recruited from one urban area of NZ. The interviews were subjected to a thematic analysis. Results. Family health history information was used to varying degrees in four areas - risk ascertainment, patient engagement with a diagnosis, social context and building relationships. Patient cultural considerations were rarely mentioned. Reliability of information provided by patients, resource constraints, context driven consults and electronic health record limitations are potential indicators of current limits of family health history. Discussion. Our findings present a baseline of current practice and echo larger studies from overseas. As precision medicine is not yet routine, a unique opportunity exists for consideration to be given to establishing specific roles within the NZ health system to enable equitable practice of, and subsequent health gains from, the use of family/whānau health history information as part of precision medicine. [ABSTRACT FROM AUTHOR]

Published
2024
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7. Current practices of health care providers in recommending online resources for chronic pain self-management

Author

Devan H, Godfrey HK, Perry MA, Hempel D, Saipe B, Hale L, and Grainger R

Subjects
chronic pain, clinical practice, eHealth, mHealth, mixed methods, survey, Medicine (General), R5-920
Abstract

Hemakumar Devan,1 Hazel K Godfrey,1,2 Meredith A Perry,1 Dagmar Hempel,3 Barbara Saipe,3 Leigh Hale,4 Rebecca Grainger51Centre for Health, Activity, and Rehabilitation Research (CHARR), School of Physiotherapy, University of Otago, Wellington, New Zealand; 2School of Psychology, Victoria University of Wellington, Wellington, New Zealand; 3Pain Management Service, Capital and Coast District Health Board (CCDHB), Wellington, New Zealand; 4Centre for Health, Activity and Rehabilitation Research (CHARR), School of Physiotherapy, University of Otago, Dunedin, New Zealand; 5Department of Medicine, University of Otago, Wellington, New ZealandPurpose: Online health resources (websites, apps and social media) may be an adjunct to provide self-management support for people with persistent or chronic pain. Endorsement of online health resources by health care providers is crucial for uptake by end-users. The aim of this study was to investigate the current practices of New Zealand (NZ) health care providers in recommending online resources for persistent pain management, and to identify what factors predict health care providers’ recommendations and to explore the common concerns.Methods: An online survey of NZ health care providers (ie, chiropractors, general practitioners, nurses, occupational therapists, osteopaths, physiotherapists, psychologists, specialist consultants, and social workers) involved in the management of persistent pain was conducted. The recruitment strategy was tailored to each occupation via occupation-specific professional organizations, and by approaching multidisciplinary professional organizations.Results: Data from 213 health care providers were used in the final analysis. Most of the health care providers were physiotherapists (n=71), followed by chiropractors (n=39) and general practitioners (n=31). Fifty three percent (111/210) of health care providers reported currently recommending online resources. A multivariate logistic regression model showed that specialist interest in treating pain (OR=3.84; 95% CI: 1.66, 8.87; P=0.002), and level of confidence in recommending online resources (OR=1.05; CI: 1.04, 1.07; P

Published
2019

8. Student perspectives on health informatics in a medical curriculum: A case study.

Author

Townsley, H., Sumner, B., O'Neill, A., Kenwright, D., Wilkinson, T., and Grainger, R.

Subjects
STUDENT attitudes, MEDICAL informatics, INTERDISCIPLINARY education, MEDICAL students, PEER teaching, MEDICAL school curriculum, DIGITAL natives
Abstract

Introduction: Health informatics (HI) is the study and practice of technology used to improve the quality and efficiency of healthcare. Formal HI teaching lacks visibility in most Australasian medical schools. In this study, medical students collected data from their peers and recent graduates on the teaching and learning of HI to inform development of a needs-based integrated HI curriculum. Methods: This mixed-methods case study of our medical degree program used clinically relevant vignettes to explore student confidence and opinions on HI. Current HI learning was benchmarked against recommendations. Recent graduates from University of Otago Medical School participated in an online survey (n = 26), and five focus group interviews of final-year medical students (n = 17) were carried out by a peer student. Results: More than half of the participants surveyed felt confident in most HI topics, though many were less confident in telemedicine, evaluating electronic resources for patient use, data communication and data storage. Most students recalled learning some HI principles and agreed these should be integrated within their degree. Students highlighted that HI curriculum development should consider students' self-identity as digital natives and the need for clinically situated, relevant and authentic learning to avoid tensions between theoretical HI concepts and clinical environments. Conclusion: Medical students are critical consumers of potential HI curriculum content and expressed clear preferences for clinically relevant and up-to-date HI content. Key challenges in developing an HI curriculum will be ensuring a student-centered, authentic, contemporary and future-focused curriculum, with relevance demonstrated to digital native students. [ABSTRACT FROM AUTHOR]

Published
2024
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9. Risk of severe COVID-19 associated with immune-modifying drugs: Data from PsoProtect and Global Rheumatology Alliance registries.

Author

Mahil, S, Schaefer, M, Dand, N, Yiu, Z, Hyrich, K, Strangfeld, A, Yates, M, Carmona, L, Gossec, L, Mateus, E, Lawson-Tovey, S, Wiek, D, Jacobsohn, L, Isnardi, C, Quintana, R, Soriano, E, Wallace, Z, Bhana, S, Gore-Massey, M, Grainger, R, Hausmann, J, Liew, J, Sirotich, E, Mason, K, Tsakok, T, Meynell, F, Coker, B, Vincent, A, Urmston, D, Mcateer, H, Vesty, A, Kelly, J, Lancelot, C, Moorhead, L, Mackenzie, T, Rossi, M, Rivera, R, Mahe, E, Carugno, A, Magnano, M, Rech, G, Balogh, E, Feldman, S, De La Cruz, C, Di Meglio, P, Contreras, C, Choon, S, Capon, F, Torres, T, Naldi, L, Weinman, J, Brown, M, Galloway, J, Norton, S, Lambert, J, Spuls, P, Van Huizen, A, Jullien, D, Bachelez, H, Mcmahon, D, Freeman, E, Gisondi, P, Puig, L, Warren, R, Langan, S, Sufka, P, Robinson, P, Yazdany, J, Griffiths, C, Barker, J, Machado, P, Smith, C, Mahil SK, Schaefer M, Dand N, Yiu ZZN, Hyrich KL, Strangfeld A, Yates M, Carmona L, Gossec L, Mateus EF, Lawson-Tovey S, Wiek D, Jacobsohn L, Isnardi CA, Quintana R, Soriano ER, Wallace ZS, Bhana S, Gore-Massey M, Grainger R, Hausmann JS, Liew JW, Sirotich E, Mason KJ, Tsakok T, Meynell F, Coker B, Vincent A, Urmston D, McAteer H, Vesty A, Kelly J, Lancelot C, Moorhead L, Mackenzie T, Rossi MT, Rivera R, Mahe E, Carugno A, Magnano M, Rech G, Balogh EA, Feldman SR, De La Cruz C, Di Meglio P, Contreras CR, Choon SE, Capon F, Torres T, Naldi L, Weinman J, Brown MA, Galloway JB, Norton S, Lambert J, Spuls P, Van Huizen AM, Jullien D, Bachelez H, McMahon DE, Freeman EE, Gisondi P, Puig L, Warren RB, Langan SM, Sufka P, Robinson PC, Yazdany J, Griffiths CEM, Barker JN, Machado PM, Smith CH., Mahil, S, Schaefer, M, Dand, N, Yiu, Z, Hyrich, K, Strangfeld, A, Yates, M, Carmona, L, Gossec, L, Mateus, E, Lawson-Tovey, S, Wiek, D, Jacobsohn, L, Isnardi, C, Quintana, R, Soriano, E, Wallace, Z, Bhana, S, Gore-Massey, M, Grainger, R, Hausmann, J, Liew, J, Sirotich, E, Mason, K, Tsakok, T, Meynell, F, Coker, B, Vincent, A, Urmston, D, Mcateer, H, Vesty, A, Kelly, J, Lancelot, C, Moorhead, L, Mackenzie, T, Rossi, M, Rivera, R, Mahe, E, Carugno, A, Magnano, M, Rech, G, Balogh, E, Feldman, S, De La Cruz, C, Di Meglio, P, Contreras, C, Choon, S, Capon, F, Torres, T, Naldi, L, Weinman, J, Brown, M, Galloway, J, Norton, S, Lambert, J, Spuls, P, Van Huizen, A, Jullien, D, Bachelez, H, Mcmahon, D, Freeman, E, Gisondi, P, Puig, L, Warren, R, Langan, S, Sufka, P, Robinson, P, Yazdany, J, Griffiths, C, Barker, J, Machado, P, Smith, C, Mahil SK, Schaefer M, Dand N, Yiu ZZN, Hyrich KL, Strangfeld A, Yates M, Carmona L, Gossec L, Mateus EF, Lawson-Tovey S, Wiek D, Jacobsohn L, Isnardi CA, Quintana R, Soriano ER, Wallace ZS, Bhana S, Gore-Massey M, Grainger R, Hausmann JS, Liew JW, Sirotich E, Mason KJ, Tsakok T, Meynell F, Coker B, Vincent A, Urmston D, McAteer H, Vesty A, Kelly J, Lancelot C, Moorhead L, Mackenzie T, Rossi MT, Rivera R, Mahe E, Carugno A, Magnano M, Rech G, Balogh EA, Feldman SR, De La Cruz C, Di Meglio P, Contreras CR, Choon SE, Capon F, Torres T, Naldi L, Weinman J, Brown MA, Galloway JB, Norton S, Lambert J, Spuls P, Van Huizen AM, Jullien D, Bachelez H, McMahon DE, Freeman EE, Gisondi P, Puig L, Warren RB, Langan SM, Sufka P, Robinson PC, Yazdany J, Griffiths CEM, Barker JN, Machado PM, and Smith CH.

Published
2022

10. Factors associated with severe COVID-19 in people with idiopathic inflammatory myopathy: results from the COVID-19 Global Rheumatology Alliance physician-reported registry

Author

Yeoh, S, Gianfrancesco, M, Lawson-Tovey, S, Hyrich, K, Strangfeld, A, Gossec, L, Carmona, L, Mateus, E, Schafer, M, Richez, C, Hachulla, E, Holmqvist, M, Scire, C, Lorenz, H, Voll, R, Hasseli, R, Jayatilleke, A, Hsu, T, D'Silva, K, Pimentel-Quiroz, V, Vasquez Del Mercado, M, Shinjo, S, Neto, E, Junior, L, De Oliveira E Silva Montandon, A, Pons-Estel, G, Ornella, S, D'Angelo Exeni, M, Velozo, E, Jordan, P, Sirotich, E, Hausmann, J, Liew, J, Jacobsohn, L, Gore-Massy, M, Sufka, P, Grainger, R, Bhana, S, Wallace, Z, Robinson, P, Yazdany, J, Machado, P, Yeoh S. -A., Gianfrancesco M., Lawson-Tovey S., Hyrich K. L., Strangfeld A., Gossec L., Carmona L., Mateus E. F., Schafer M., Richez C., Hachulla E., Holmqvist M., Scire C. A., Lorenz H. -M., Voll R. E., Hasseli R., Jayatilleke A., Hsu T. Y. -T., D'Silva K. M., Pimentel-Quiroz V. R., Vasquez Del Mercado M., Shinjo S. K., Neto E. T. D. R., Junior L. F. D. R., De Oliveira E Silva Montandon A. C., Pons-Estel G. J., Ornella S., D'Angelo Exeni M. E., Velozo E., Jordan P., Sirotich E., Hausmann J. S., Liew J. W., Jacobsohn L., Gore-Massy M., Sufka P., Grainger R., Bhana S., Wallace Z., Robinson P. C., Yazdany J., MacHado P. M., Yeoh, S, Gianfrancesco, M, Lawson-Tovey, S, Hyrich, K, Strangfeld, A, Gossec, L, Carmona, L, Mateus, E, Schafer, M, Richez, C, Hachulla, E, Holmqvist, M, Scire, C, Lorenz, H, Voll, R, Hasseli, R, Jayatilleke, A, Hsu, T, D'Silva, K, Pimentel-Quiroz, V, Vasquez Del Mercado, M, Shinjo, S, Neto, E, Junior, L, De Oliveira E Silva Montandon, A, Pons-Estel, G, Ornella, S, D'Angelo Exeni, M, Velozo, E, Jordan, P, Sirotich, E, Hausmann, J, Liew, J, Jacobsohn, L, Gore-Massy, M, Sufka, P, Grainger, R, Bhana, S, Wallace, Z, Robinson, P, Yazdany, J, Machado, P, Yeoh S. -A., Gianfrancesco M., Lawson-Tovey S., Hyrich K. L., Strangfeld A., Gossec L., Carmona L., Mateus E. F., Schafer M., Richez C., Hachulla E., Holmqvist M., Scire C. A., Lorenz H. -M., Voll R. E., Hasseli R., Jayatilleke A., Hsu T. Y. -T., D'Silva K. M., Pimentel-Quiroz V. R., Vasquez Del Mercado M., Shinjo S. K., Neto E. T. D. R., Junior L. F. D. R., De Oliveira E Silva Montandon A. C., Pons-Estel G. J., Ornella S., D'Angelo Exeni M. E., Velozo E., Jordan P., Sirotich E., Hausmann J. S., Liew J. W., Jacobsohn L., Gore-Massy M., Sufka P., Grainger R., Bhana S., Wallace Z., Robinson P. C., Yazdany J., and MacHado P. M.

Abstract

Objectives To investigate factors associated with severe COVID-19 in people with idiopathic inflammatory myopathy (IIM). Methods Demographic data, clinical characteristics and COVID-19 outcome severity of adults with IIM were obtained from the COVID-19 Global Rheumatology Alliance physician-reported registry. A 3-point ordinal COVID-19 severity scale was defined: (1) no hospitalisation, (2) hospitalisation (and no death) and (3) death. ORs were estimated using multivariable ordinal logistic regression. Sensitivity analyses were performed using a 4-point ordinal scale: (1) no hospitalisation, (2) hospitalisation with no oxygen (and no death), (3) hospitalisation with oxygen/ventilation (and no death) and 4) death. Results Of 348 patients, 48% were not hospitalised, 39% were hospitalised (and did not die) and 13% died. Older age (OR=1.59/decade, 95% CI 1.31 to 1.91), high disease activity (OR=3.50, 95% CI 1.25 to 9.83; vs remission), ≥2 comorbidities (OR=2.63, 95% CI 1.39 to 4.98; vs none), prednisolone-equivalent dose >7.5 mg/day (OR=2.40, 95% CI 1.09 to 5.28; vs no intake) and exposure to rituximab (OR=2.71, 95% CI 1.28 to 5.72; vs conventional synthetic disease-modifying antirheumatic drugs only) were independently associated with severe COVID-19. In addition to these variables, in the sensitivity analyses, male sex (OR range: 1.65-1.83; vs female) was also significantly associated with severe outcomes, while COVID-19 diagnosis after 1 October 2020 (OR range: 0.51-0.59; vs on/before 15 June 2020) was significantly associated with less severe outcomes, but these associations were not significant in the main model (OR=1.57, 95% CI 0.95 to 2.59; and OR=0.61, 95% CI 0.37 to 1.00; respectively). Conclusions This is the first large registry data on outcomes of COVID-19 in people with IIM. Older age, male sex, higher comorbidity burden, high disease activity, prednisolone-equivalent dose >7.5 mg/day and rituximab exposure were associated with severe COVID-19. These

Published
2022

11. Characteristics and Outcomes of People With Gout Hospitalized Due to COVID-19: Data From the COVID-19 Global Rheumatology Alliance Physician-Reported Registry

Author

Jatuworapruk, K, Montgomery, A, Gianfrancesco, M, Conway, R, Durcan, L, Graef, E, Jayatilleke, A, Keen, H, Kilian, A, Young, K, Carmona, L, Cogo, A, Duarte-Garcia, A, Gossec, L, Hasseli, R, Hyrich, K, Langlois, V, Lawson-Tovey, S, Malcata, A, Mateus, E, Schafer, M, Scire, C, Sigurdardottir, V, Sparks, J, Strangfeld, A, Xavier, R, Bhana, S, Gore-Massy, M, Hausmann, J, Liew, J, Sirotich, E, Sufka, P, Wallace, Z, Machado, P, Yazdany, J, Grainger, R, Robinson, P, Jatuworapruk K., Montgomery A., Gianfrancesco M., Conway R., Durcan L., Graef E. R., Jayatilleke A., Keen H., Kilian A., Young K., Carmona L., Cogo A. K., Duarte-Garcia A., Gossec L., Hasseli R., Hyrich K. L., Langlois V., Lawson-Tovey S., Malcata A., Mateus E. F., Schafer M., Scire C. A., Sigurdardottir V., Sparks J. A., Strangfeld A., Xavier R. M., Bhana S., Gore-Massy M., Hausmann J., Liew J. W., Sirotich E., Sufka P., Wallace Z., Machado P. M., Yazdany J., Grainger R., Robinson P. C., Jatuworapruk, K, Montgomery, A, Gianfrancesco, M, Conway, R, Durcan, L, Graef, E, Jayatilleke, A, Keen, H, Kilian, A, Young, K, Carmona, L, Cogo, A, Duarte-Garcia, A, Gossec, L, Hasseli, R, Hyrich, K, Langlois, V, Lawson-Tovey, S, Malcata, A, Mateus, E, Schafer, M, Scire, C, Sigurdardottir, V, Sparks, J, Strangfeld, A, Xavier, R, Bhana, S, Gore-Massy, M, Hausmann, J, Liew, J, Sirotich, E, Sufka, P, Wallace, Z, Machado, P, Yazdany, J, Grainger, R, Robinson, P, Jatuworapruk K., Montgomery A., Gianfrancesco M., Conway R., Durcan L., Graef E. R., Jayatilleke A., Keen H., Kilian A., Young K., Carmona L., Cogo A. K., Duarte-Garcia A., Gossec L., Hasseli R., Hyrich K. L., Langlois V., Lawson-Tovey S., Malcata A., Mateus E. F., Schafer M., Scire C. A., Sigurdardottir V., Sparks J. A., Strangfeld A., Xavier R. M., Bhana S., Gore-Massy M., Hausmann J., Liew J. W., Sirotich E., Sufka P., Wallace Z., Machado P. M., Yazdany J., Grainger R., and Robinson P. C.

Abstract

Objective To describe people with gout who were diagnosed with coronavirus disease 2019 (COVID-19) and hospitalized and to characterize their outcomes. Methods Data on patients with gout hospitalized for COVID-19 between March 12, 2020, and October 25, 2021, were extracted from the COVID-19 Global Rheumatology Alliance registry. Descriptive statistics were used to describe the demographics, comorbidities, medication exposures, and COVID-19 outcomes including oxygenation or ventilation support and death. Results One hundred sixty-three patients with gout who developed COVID-19 and were hospitalized were included. The mean age was 63 years, and 85% were male. The majority of the group lived in the Western Pacific Region (35%) and North America (18%). Nearly half (46%) had two or more comorbidities, with hypertension (56%), cardiovascular disease (28%), diabetes mellitus (26%), chronic kidney disease (25%), and obesity (23%) being the most common. Glucocorticoids and colchicine were used pre-COVID-19 in 11% and 12% of the cohort, respectively. Over two thirds (68%) of the cohort required supplemental oxygen or ventilatory support during hospitalization. COVID-19-related death was reported in 16% of the overall cohort, with 73% of deaths documented in people with two or more comorbidities. Conclusion This cohort of people with gout and COVID-19 who were hospitalized had high frequencies of ventilatory support and death. This suggests that patients with gout who were hospitalized for COVID-19 may be at risk of poor outcomes, perhaps related to known risk factors for poor outcomes, such as age and presence of comorbidity.

Published
2022

12. OP0079 OMICRON VARIANT INFECTION IN INFLAMMATORY RHEUMATOLOGICAL CONDITIONS - OUTCOMES FROM A COVID-19 NAIVE POPULATION IN AOTEAROA NEW ZEALAND

Author

Brooks, J., primary, Montgomery, A., additional, Dalbeth, N., additional, Sapsford, M., additional, Cooper, A., additional, Ngan Kee, R., additional, Quincey, V., additional, Liew, J., additional, Bhana, S., additional, Gore-Massy, M., additional, Hausmann, J., additional, Machado, P., additional, Sufka, P., additional, Sirotich, E., additional, Robinson, P., additional, Wallace, Z., additional, Yazdany, J., additional, and Grainger, R., additional

Published
2023
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15. Whakawhanaungatanga: the importance of culturally meaningful connections to improve uptake of pulmonary rehabilitation by Māori with COPD – a qualitative study

Author

Levack WMM, Jones B, Grainger R, Bol, P, Brown M, and Ingham TR

Subjects
COPD, pulmonary rehabilitation, healthcare access, cultural safety, indigenous people, qualitative research, Diseases of the respiratory system, RC705-779
Abstract

William MM Levack, Bernadette Jones, Rebecca Grainger, Pauline Boland, Melanie Brown, Tristram R Ingham Department of Medicine, University of Otago, Wellington, New Zealand Background: Pulmonary rehabilitation is known to improve function and quality of life for people with chronic obstructive pulmonary disease (COPD). However, little research has been conducted on the influence of culture on experiences of pulmonary rehabilitation. This study examined factors influencing uptake of pulmonary rehabilitation by Māori with COPD in New Zealand. Method: Grounded theory nested within kaupapa Māori methodology. Transcripts were analyzed from interviews and focus groups with 15 Māori and ten New Zealand non-Māori invited to attend pulmonary rehabilitation for COPD. Māori participants had either attended a mainstream hospital-based program, a community-based program designed “by Māori, for Māori”, or had experienced both. Results: Several factors influencing uptake of pulmonary rehabilitation were common to all participants regardless of ethnicity: 1) participants’ past experiences (eg, of exercise; of health care systems), 2) attitudes and expectations, 3) access issues (eg, time, transport, and conflicting responsibilities), and 4) initial program experiences. These factors were moderated by the involvement of family and peers, interactions with health professionals, the way information on programs was presented, and by new illness events. For Māori, however, several additional factors were also identified relating to cultural experiences of pulmonary rehabilitation. In particular, Māori participants placed high value on whakawhanaungatanga: the making of culturally meaningful connections with others. Culturally appropriate communication and relationship building was deemed so important by some Māori participants that when it was absent, they felt strongly discouraged to attend pulmonary rehabilitation. Only the more holistic services offered a program in which they felt culturally safe and to which they were willing to return for ongoing rehabilitation. Conclusion: Lack of attention to cultural factors in the delivery of pulmonary rehabilitation may be a barrier to its uptake by indigenous, minority ethnic groups, such as New Zealand Māori. Indigenous-led or culturally responsive health care interventions for COPD may provide a solution to this issue. Keywords: COPD, pulmonary rehabilitation, health care access, cultural safety, indigenous peoples, qualitative research

Published
2016

21. Factors associated with COVID-19-related death in people with rheumatic diseases: Results from the COVID-19 Global Rheumatology Alliance physician-reported registry

Author

Strangfeld, A, Schafer, M, Gianfrancesco, M, Lawson-Tovey, S, Liew, J, Ljung, L, Mateus, E, Richez, C, Santos, M, Schmajuk, G, Scire, C, Sirotich, E, Sparks, J, Sufka, P, Thomas, T, Trupin, L, Wallace, Z, Al-Adely, S, Bachiller-Corral, J, Bhana, S, Cacoub, P, Carmona, L, Costello, R, Costello, W, Gossec, L, Grainger, R, Hachulla, E, Hasseli, R, Hausmann, J, Hyrich, K, Izadi, Z, Jacobsohn, L, Katz, P, Kearsley-Fleet, L, Robinson, P, Yazdany, J, Machado, P, Strangfeld A., Schafer M., Gianfrancesco M. A., Lawson-Tovey S., Liew J. W., Ljung L., Mateus E. F., Richez C., Santos M. J., Schmajuk G., Scire C. A., Sirotich E., Sparks J. A., Sufka P., Thomas T., Trupin L., Wallace Z. S., Al-Adely S., Bachiller-Corral J., Bhana S., Cacoub P., Carmona L., Costello R., Costello W., Gossec L., Grainger R., Hachulla E., Hasseli R., Hausmann J. S., Hyrich K. L., Izadi Z., Jacobsohn L., Katz P., Kearsley-Fleet L., Robinson P. C., Yazdany J., Machado P. M., Strangfeld, A, Schafer, M, Gianfrancesco, M, Lawson-Tovey, S, Liew, J, Ljung, L, Mateus, E, Richez, C, Santos, M, Schmajuk, G, Scire, C, Sirotich, E, Sparks, J, Sufka, P, Thomas, T, Trupin, L, Wallace, Z, Al-Adely, S, Bachiller-Corral, J, Bhana, S, Cacoub, P, Carmona, L, Costello, R, Costello, W, Gossec, L, Grainger, R, Hachulla, E, Hasseli, R, Hausmann, J, Hyrich, K, Izadi, Z, Jacobsohn, L, Katz, P, Kearsley-Fleet, L, Robinson, P, Yazdany, J, Machado, P, Strangfeld A., Schafer M., Gianfrancesco M. A., Lawson-Tovey S., Liew J. W., Ljung L., Mateus E. F., Richez C., Santos M. J., Schmajuk G., Scire C. A., Sirotich E., Sparks J. A., Sufka P., Thomas T., Trupin L., Wallace Z. S., Al-Adely S., Bachiller-Corral J., Bhana S., Cacoub P., Carmona L., Costello R., Costello W., Gossec L., Grainger R., Hachulla E., Hasseli R., Hausmann J. S., Hyrich K. L., Izadi Z., Jacobsohn L., Katz P., Kearsley-Fleet L., Robinson P. C., Yazdany J., and Machado P. M.

Abstract

Objectives To determine factors associated with COVID-19-related death in people with rheumatic diseases. Methods Physician-reported registry of adults with rheumatic disease and confirmed or presumptive COVID-19 (from 24 March to 1 July 2020). The primary outcome was COVID-19-related death. Age, sex, smoking status, comorbidities, rheumatic disease diagnosis, disease activity and medications were included as covariates in multivariable logistic regression models. Analyses were further stratified according to rheumatic disease category. Results Of 3729 patients (mean age 57 years, 68% female), 390 (10.5%) died. Independent factors associated with COVID-19-related death were age (66-75 years: OR 3.00, 95% CI 2.13 to 4.22; >75 years: 6.18, 4.47 to 8.53; both vs ≤65 years), male sex (1.46, 1.11 to 1.91), hypertension combined with cardiovascular disease (1.89, 1.31 to 2.73), chronic lung disease (1.68, 1.26 to 2.25) and prednisolone-equivalent dosage >10 mg/day (1.69, 1.18 to 2.41; vs no glucocorticoid intake). Moderate/high disease activity (vs remission/low disease activity) was associated with higher odds of death (1.87, 1.27 to 2.77). Rituximab (4.04, 2.32 to 7.03), sulfasalazine (3.60, 1.66 to 7.78), immunosuppressants (azathioprine, cyclophosphamide, ciclosporin, mycophenolate or tacrolimus: 2.22, 1.43 to 3.46) and not receiving any disease-modifying anti-rheumatic drug (DMARD) (2.11, 1.48 to 3.01) were associated with higher odds of death, compared with methotrexate monotherapy. Other synthetic/biological DMARDs were not associated with COVID-19-related death. Conclusion Among people with rheumatic disease, COVID-19-related death was associated with known general factors (older age, male sex and specific comorbidities) and disease-specific factors (disease activity and specific medications). The association with moderate/high disease activity highlights the importance of adequate disease control with DMARDs, preferably without increasing glucocorticoid dos

Published
2021

22. Associations of baseline use of biologic or targeted synthetic DMARDs with COVID-19 severity in rheumatoid arthritis: Results from the COVID-19 Global Rheumatology Alliance physician registry

Author

Sparks, J, Wallace, Z, Seet, A, Gianfrancesco, M, Izadi, Z, Hyrich, K, Strangfeld, A, Gossec, L, Carmona, L, Mateus, E, Lawson-Tovey, S, Trupin, L, Rush, S, Katz, P, Schmajuk, G, Jacobsohn, L, Wise, L, Gilbert, E, Duarte-Garcia, A, Valenzuela-Almada, M, Pons-Estel, G, Isnardi, C, Berbotto, G, Hsu, T, D'Silva, K, Patel, N, Kearsley-Fleet, L, Schafer, M, Ribeiro, S, Al Emadi, S, Tidblad, L, Scire, C, Raffeiner, B, Thomas, T, Flipo, R, Avouac, J, Seror, R, Bernardes, M, Cunha, M, Hasseli, R, Schulze-Koops, H, Muller-Ladner, U, Specker, C, De Souza, V, Da Mota, L, Gomides, A, Dieude, P, Nikiphorou, E, Kronzer, V, Singh, N, Ugarte-Gil, M, Wallace, B, Akpabio, A, Thomas, R, Bhana, S, Costello, W, Grainger, R, Hausmann, J, Liew, J, Sirotich, E, Sufka, P, Robinson, P, Machado, P, Yazdany, J, Sparks J. A., Wallace Z. S., Seet A. M., Gianfrancesco M. A., Izadi Z., Hyrich K. L., Strangfeld A., Gossec L., Carmona L., Mateus E. F., Lawson-Tovey S., Trupin L., Rush S., Katz P., Schmajuk G., Jacobsohn L., Wise L., Gilbert E. L., Duarte-Garcia A., Valenzuela-Almada M. O., Pons-Estel G. J., Isnardi C. A., Berbotto G. A., Hsu T. Y. -T., D'Silva K. M., Patel N. J., Kearsley-Fleet L., Schafer M., Ribeiro S. L. E., Al Emadi S., Tidblad L., Scire C. A., Raffeiner B., Thomas T., Flipo R. -M., Avouac J., Seror R., Bernardes M., Cunha M. M., Hasseli R., Schulze-Koops H., Muller-Ladner U., Specker C., De Souza V. A., Da Mota L. M. H., Gomides A. P. M., Dieude P., Nikiphorou E., Kronzer V. L., Singh N., Ugarte-Gil M. F., Wallace B., Akpabio A., Thomas R., Bhana S., Costello W., Grainger R., Hausmann J. S., Liew J. W., Sirotich E., Sufka P., Robinson P. C., MacHado P. M., Yazdany J., Sparks, J, Wallace, Z, Seet, A, Gianfrancesco, M, Izadi, Z, Hyrich, K, Strangfeld, A, Gossec, L, Carmona, L, Mateus, E, Lawson-Tovey, S, Trupin, L, Rush, S, Katz, P, Schmajuk, G, Jacobsohn, L, Wise, L, Gilbert, E, Duarte-Garcia, A, Valenzuela-Almada, M, Pons-Estel, G, Isnardi, C, Berbotto, G, Hsu, T, D'Silva, K, Patel, N, Kearsley-Fleet, L, Schafer, M, Ribeiro, S, Al Emadi, S, Tidblad, L, Scire, C, Raffeiner, B, Thomas, T, Flipo, R, Avouac, J, Seror, R, Bernardes, M, Cunha, M, Hasseli, R, Schulze-Koops, H, Muller-Ladner, U, Specker, C, De Souza, V, Da Mota, L, Gomides, A, Dieude, P, Nikiphorou, E, Kronzer, V, Singh, N, Ugarte-Gil, M, Wallace, B, Akpabio, A, Thomas, R, Bhana, S, Costello, W, Grainger, R, Hausmann, J, Liew, J, Sirotich, E, Sufka, P, Robinson, P, Machado, P, Yazdany, J, Sparks J. A., Wallace Z. S., Seet A. M., Gianfrancesco M. A., Izadi Z., Hyrich K. L., Strangfeld A., Gossec L., Carmona L., Mateus E. F., Lawson-Tovey S., Trupin L., Rush S., Katz P., Schmajuk G., Jacobsohn L., Wise L., Gilbert E. L., Duarte-Garcia A., Valenzuela-Almada M. O., Pons-Estel G. J., Isnardi C. A., Berbotto G. A., Hsu T. Y. -T., D'Silva K. M., Patel N. J., Kearsley-Fleet L., Schafer M., Ribeiro S. L. E., Al Emadi S., Tidblad L., Scire C. A., Raffeiner B., Thomas T., Flipo R. -M., Avouac J., Seror R., Bernardes M., Cunha M. M., Hasseli R., Schulze-Koops H., Muller-Ladner U., Specker C., De Souza V. A., Da Mota L. M. H., Gomides A. P. M., Dieude P., Nikiphorou E., Kronzer V. L., Singh N., Ugarte-Gil M. F., Wallace B., Akpabio A., Thomas R., Bhana S., Costello W., Grainger R., Hausmann J. S., Liew J. W., Sirotich E., Sufka P., Robinson P. C., MacHado P. M., and Yazdany J.

Abstract

Objective To investigate baseline use of biologic or targeted synthetic (b/ts) disease-modifying antirheumatic drugs (DMARDs) and COVID-19 outcomes in rheumatoid arthritis (RA). Methods We analysed the COVID-19 Global Rheumatology Alliance physician registry (from 24 March 2020 to 12 April 2021). We investigated b/tsDMARD use for RA at the clinical onset of COVID-19 (baseline): abatacept (ABA), rituximab (RTX), Janus kinase inhibitors (JAKi), interleukin 6 inhibitors (IL-6i) or tumour necrosis factor inhibitors (TNFi, reference group). The ordinal COVID-19 severity outcome was (1) no hospitalisation, (2) hospitalisation without oxygen, (3) hospitalisation with oxygen/ventilation or (4) death. We used ordinal logistic regression to estimate the OR (odds of being one level higher on the ordinal outcome) for each drug class compared with TNFi, adjusting for potential baseline confounders. Results Of 2869 people with RA (mean age 56.7 years, 80.8% female) on b/tsDMARD at the onset of COVID-19, there were 237 on ABA, 364 on RTX, 317 on IL-6i, 563 on JAKi and 1388 on TNFi. Overall, 613 (21%) were hospitalised and 157 (5.5%) died. RTX (OR 4.15, 95% CI 3.16 to 5.44) and JAKi (OR 2.06, 95% CI 1.60 to 2.65) were each associated with worse COVID-19 severity compared with TNFi. There were no associations between ABA or IL6i and COVID-19 severity. Conclusions People with RA treated with RTX or JAKi had worse COVID-19 severity than those on TNFi. The strong association of RTX and JAKi use with poor COVID-19 outcomes highlights prioritisation of risk mitigation strategies for these people.

Published
2021

23. Association between age at disease onset of anti-neutrophil cytoplasmic antibody-associated vasculitis and clinical presentation and short-term outcomes

Author

Monti, S., Craven, A., Klersy, C., Montecucco, C., Caporali, R., Watts, R., Merkel, P. A., Luqmani, R., Achilleos, K., Adler, M., Alba, M. A., Albert, D. A., Alibaz-Oner, F., Allcoat, P., Amano, K., Amarasuriya, M., Amudala, N. A., Andrews, J., Archer, A. M., Arimura, Y., Atukorala, I., Azevedo, E., Bajad, S., Baldwin, C., Barra, L. J., Baslund, B., Basu, N., Baykal, M., Berger, C., Berglin, E., Besada, E., Bhardwaj, M., Bischof, A., Blockmans, D., Blood, J., Draibe, J. B., Brand, S., Brandao, M., Bruce, I. N., Butler, A., Calabrese, L. H., Ferrer, D. C., Carette, S., Carmona, D., Ceunen, H., Chakravarty, K., Chapman, P. T., Chocova, Z., Chung, S. A., Ci, W., Cid, M. C., Clark, T. M., Clarkson, M. R., De Jesus Contreras-Rodriguez, F., Conway, R., Cooke, K., Viros, X. C., Cordeiro, A., Costa, A., Culfear, K., Daikeler, T., Danda, D., Das, S. K., Dasgupta, B., De Castro, A. M., Dehghan, N., Devassy, R., Dhindsa, N., Diamantopoulos, A. P., Direskeneli, H., Dobashi, H., Juan, D., Durrani, M., Edelsten, C., Eifert, J., Elhayek, S., Elsideeg, S., Endo, T., Erden, A., Erer, B., Eriksson, P., Erturk, Z., Espigol-Frigole, G., Felicetti, M., Ferraro, A., Ferro, J. M., Fifi-Mah, A., Flores-Suarez, L. F., Flossmann, O., Flynn, D., Fonseca, J. E., Foot, J., Foote, M., Forbess, L., Fujimoto, S., Fukuoka, K., Furtado, C., Furuta, S., Gaffo, A. L., Gallagher, P., Gao, N., Gatenby, P., Gendi, N., Geraldes, R., Gerits, A., Gioffredi, A., Gomples, L., Goncalves, M. J., Gondo, P., Graham, A., Grainger, R., Gray, D. T., Grayson, P. C., Griffiths, L., Guo, Y., Gupta, R., Gylling, M., Hajj-Ali, R. A., Hammam, N., Harigai, M., Hartley, L., Haslett, J., Hassan, A., Hatemi, G., Hellmich, B., Henckaerts, L., Henes, J. C., Hepburn, J., Herd, V., Hess, C., Hill, C., Hinojosa-Azaola, A., Hirahashi, J., Hirano, F., Hocevar, A., Holle, J., Hollinger, N., Homma, S., Howard, T., Hoyles, R. K., Hruskova, Z., Hutcheon, G., Ignacak, M., Igney-Oertel, A., Ikeda, K., Ikegaya, N., Jagadeesh, S., Jaquith, J., Jayne, D. R. W., Jewell, T., Jones, C., Joshi, A., Kalyoncu, U., Kamall, S., Kamath, S., Lai, K. S., Kaname, S., Kanchinadham, S., Karadag, O., Karube, M., Kaszuba, M., Kaur, R., Kawakami, T., Kawashima, S., Khalidi, N., Khan, A., Kikuchi, M., Kilic, L., Kimura, M., King, M. J., Klapa, S., Klocke, R., Kobayashi, T., Kobayashi, S., Komagata, Y., Kronbichler, A., Kuczia, P., Kumar, M. S., Kurosawa, M., Lamprecht, P., Langford, C. A., Lanyon, P., Laversuch, C., Lee, S. J., Leoni, S., Li, J., Liang, K., Liang, P., Liao, H., Lee, L. A., Luqmani, R. A., Lyle, A., Macdonald, M., Mackie, S. L., Madden, L., Magliano, M., Makino, H., Makol, A., Malaiya, R., Malaviya, A., Manthri, R., Maritati, F., Da Silva, A. M., Mason, J. C., Matara, C., Matsui, K., Matteson, E. L., Mcbride, D., Mccullough, K., Mcgeoch, L., Mclaren, J., Mcmillian, C., Mendiratta, N., Menon, A., Merinopoulos, D., Merkel, P., Messier, S., Micheletti, R. G., Mills, K., Milman, N., Minoda, M., Minz, R. W., Mock, C., Mohammad, A. J., Moiseev, S., Moitinho, M., Molloy, E., Monach, P. A., Montgomery, M., Moosig, F., Moradizadeh, M., Morgan, M., Morgan, A. W., Morgan, A. -M., Muir, A., Mukhtyar, C., Muller, A., Muratore, F., Muso, E., Nada, R., Nakajima, H., Nakajima, T., Nakano, H., Nandagudi, A., Neumann, T., Y. F., Ng, K. H., Ng, Nogueira, E. L., Nolkha, N., Nordstrom, D., Novikov, P., Nugaliyadde, A., O'Donnell, J. L., O'Donoghue, J., O'Neill, L., O'Riordan, E., Oatley, M., Okubo, K., Oliva, E., Oshikawa, H., Ota, Y., Padoan, R., Pagnoux, C., Pan, L., Panaritis, K., Park, J. K., Patel, S., Patil, P., Pazzola, G., Peall, A., Pearce, F., Pehlevan, S., Pereira, L., Pettersson, T., Pineau, C. A., Pirila, L., Poglodek, B., Ponte, C., Prieto-Gonzalez, S., Priya, S. R., Purewal, B., Purschke, S., Putaala, J., Quickert, S., Quincey, V., Raghuvanshi, S., Rajasekhar, L., Ranganathan, D., Rathi, M., Rees, D., Rees, F., Renken, U., Restuccia, G., Rhee, R. L., Rice, B., Robins, D., Robson, J., Rodrigues, M., Romao, V. C., Rotar, C., Ruediger, C., Rutgers, A., A. C., Sa, Saavedra, M. J., Sada, K. -E., Sahbudin, I., Salvarani, C., Sandhu, N., Santos, E., Sato, Y., Schafer, V. S., Schiavon, F., Schmidt, W. A., Segelmark, M., Shahin, A., Sharma, A., Shotton, J., Silva, C., Singer, O. G., Sivasuthan, G., Smolen, S., Solanich-Moreno, X., Boixader, L. S., Song, Y. W., Springer, J., Sreih, A. G., Srivastava, R., Stamp, L. K., Stevens, R., Strbian, D., Sugino, K., Sunderkotter, C., Suppiah, R., Suzuki, K., Szekanecz, Z., Sznajd, J., Taimen, K., Tak, P. P., Takeuchi, T., Takizawa, N., Tames, L., Tan, B. E., Tanaka, M., Tang, M. W., Tatlisumak, T., Tesar, V., Thomas, A., Tian, X., Tokunaga, K., Tombetti, E., Tomsic, M., Toz, B., Tsukamoto, T., Uchida, S., Unal, A. U., Urban, M. L., Usui, J., Vaglio, A., Venkatachalam, S., Vermaak, E., Viswanath, V., Wada, T., Wagh, S., Wallace, D. J., Walters, G., Walz, B., Wan, J., Wang, T., Wang, G., Warrington, K. J., Watts, R. A., Wawrzycka-Adamczyk, K., Weeratunga, P., Weisman, M. H., Wickramasinghe, S., Williams, M., Wojcik, K., Woodruff, L., Xenitidis, T., Yamada, H., Yamagata, K., Yee, C. -S., Yoon, M., Yoshida, K., Yoshifuji, H., Ytterberg, S. R., Yumura, W., Zayed, H., Zeng, X., Zhao, M. -H., Zugaj, A., Zuk, J., İç Hastalıkları, Clinical Haematology, and Translational Immunology Groningen (TRIGR)

Subjects
Male, Outcome, Antineutrophil Cytoplasmic, 030232 urology & nephrology, 0302 clinical medicine, Risk Factors, 80 and over, Pharmacology (medical), Age of Onset, Young adult, Aged, 80 and over, education.field_of_study, age, anti-neutrophil cytoplasmic antibody-associated vasculitis, outcome, Adolescent, Adult, Aged, Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis, Antibodies, Antineutrophil Cytoplasmic, Female, Humans, Middle Aged, Morbidity, Prognosis, Retrospective Studies, Risk Assessment, Survival Rate, United Kingdom, Young Adult, Vasculitis, Systemic vasculitis, medicine.medical_specialty, Population, anti-neutrophil cytoplasmic antibody–associated vasculitis, Antibodies, 03 medical and health sciences, Rheumatology, Internal medicine, medicine, education, Anti-neutrophil cytoplasmic antibody–associated vasculitis, Survival rate, Anti-neutrophil cytoplasmic antibody, 030203 arthritis & rheumatology, business.industry, Retrospective cohort study, medicine.disease, Age of onset, business
Abstract

Objectives ANCA-associated vasculitis (AAV) can affect all age groups. We aimed to show that differences in disease presentation and 6 month outcome between younger- and older-onset patients are still incompletely understood. Methods We included patients enrolled in the Diagnostic and Classification Criteria for Primary Systemic Vasculitis (DCVAS) study between October 2010 and January 2017 with a diagnosis of AAV. We divided the population according to age at diagnosis: Results A total of 1338 patients with AAV were included: 66% had disease onset at Conclusion Within 6 months of diagnosis of AAV, patients >65 years of age display a different pattern of organ involvement and an increased risk of significant damage and mortality compared with younger patients.

Published
2021

24. Integrating Biologging and Behavioral State Modeling to Identify Cryptic Behaviors and Post-capture Recovery Processes: New Insights From a Threatened Marine Apex Predator

Author

Grainger, R, Raubenheimer, D, Peddemors, VM, Butcher, Paul, Machovsky-Capuska, GE, Grainger, R, Raubenheimer, D, Peddemors, VM, Butcher, Paul, and Machovsky-Capuska, GE

Abstract

Multisensor biologging provides a powerful tool for ecological research, enabling fine-scale observation of animals to directly link physiology and movement to behavior across ecological contexts. However, applied research into behavioral disturbance and recovery following human interventions (e.g., capture and translocation) has mostly relied on coarse location-based tracking or unidimensional approaches (e.g., dive profiles and activity/energetic metrics) that may not resolve behaviors and recovery processes. Biologging can improve insights into both disturbed and natural behavior, which is critical for management and conservation initiatives, although challenges remain in objectively identifying distinct behavioral modes from complex multisensor datasets. Using white sharks (Carcharodon carcharias) released from a non-lethal catch-and-release shark bite mitigation program, we explored how combining multisensor biologging (video, depth, accelerometers, gyroscopes, and magnetometers), track reconstruction and behavioral state modeling using hidden Markov models (HMMs) can improve our understanding of behavioral processes and recovery. Biologging tags were deployed on eight white sharks, recording their continuous behaviors, movements, and environmental context (habitat, interactions with other organisms/objects) for periods of 10–87 h post-release. Dive profiles and tailbeat analysis (as a standard, activity-based method for assessing recovery) indicated an immediate “disturbed” period of offshore movement, displaying rapid tailbeats and an average tailbeat-derived recovery period of 9.7 h, with evidence of smaller individuals having longer recoveries. However, further integrating magnetometer-derived headings, track reconstruction and HMM modeling revealed a cryptic shift to diurnal clockwise-counterclockwise circling behavior, which we argue represents compelling new evidence for hypothesized unihemispheric sleep amongst elasmob

Published
2022

25. Feasibility of a randomised controlled trial of two types of written information for people with knee osteoarthritis.

Author

Darlow, B, Brown, M, Hudson, B, Frew, G, Clark, J, Vincent, L, Abbott, JH, Briggs, AM, Grainger, R, Marra, C, McKinlay, E, Stanley, J, Darlow, B, Brown, M, Hudson, B, Frew, G, Clark, J, Vincent, L, Abbott, JH, Briggs, AM, Grainger, R, Marra, C, McKinlay, E, and Stanley, J

Abstract

OBJECTIVE: Test the feasibility of conducting an individually randomised controlled trial recruiting people with knee osteoarthritis (OA) in community pharmacies and evaluate the impacts of a novel information booklet. DESIGN: People with knee OA were identified by pharmacy staff using clinical criteria and randomised to receive a novel information booklet (intervention) or the currently available written OA resource (active control). Mixed-methods process evaluation assessed participant recruitment, retention, and experience. Participant-reported outcome measures, assessing OA illness perceptions, OA knowledge, fear of movement, and pain when walking at baseline and 4-weeks, were analysed using linear regression models (adjusted for baseline). RESULTS: Of 72 eligible people, 64 were randomised to intervention (n ​= ​33) or control (n ​= ​31). The randomisation sequence was followed correctly and no protocol deviations identified. Mean recruitment rate was 2.7 participants per pharmacy per week. One-in-five participants had no educational qualifications and one-in-four had not received a knee OA diagnosis prior to the trial. Three meta-themes emerged from pharmacist and participant qualitative analysis: 'pleased to be asked'; 'easy process'; and 'successful process'. Three participants were lost to follow-up. At 4 weeks, intervention arm Knee Osteoarthritis Knowledge Scale scores improved (mean difference ​= ​3.6, 95%CI 0.7 to 6.5). Brief Illness Perceptions Questionnaire scores were similar between groups (mean difference 0.4, 95%CI -3.7 to 4.5). CONCLUSION: It is feasible to conduct an individually randomised trial in community pharmacy, a potentially effective setting to initiate accessible OA care. A novel information booklet improved OA knowledge, but is unlikely to affect illness perceptions on its own.

Published
2022

26. Prolonged COVID-19 symptom duration in people with systemic autoimmune rheumatic diseases: results from the COVID-19 Global Rheumatology Alliance Vaccine Survey

Author

DiIorio, M, Kennedy, K, Liew, JW, Putman, MS, Sirotich, E, Sattui, SE, Foster, G, Harrison, C, Larche, MJ, Levine, M, Moni, TT, Thabane, L, Bhana, S, Costello, W, Grainger, R, Machado, PM, Robinson, PC, Sufka, P, Wallace, ZS, Yazdany, J, Gore-Massy, M, Howard, RA, Kodhek, MA, Lalonde, N, Tomasella, L-A, Wallace, J, Akpabio, A, Alpizar-Rodriguez, D, Beesley, RP, Berenbaum, F, Bulina, I, Chock, EY, Conway, R, Duarte-Garcia, A, Duff, E, Gheita, TA, Graef, ER, Hsieh, E, El Kibbi, L, Liew, DFL, Lo, C, Nudel, M, Singh, AD, Singh, JA, Singh, N, Ugarte-Gil, MF, Hausmann, JS, Simard, JF, Sparks, JA, DiIorio, M, Kennedy, K, Liew, JW, Putman, MS, Sirotich, E, Sattui, SE, Foster, G, Harrison, C, Larche, MJ, Levine, M, Moni, TT, Thabane, L, Bhana, S, Costello, W, Grainger, R, Machado, PM, Robinson, PC, Sufka, P, Wallace, ZS, Yazdany, J, Gore-Massy, M, Howard, RA, Kodhek, MA, Lalonde, N, Tomasella, L-A, Wallace, J, Akpabio, A, Alpizar-Rodriguez, D, Beesley, RP, Berenbaum, F, Bulina, I, Chock, EY, Conway, R, Duarte-Garcia, A, Duff, E, Gheita, TA, Graef, ER, Hsieh, E, El Kibbi, L, Liew, DFL, Lo, C, Nudel, M, Singh, AD, Singh, JA, Singh, N, Ugarte-Gil, MF, Hausmann, JS, Simard, JF, and Sparks, JA

Abstract

OBJECTIVE: We investigated prolonged COVID-19 symptom duration, defined as lasting 28 days or longer, among people with systemic autoimmune rheumatic diseases (SARDs). METHODS: We analysed data from the COVID-19 Global Rheumatology Alliance Vaccine Survey (2 April 2021-15 October 2021) to identify people with SARDs reporting test-confirmed COVID-19. Participants reported COVID-19 severity and symptom duration, sociodemographics and clinical characteristics. We reported the proportion experiencing prolonged symptom duration and investigated associations with baseline characteristics using logistic regression. RESULTS: We identified 441 respondents with SARDs and COVID-19 (mean age 48.2 years, 83.7% female, 39.5% rheumatoid arthritis). The median COVID-19 symptom duration was 15 days (IQR 7, 25). Overall, 107 (24.2%) respondents had prolonged symptom duration (≥28 days); 42/429 (9.8%) reported symptoms lasting ≥90 days. Factors associated with higher odds of prolonged symptom duration included: hospitalisation for COVID-19 vs not hospitalised and mild acute symptoms (age-adjusted OR (aOR) 6.49, 95% CI 3.03 to 14.1), comorbidity count (aOR 1.11 per comorbidity, 95% CI 1.02 to 1.21) and osteoarthritis (aOR 2.11, 95% CI 1.01 to 4.27). COVID-19 onset in 2021 vs June 2020 or earlier was associated with lower odds of prolonged symptom duration (aOR 0.42, 95% CI 0.21 to 0.81). CONCLUSION: Most people with SARDs had complete symptom resolution by day 15 after COVID-19 onset. However, about 1 in 4 experienced COVID-19 symptom duration 28 days or longer; 1 in 10 experienced symptoms 90 days or longer. Future studies are needed to investigate the possible relationships between immunomodulating medications, SARD type/flare, vaccine doses and novel viral variants with prolonged COVID-19 symptoms and other postacute sequelae of COVID-19 among people with SARDs.

Published
2022

29. OP0249 CHARACTERISTICS ASSOCIATED WITH POOR COVID-19 OUTCOMES IN PEOPLE WITH PSORIASIS AND SPONDYLOARTHRITIS: DATA FROM THE COVID-19 PsoProtect AND GLOBAL RHEUMATOLOGY ALLIANCE PHYSICIAN-REPORTED REGISTRIES

Author

Machado, P. M., primary, Schaefer, M., additional, Mahil, S., additional, Dand, N., additional, Gianfrancesco, M., additional, Lawson-Tovey, S., additional, Yiu, Z., additional, Yates, M., additional, Hyrich, K., additional, Gossec, L., additional, Carmona, L., additional, Mateus, E., additional, Wiek, D., additional, Bhana, S., additional, Gore-Massy, M., additional, Grainger, R., additional, Hausmann, J., additional, Sufka, P., additional, Sirotich, E., additional, Wallace, Z., additional, Olofsson, T., additional, Lomater, C., additional, Romeo, N., additional, Wendling, D., additional, Pham, T., additional, Miceli Richard, C., additional, Fautrel, B., additional, Silva, L., additional, Santos, H., additional, Martins, F. R., additional, Hasseli, R., additional, Pfeil, A., additional, Regierer, A., additional, Isnardi, C., additional, Soriano, E., additional, Quintana, R., additional, Omura, F., additional, Machado Ribeiro, F., additional, Pinheiro, M., additional, Bautista-Molano, W., additional, Alpizar-Rodriguez, D., additional, Saad, C., additional, Dubreuil, M., additional, Haroon, N., additional, Gensler, L. S., additional, Dau, J., additional, Jacobsohn, L., additional, Liew, J., additional, Strangfeld, A., additional, Barker, J., additional, Griffiths, C. E. M., additional, Robinson, P., additional, Yazdany, J., additional, and Smith, C., additional

Published
2022
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30. OP0252 FACTORS ASSOCIATED WITH SEVERE COVID-19 OUTCOMES IN PATIENTS WITH IDIOPATHIC INFLAMMATORY MYOPATHY: RESULTS FROM THE COVID-19 GLOBAL RHEUMATOLOGY ALLIANCE PHYSICIAN-REPORTED REGISTRY

Author

Yeoh, S. A., primary, Gianfrancesco, M., additional, Lawson-Tovey, S., additional, Hyrich, K., additional, Strangfeld, A., additional, Gossec, L., additional, Carmona, L., additional, Mateus, E., additional, Schaefer, M., additional, Richez, C., additional, Hachulla, E., additional, Holmqvist, M., additional, Scirè, C. A., additional, Hasseli, R., additional, Jayatilleke, A., additional, Hsu, T., additional, D’Silva, K., additional, Pimentel-Quiroz, V., additional, Vasquez del Mercado, M., additional, Katsuyuki Shinjo, S., additional, Reis Neto, E., additional, Rocha, L., additional, Montandon, A. C. D. O. E. S., additional, Jordan, P., additional, Sirotich, E., additional, Hausmann, J., additional, Liew, J., additional, Jacobsohn, L., additional, Gore-Massy, M., additional, Sufka, P., additional, Grainger, R., additional, Bhana, S., additional, Wallace, Z., additional, Robinson, P., additional, Yazdany, J., additional, and Machado, P., additional

Published
2022
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31. AB0583 REFERRAL PATTERN AND TREATMENT OF POLYMYALGIA RHEUMATICA IN GENERAL PRACTICE: AN INTERNATIONAL QUESTIONNAIRE BASED STUDY

Author

Overgaard Donskov, A., primary, Mackie, S., additional, Hauge, E. M., additional, Toro Gutiérrez, C., additional, Hemmig, A., additional, Van der Maas, A., additional, Dalsgaard Nielsen, B., additional, Hansen, I., additional, Yates, M., additional, Frølund, L., additional, Douglas, K., additional, Van der Geest, K., additional, Rezus, E., additional, Monti, S., additional, Gromova, M., additional, Ocampo, V., additional, Appenzeller, S., additional, Erraoui, M., additional, Ajibade, A., additional, Marun Lyrio, A., additional, Grainger, R., additional, Sandovici, M., additional, Helliwell, T., additional, Brouwer, E., additional, Dejaco, C., additional, and Keller, K., additional

Published
2022
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32. 2022 American College of Rheumatology/European Alliance of Associations for Rheumatology Classification Criteria for Eosinophilic Granulomatosis With Polyangiitis

Author

Grayson, P. C., Ponte, C., Suppiah, R., Robson, J. C., Craven, A., Judge, A., Khalid, S., Hutchings, A., Luqmani, R. A., Watts, R. A., Merkel, P. A., Gatenby, P., Hill, C., Ranganathan, D., Kronbichler, A., Blockmans, D., Barra, L., Carette, S., Pagnoux, C., Dhindsa, N., Fifi-Mah, A., Khalidi, N., Liang, P., Milman, N., Pineau, C., Tian, X., Wang, G., Wang, T., Zhao, M. -H., Tesar, V., Baslund, B., Hammam, N., Shahin, A., Pirila, L., Putaala, J., Hellmich, B., Henes, J., Lamprecht, P., Neumann, T., Schmidt, W., Sunderkoetter, C., Szekanecz, Z., Danda, D., Das, S., Gupta, R., Rajasekhar, L., Sharma, A., Wagh, S., Clarkson, M., Molloy, E., Salvarani, C., Schiavon, F., Tombetti, E., Vaglio, A., Amano, K., Arimura, Y., Dobashi, H., Fujimoto, S., Harigai, M., Hirano, F., Hirahashi, J., Honma, S., Kawakami, T., Kobayashi, S., Kono, H., Makino, H., Matsui, K., Muso, E., Suzuki, K., Ikeda, K., Takeuchi, T., Tsukamoto, T., Uchida, S., Wada, T., Yamada, H., Yamagata, K., Yumura, W., Lai, K. S., Flores-Suarez, L. F., Hinojosa, A., Rutgers, B., Tak, P. -P., Grainger, R., Quincey, V., Stamp, L., Besada, E., Diamantopoulos, A., Sznajd, J., Azevedo, E., Geraldes, R., Rodrigues, M., Santos, E., Song, Y. -W., Moiseev, S., Hocevar, A., Cid, M. C., Moreno, X. S., Atukorala, I., Berglin, E., Mohammed, A., Segelmark, M., Daikeler, T., Direskeneli, H., Hatemi, G., Kamali, S., Karadag, O., Pehlevan, S., Adler, M., Basu, N., Bruce, I., Chakravarty, K., Dasgupta, B., Flossmann, O., Gendi, N., Hassan, A., Hoyles, R., Jayne, D., Jones, C., Klocke, R., Lanyon, P., Laversuch, C., Luqmani, R., Robson, J., Magliano, M., Mason, J., Maw, W. W., Mcinnes, I., Mclaren, J., Morgan, M., Morgan, A., Mukhtyar, C., O'Riordan, E., Patel, S., Peall, A., Venkatachalam, S., Vermaak, E., Menon, A., Watts, R., Yee, C. -S., Albert, D., Calabrese, L., Chung, S., Forbess, L., Gaffo, A., Gewurz-Singer, O., Grayson, P., Liang, K., Matteson, E., Springer, J., Sreih, A., and Translational Immunology Groningen (TRIGR)

Subjects
Adult, Male, Vasculitis, Myeloblastin, Immunology, Churg-Strauss Syndrome, Sensitivity and Specificity, General Biochemistry, Genetics and Molecular Biology, Antibodies, Antineutrophil Cytoplasmic, Diagnosis, Differential, Rheumatology, Risk Factors, Humans, Immunology and Allergy, anti-neutrophil cytoplasm antibody, Prospective Studies, Aged, Granulomatosis with Polyangiitis, Reproducibility of Results, Middle Aged, United States, Female, eosinophilic granulomatosis with polyangiitis, Eosinophilic Granuloma, Europe, classification, Societies
Abstract

ObjectiveTo develop and validate revised classification criteria for eosinophilic granulomatosis with polyangiitis (EGPA).MethodsPatients with vasculitis or comparator diseases were recruited into an international cohort. The study proceeded in five phases: (1) identification of candidate criteria items using consensus methodology, (2) prospective collection of candidate items present at the time of diagnosis, (3) data-driven reduction of the number of candidate items, (4) expert panel review of cases to define the reference diagnosis and (5) derivation of a points-based risk score for disease classification in a development set using least absolute shrinkage and selection operator logistic regression, with subsequent validation of performance characteristics in an independent set of cases and comparators.ResultsThe development set for EGPA consisted of 107 cases of EGPA and 450 comparators. The validation set consisted of an additional 119 cases of EGPA and 437 comparators. From 91 candidate items, regression analysis identified 11 items for EPGA, 7 of which were retained. The final criteria and their weights were as follows: maximum eosinophil count ≥1×109/L (+5), obstructive airway disease (+3), nasal polyps (+3), cytoplasmic antineutrophil cytoplasmic antibody (ANCA) or anti-proteinase 3–ANCA positivity (−3), extravascular eosinophilic predominant inflammation (+2), mononeuritis multiplex/motor neuropathy not due to radiculopathy (+1) and haematuria (−1). After excluding mimics of vasculitis, a patient with a diagnosis of small- or medium-vessel vasculitis could be classified as having EGPA if the cumulative score was ≥6 points. When these criteria were tested in the validation data set, the sensitivity was 85% (95% CI 77% to 91%) and the specificity was 99% (95% CI 98% to 100%).ConclusionThe 2022 American College of Rheumatology/European Alliance of Associations for Rheumatology Classification Criteria for Eosinophilic Granulomatosis with Polyangiitis demonstrate strong performance characteristics and are validated for use in research.

Published
2022

39. Gout, Hyperuricemia, and Crystal-Associated Disease Network Consensus Statement Regarding Labels and Definitions for Disease Elements in Gout

Author

Bursill, D, Taylor, W, Terkeltaub, R, Kuwabara, M, Merriman, T, Grainger, R, Pineda, C, Louthrenoo, W, Edwards, N, Andres, M, Vargas-Santos, A, Roddy, E, Pascart, T, Lin, C, Perez-Ruiz, F, Tedeschi, S, Kim, S, Harrold, L, Mccarthy, G, Kumar, N, Chapman, P, Tausche, A, Vazquez-Mellado, J, Gutierrez, M, da Rocha Castelar-Pinheiro, G, Richette, P, Pascual, E, Fisher, M, Burgos-Vargas, R, Robinson, P, Singh, J, Jansen, T, Saag, K, Slot, O, Uhlig, T, Solomon, D, Keenan, R, Scire, C, Biernat-Kaluza, E, Dehlin, M, Nuki, G, Schlesinger, N, Janssen, M, Stamp, L, Sivera, F, Reginato, A, Jacobsson, L, Liote, F, H. -K., E, Rosenthal, A, Bardin, T, Choi, H, Hershfield, M, Czegley, C, Choi, S, Dalbeth, N, Bursill D., Taylor W. J., Terkeltaub R., Kuwabara M., Merriman T. R., Grainger R., Pineda C., Louthrenoo W., Edwards N. L., Andres M., Vargas-Santos A. B., Roddy E., Pascart T., Lin C. -T., Perez-Ruiz F., Tedeschi S. K., Kim S. C., Harrold L. R., McCarthy G., Kumar N., Chapman P., Tausche A. -K., Vazquez-Mellado J., Gutierrez M., da Rocha Castelar-Pinheiro G., Richette P., Pascual E., Fisher M. C., Burgos-Vargas R., Robinson P. C., Singh J. A., Jansen T. L., Saag K. G., Slot O., Uhlig T., Solomon D. H., Keenan R. T., Scire C. A., Biernat-Kaluza E., Dehlin M., Nuki G., Schlesinger N., Janssen M., Stamp L. K., Sivera F., Reginato A. M., Jacobsson L., Liote F., Ea H. -K., Rosenthal A., Bardin T., Choi H. K., Hershfield M. S., Czegley C., Choi S. J., Dalbeth N., Bursill, D, Taylor, W, Terkeltaub, R, Kuwabara, M, Merriman, T, Grainger, R, Pineda, C, Louthrenoo, W, Edwards, N, Andres, M, Vargas-Santos, A, Roddy, E, Pascart, T, Lin, C, Perez-Ruiz, F, Tedeschi, S, Kim, S, Harrold, L, Mccarthy, G, Kumar, N, Chapman, P, Tausche, A, Vazquez-Mellado, J, Gutierrez, M, da Rocha Castelar-Pinheiro, G, Richette, P, Pascual, E, Fisher, M, Burgos-Vargas, R, Robinson, P, Singh, J, Jansen, T, Saag, K, Slot, O, Uhlig, T, Solomon, D, Keenan, R, Scire, C, Biernat-Kaluza, E, Dehlin, M, Nuki, G, Schlesinger, N, Janssen, M, Stamp, L, Sivera, F, Reginato, A, Jacobsson, L, Liote, F, H. -K., E, Rosenthal, A, Bardin, T, Choi, H, Hershfield, M, Czegley, C, Choi, S, Dalbeth, N, Bursill D., Taylor W. J., Terkeltaub R., Kuwabara M., Merriman T. R., Grainger R., Pineda C., Louthrenoo W., Edwards N. L., Andres M., Vargas-Santos A. B., Roddy E., Pascart T., Lin C. -T., Perez-Ruiz F., Tedeschi S. K., Kim S. C., Harrold L. R., McCarthy G., Kumar N., Chapman P., Tausche A. -K., Vazquez-Mellado J., Gutierrez M., da Rocha Castelar-Pinheiro G., Richette P., Pascual E., Fisher M. C., Burgos-Vargas R., Robinson P. C., Singh J. A., Jansen T. L., Saag K. G., Slot O., Uhlig T., Solomon D. H., Keenan R. T., Scire C. A., Biernat-Kaluza E., Dehlin M., Nuki G., Schlesinger N., Janssen M., Stamp L. K., Sivera F., Reginato A. M., Jacobsson L., Liote F., Ea H. -K., Rosenthal A., Bardin T., Choi H. K., Hershfield M. S., Czegley C., Choi S. J., and Dalbeth N.

Abstract

Objective: The language currently used to describe gout lacks standardization. The aim of this project was to develop a consensus statement on the labels and definitions used to describe the basic disease elements of gout. Methods: Experts in gout (n = 130) were invited to participate in a Delphi exercise and face-to-face consensus meeting to reach consensus on the labeling and definitions for the basic disease elements of gout. Disease elements and labels in current use were derived from a content analysis of the contemporary medical literature, and the results of this analysis were used for item selection in the Delphi exercise and face-to-face consensus meeting. Results: There were 51 respondents to the Delphi exercise and 30 attendees at the face-to-face meeting. Consensus agreement (≥80%) was achieved for the labels of 8 disease elements through the Delphi exercise; the remaining 3 labels reached consensus agreement through the face-to-face consensus meeting. The agreed labels were monosodium urate crystals, urate, hyperuric(a)emia, tophus, subcutaneous tophus, gout flare, intercritical gout, chronic gouty arthritis, imaging evidence of monosodium urate crystal deposition, gouty bone erosion, and podagra. Participants at the face-to-face meeting achieved consensus agreement for the definitions of all 11 elements and a recommendation that the label “chronic gout” should not be used. Conclusion: Consensus agreement was achieved for the labels and definitions of 11 elements representing the fundamental components of gout etiology, pathophysiology, and clinical presentation. The Gout, Hyperuricemia, and Crystal-Associated Disease Network recommends the use of these labels when describing the basic disease elements of gout.

Published
2019

40. Gout, Hyperuricaemia and Crystal-Associated Disease Network (G-CAN) consensus statement regarding labels and definitions of disease states of gout

Author

Bursill, D, Taylor, W, Terkeltaub, R, Abhishek, A, A. K., S, Vargas-Santos, A, Gaffo, A, Rosenthal, A, Tausche, A, Reginato, A, Manger, B, Scire, C, Pineda, C, Van Durme, C, Lin, C, Yin, C, Albert, D, Biernat-Kaluza, E, Roddy, E, Pascual, E, Becce, F, Perez-Ruiz, F, Sivera, F, Liote, F, Schett, G, Nuki, G, Filippou, G, Mccarthy, G, Da Rocha Castelar Pinheiro, G, H. -K., E, Tupinamba, H, Yamanaka, H, Choi, H, Mackay, J, Odell, J, Vazquez Mellado, J, Singh, J, Fitzgerald, J, Jacobsson, L, Joosten, L, Harrold, L, Stamp, L, Andres, M, Gutierrez, M, Kuwabara, M, Dehlin, M, Janssen, M, Doherty, M, Hershfield, M, Pillinger, M, Edwards, N, Schlesinger, N, Kumar, N, Slot, O, Ottaviani, S, Richette, P, Macmullan, P, Chapman, P, Lipsky, P, Robinson, P, Khanna, P, Gancheva, R, Grainger, R, Johnson, R, Te Kampe, R, Keenan, R, Tedeschi, S, Kim, S, Choi, S, Fields, T, Bardin, T, Uhlig, T, Jansen, T, Merriman, T, Pascart, T, Neogi, T, Kluck, V, Louthrenoo, W, Dalbeth, N, Bursill D., Taylor W. J., Terkeltaub R., Abhishek A., So A. K., Vargas-Santos A. B., Gaffo A. L., Rosenthal A., Tausche A. -K., Reginato A., Manger B., Scire CA., Pineda C., Van Durme C., Lin C. -T., Yin C., Albert D. A., Biernat-Kaluza E., Roddy E., Pascual E., Becce F., Perez-Ruiz F., Sivera F., Liote F., Schett G., Nuki G., Filippou G., Mccarthy G., Da Rocha Castelar Pinheiro G., Ea H. -K., Tupinamba H. D. A., Yamanaka H., Choi H. K., Mackay J., Odell J. R., Vazquez Mellado J., Singh J. A., Fitzgerald J. D., Jacobsson L. T. H., Joosten L., Harrold L. R., Stamp L., Andres M., Gutierrez M., Kuwabara M., Dehlin M., Janssen M., Doherty M., Hershfield M. S., Pillinger M., Edwards N. L., Schlesinger N., Kumar N., Slot O., Ottaviani S., Richette P., Macmullan P. A., Chapman P. T., Lipsky P. E., Robinson P., Khanna P. P., Gancheva R. N., Grainger R., Johnson R. J., Te Kampe R., Keenan R. T., Tedeschi S. K., Kim S., Choi S. J., Fields T. R., Bardin T., Uhlig T., Jansen T., Merriman T., Pascart T., Neogi T., Kluck V., Louthrenoo W., Dalbeth N., Bursill, D, Taylor, W, Terkeltaub, R, Abhishek, A, A. K., S, Vargas-Santos, A, Gaffo, A, Rosenthal, A, Tausche, A, Reginato, A, Manger, B, Scire, C, Pineda, C, Van Durme, C, Lin, C, Yin, C, Albert, D, Biernat-Kaluza, E, Roddy, E, Pascual, E, Becce, F, Perez-Ruiz, F, Sivera, F, Liote, F, Schett, G, Nuki, G, Filippou, G, Mccarthy, G, Da Rocha Castelar Pinheiro, G, H. -K., E, Tupinamba, H, Yamanaka, H, Choi, H, Mackay, J, Odell, J, Vazquez Mellado, J, Singh, J, Fitzgerald, J, Jacobsson, L, Joosten, L, Harrold, L, Stamp, L, Andres, M, Gutierrez, M, Kuwabara, M, Dehlin, M, Janssen, M, Doherty, M, Hershfield, M, Pillinger, M, Edwards, N, Schlesinger, N, Kumar, N, Slot, O, Ottaviani, S, Richette, P, Macmullan, P, Chapman, P, Lipsky, P, Robinson, P, Khanna, P, Gancheva, R, Grainger, R, Johnson, R, Te Kampe, R, Keenan, R, Tedeschi, S, Kim, S, Choi, S, Fields, T, Bardin, T, Uhlig, T, Jansen, T, Merriman, T, Pascart, T, Neogi, T, Kluck, V, Louthrenoo, W, Dalbeth, N, Bursill D., Taylor W. J., Terkeltaub R., Abhishek A., So A. K., Vargas-Santos A. B., Gaffo A. L., Rosenthal A., Tausche A. -K., Reginato A., Manger B., Scire CA., Pineda C., Van Durme C., Lin C. -T., Yin C., Albert D. A., Biernat-Kaluza E., Roddy E., Pascual E., Becce F., Perez-Ruiz F., Sivera F., Liote F., Schett G., Nuki G., Filippou G., Mccarthy G., Da Rocha Castelar Pinheiro G., Ea H. -K., Tupinamba H. D. A., Yamanaka H., Choi H. K., Mackay J., Odell J. R., Vazquez Mellado J., Singh J. A., Fitzgerald J. D., Jacobsson L. T. H., Joosten L., Harrold L. R., Stamp L., Andres M., Gutierrez M., Kuwabara M., Dehlin M., Janssen M., Doherty M., Hershfield M. S., Pillinger M., Edwards N. L., Schlesinger N., Kumar N., Slot O., Ottaviani S., Richette P., Macmullan P. A., Chapman P. T., Lipsky P. E., Robinson P., Khanna P. P., Gancheva R. N., Grainger R., Johnson R. J., Te Kampe R., Keenan R. T., Tedeschi S. K., Kim S., Choi S. J., Fields T. R., Bardin T., Uhlig T., Jansen T., Merriman T., Pascart T., Neogi T., Kluck V., Louthrenoo W., and Dalbeth N.

Abstract

Objective There is a lack of standardisation in the terminology used to describe gout. The aim of this project was to develop a consensus statement describing the recommended nomenclature for disease states of gout. Methods A content analysis of gout-related articles from rheumatology and general internal medicine journals published over a 5-year period identified potential disease states and the labels commonly assigned to them. Based on these findings, experts in gout were invited to participate in a Delphi exercise and face-to-face consensus meeting to reach agreement on disease state labels and definitions. Results The content analysis identified 13 unique disease states and a total of 63 unique labels. The Delphi exercise (n=76 respondents) and face-to-face meeting (n=35 attendees) established consensus agreement for eight disease state labels and definitions. The agreed labels were as follows: asymptomatic hyperuricaemia', asymptomatic monosodium urate crystal deposition', asymptomatic hyperuricaemia with monosodium urate crystal deposition', gout', tophaceous gout', erosive gout', first gout flare' and recurrent gout flares'. There was consensus agreement that the label gout' should be restricted to current or prior clinically evident disease caused by monosodium urate crystal deposition (gout flare, chronic gouty arthritis or subcutaneous tophus). Conclusion Consensus agreement has been established for the labels and definitions of eight gout disease states, including gout' itself. The Gout, Hyperuricaemia and Crystal-Associated Disease Network recommends the use of these labels when describing disease states of gout in research and clinical practice.

Published
2019

46. Serum urate as a proposed surrogate outcome measure in gout trials: From the OMERACT working group

Author

Morillon M.B., Christensen R., Singh J.A., Dalbeth N., Saag K., Taylor W.J., Neogi T., Kennedy M.A., Pedersen B.M., McCarthy G.M., Shea B., Diaz-Torne C., Tedeschi S.K., Grainger R., Abhishek A., Gaffo A., Nielsen S.M., Noerup A., Simon L.S., Lassere M., Tugwell P., Stamp L.K., and Gout Working Group F.T.O.

Subjects
Patient Research Partners, Gout, Serum urate, Surrogate, OMERACT, Biomarker
Abstract

Serum urate (SU) is the most common primary efficacy outcome in trials of urate-lowering therapies for gout. Despite this, it is not formally considered a validated surrogate outcome. In this paper we will outline the definitions of biomarkers and surrogate outcome measures, respectively as well as the available frameworks and challenges in the assessment of the validity of serum urate as a surrogate in gout (i.e. a reasonable replacement for gout symptoms). © 2021 Elsevier Inc.

Published
2021

47. Immediate effect of the COVID-19 pandemic on patient health, health-care use, and behaviours: results from an international survey of people with rheumatic diseases

Author

Hausmann, JS, Kennedy, K, Simard, JF, Liew, JW, Sparks, JA, Moni, T, Harrison, C, Larche, MJ, Levine, M, Sattui, SE, Semalulu, T, Foster, G, Surangiwala, S, Thabane, L, Beesley, RP, Durrant, KL, Mateus, EF, Mingolla, S, Nudel, M, Palmerlee, CA, Richards, DP, Liew, DFL, Hill, CL, Bhana, S, Costello, W, Grainger, R, Machado, PM, Robinson, PC, Sufka, P, Wallace, ZS, Yazdany, J, Sirotich, E, Hausmann, JS, Kennedy, K, Simard, JF, Liew, JW, Sparks, JA, Moni, T, Harrison, C, Larche, MJ, Levine, M, Sattui, SE, Semalulu, T, Foster, G, Surangiwala, S, Thabane, L, Beesley, RP, Durrant, KL, Mateus, EF, Mingolla, S, Nudel, M, Palmerlee, CA, Richards, DP, Liew, DFL, Hill, CL, Bhana, S, Costello, W, Grainger, R, Machado, PM, Robinson, PC, Sufka, P, Wallace, ZS, Yazdany, J, and Sirotich, E

Abstract

BACKGROUND: The impact and consequences of the COVID-19 pandemic on people with rheumatic disease are unclear. We developed the COVID-19 Global Rheumatology Alliance Patient Experience Survey to assess the effects of the COVID-19 pandemic on people with rheumatic disease worldwide. METHODS: Survey questions were developed by key stakeholder groups and disseminated worldwide through social media, websites, and patient support organisations. Questions included demographics, rheumatic disease diagnosis, COVID-19 diagnosis, adoption of protective behaviours to mitigate COVID-19 exposure, medication access and changes, health-care access and communication with rheumatologists, and changes in employment or schooling. Adults age 18 years and older with inflammatory or autoimmune rheumatic diseases were eligible for inclusion. We included participants with and without a COVID-19 diagnosis. We excluded participants reporting only non-inflammatory rheumatic diseases such as fibromyalgia or osteoarthritis. FINDINGS: 12 117 responses to the survey were received between April 3 and May 8, 2020, and of these, 10 407 respondents had included appropriate age data. We included complete responses from 9300 adults with rheumatic disease (mean age 46·1 years; 8375 [90·1%] women, 893 [9·6%] men, and 32 [0·3%] participants who identified as non-binary). 6273 (67·5%) of respondents identified as White, 1565 (16·8%) as Latin American, 198 (2·1%) as Black, 190 (2·0%) as Asian, and 42 (0·5%) as Native American or Aboriginal or First Nation. The most common rheumatic disease diagnoses included rheumatoid arthritis (3636 [39·1%] of 9300), systemic lupus erythematosus (2882 [31·0%]), and Sjögren's syndrome (1290 [13·9%]). Most respondents (6921 [82·0%] of 8441) continued their antirheumatic medications as prescribed. Almost all (9266 [99·7%] of 9297) respondents adopted protective behaviours to limit SARS-CoV-2 exposure. A change in employment status occurred in 2524 (27·1%) of 9300) of respond

Published
2021

48. Early experience of COVID-19 vaccination in adults with systemic rheumatic diseases: results from the COVID-19 Global Rheumatology Alliance Vaccine Survey

Author

Sattui, SE, Liew, JW, Kennedy, K, Sirotich, E, Putman, M, Moni, TT, Akpabio, A, Alpizar-Rodriguez, D, Berenbaum, F, Bulina, I, Conway, R, Singh, AD, Duff, E, Durrant, KL, Gheita, TA, Hill, CL, Howard, RA, Hoyer, BF, Hsieh, E, El Kibbi, L, Kilian, A, Kim, AH, Liew, DFL, Lo, C, Miller, B, Mingolla, S, Nudel, M, Palmerlee, CA, Singh, JA, Singh, N, Ugarte-Gil, MF, Wallace, J, Young, KJ, Bhana, S, Costello, W, Grainger, R, Machado, PM, Robinson, PC, Sufka, P, Wallace, ZS, Yazdany, J, Harrison, C, Larche, M, Levine, M, Foster, G, Thabane, L, Rider, LG, Hausmann, JS, Simard, JF, Sparks, JA, Sattui, SE, Liew, JW, Kennedy, K, Sirotich, E, Putman, M, Moni, TT, Akpabio, A, Alpizar-Rodriguez, D, Berenbaum, F, Bulina, I, Conway, R, Singh, AD, Duff, E, Durrant, KL, Gheita, TA, Hill, CL, Howard, RA, Hoyer, BF, Hsieh, E, El Kibbi, L, Kilian, A, Kim, AH, Liew, DFL, Lo, C, Miller, B, Mingolla, S, Nudel, M, Palmerlee, CA, Singh, JA, Singh, N, Ugarte-Gil, MF, Wallace, J, Young, KJ, Bhana, S, Costello, W, Grainger, R, Machado, PM, Robinson, PC, Sufka, P, Wallace, ZS, Yazdany, J, Harrison, C, Larche, M, Levine, M, Foster, G, Thabane, L, Rider, LG, Hausmann, JS, Simard, JF, and Sparks, JA

Abstract

BACKGROUND: We describe the early experiences of adults with systemic rheumatic disease who received the COVID-19 vaccine. METHODS: From 2 April to 30 April 2021, we conducted an online, international survey of adults with systemic rheumatic disease who received COVID-19 vaccination. We collected patient-reported data on clinician communication, beliefs and intent about discontinuing disease-modifying antirheumatic drugs (DMARDs) around the time of vaccination, and patient-reported adverse events after vaccination. RESULTS: We analysed 2860 adults with systemic rheumatic diseases who received COVID-19 vaccination (mean age 55.3 years, 86.7% female, 86.3% white). Types of COVID-19 vaccines were Pfizer-BioNTech (53.2%), Oxford/AstraZeneca (22.6%), Moderna (21.3%), Janssen/Johnson & Johnson (1.7%) and others (1.2%). The most common rheumatic disease was rheumatoid arthritis (42.3%), and 81.2% of respondents were on a DMARD. The majority (81.9%) reported communicating with clinicians about vaccination. Most (66.9%) were willing to temporarily discontinue DMARDs to improve vaccine efficacy, although many (44.3%) were concerned about rheumatic disease flares. After vaccination, the most reported patient-reported adverse events were fatigue/somnolence (33.4%), headache (27.7%), muscle/joint pains (22.8%) and fever/chills (19.9%). Rheumatic disease flares that required medication changes occurred in 4.6%. CONCLUSION: Among adults with systemic rheumatic disease who received COVID-19 vaccination, patient-reported adverse events were typical of those reported in the general population. Most patients were willing to temporarily discontinue DMARDs to improve vaccine efficacy. The relatively low frequency of rheumatic disease flare requiring medications was reassuring.

Published
2021

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