F. R. Kasiem, A. Pasma, J. Luime, I. Tchetverikov, K. Wervers, L. Korswagen, N. Denissen, Y. Goekoop-Ruiterman, M. van Oosterhout, F. Fodili, J. M. Hazes, M. V. van Doorn, M. Kok, M. Vis
Objective Rheumatologists play a pivotal role in the management of patients with psoriatic arthritis (PsA). Due to time constraints during clinic visits, the skin may not receive the attention needed for optimal patient outcome. Therefore, the aim of this study was to select a set of core questions that can help rheumatologists in daily rheumatology clinical practice to identify patients with PsA with a high skin burden. Methods Baseline data from patients included in the Dutch South West Psoriatic Arthritis (DEPAR) cohort were used. Questions were derived from the Skindex-17 and Dermatology Life Quality Index (DLQI) questionnaires. Underlying clusters of questions were identified with an exploratory principal component analysis (PCA) with varimax rotation, after which a 2-parameter logistic model was fitted per cluster. Questions were selected based on their discrimination and difficulty. Subsequently, 2 flowcharts were made with categories of skin burden severity. Clinical considerations were specified per category. Results In total, 413 patients were included. The PCA showed 2 underlying clusters: a psychosocial domain and a domain assessing physical symptoms. We selected these 2 domains. The psychosocial domain contains 3 questions and specifies 4 categories of skin burden severity. The physical symptoms domain contains 2 questions and categorizes patients in 1 out of 3 categories. Conclusion We have selected a set with a maximum of 5 questions that rheumatologists can easily implement in their consultation to assess skin burden in patients with PsA. This practical guide makes the assessment of skin burden more accessible to rheumatologists and can aid in clinical decision making.
目的风湿病学家在银屑病关节炎(PsA)患者的治疗中起着关键作用。由于门诊时间的限制，皮肤可能没有得到最佳患者结果所需的关注。因此，本研究的目的是选择一组核心问题，以帮助风湿病医生在日常风湿病临床实践中识别皮肤负担高的PsA患者。方法采用荷兰西南银屑病关节炎(DEPAR)队列患者的基线数据。问题来源于skinindex -17和Dermatology Life Quality Index (DLQI)问卷。通过探索性主成分分析(PCA)识别问题的潜在聚类，然后对每个聚类拟合一个2参数逻辑模型。根据问题的区别性和难度来选择问题。随后制作2个皮肤负荷严重程度分类流程图。每个类别都指定了临床考虑因素。结果共纳入413例患者。PCA显示了2个潜在的集群:社会心理领域和评估身体症状的领域。我们选择了这两个域。社会心理领域包含3个问题，并指定了4类皮肤负担严重程度。身体症状领域包含2个问题，并将患者分为3类中的1类。结论我们选择了一组最多有5个问题的问题，风湿病学家可以在他们的咨询中轻松地评估PsA患者的皮肤负担。本实用指南使风湿病学家更容易获得皮肤负荷评估，并有助于临床决策。
{"title":"A Practical Guide for Assessment of Skin Burden in Patients With Psoriatic Arthritis","authors":"F. R. Kasiem, A. Pasma, J. Luime, I. Tchetverikov, K. Wervers, L. Korswagen, N. Denissen, Y. Goekoop-Ruiterman, M. van Oosterhout, F. Fodili, J. M. Hazes, M. V. van Doorn, M. Kok, M. Vis","doi":"10.3899/jrheum.210550","DOIUrl":"https://doi.org/10.3899/jrheum.210550","url":null,"abstract":"Objective Rheumatologists play a pivotal role in the management of patients with psoriatic arthritis (PsA). Due to time constraints during clinic visits, the skin may not receive the attention needed for optimal patient outcome. Therefore, the aim of this study was to select a set of core questions that can help rheumatologists in daily rheumatology clinical practice to identify patients with PsA with a high skin burden. Methods Baseline data from patients included in the Dutch South West Psoriatic Arthritis (DEPAR) cohort were used. Questions were derived from the Skindex-17 and Dermatology Life Quality Index (DLQI) questionnaires. Underlying clusters of questions were identified with an exploratory principal component analysis (PCA) with varimax rotation, after which a 2-parameter logistic model was fitted per cluster. Questions were selected based on their discrimination and difficulty. Subsequently, 2 flowcharts were made with categories of skin burden severity. Clinical considerations were specified per category. Results In total, 413 patients were included. The PCA showed 2 underlying clusters: a psychosocial domain and a domain assessing physical symptoms. We selected these 2 domains. The psychosocial domain contains 3 questions and specifies 4 categories of skin burden severity. The physical symptoms domain contains 2 questions and categorizes patients in 1 out of 3 categories. Conclusion We have selected a set with a maximum of 5 questions that rheumatologists can easily implement in their consultation to assess skin burden in patients with PsA. This practical guide makes the assessment of skin burden more accessible to rheumatologists and can aid in clinical decision making.","PeriodicalId":35278,"journal":{"name":"The Journal of rheumatology. Supplement","volume":"118 1","pages":"1117 - 1123"},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"77453077","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
According to several international recommendations, disease activity should be regularly monitored with validated outcome measures in patients with axial spondyloarthritis (axSpA), and therapy should be adapted accordingly.1-3 Increasingly, healthcare providers are encouraged to also use patient-reported outcomes (PROs) for this purpose, to capture valuable data from the patient's perspective.
{"title":"The Use of Mobile Health Apps in Clinical Practice Remains Challenging","authors":"A. V. van Tubergen, Kasper Hermans","doi":"10.3899/jrheum.220476","DOIUrl":"https://doi.org/10.3899/jrheum.220476","url":null,"abstract":"According to several international recommendations, disease activity should be regularly monitored with validated outcome measures in patients with axial spondyloarthritis (axSpA), and therapy should be adapted accordingly.1-3 Increasingly, healthcare providers are encouraged to also use patient-reported outcomes (PROs) for this purpose, to capture valuable data from the patient's perspective.","PeriodicalId":35278,"journal":{"name":"The Journal of rheumatology. Supplement","volume":"62 1","pages":"861 - 863"},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"76313093","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Y. Kwan, W. Fong, T. H. Woon, Jie Kie Phang, Kelly Png, J. Lau, Ying-Ying Leung, C. Tan, T. Østbye, J. Thumboo
Objective Health-related quality of life (HRQOL) is an important aspect in the management of chronic diseases such as spondyloarthritis (SpA). A promising approach to reduce respondent burden when measuring HRQOL is the use of shorter patient-reported outcome measures (PROMs) delivered using computerized adaptive tests (CATs). However, the lack of an item bank that covers the entire continuum of the HRQOL domain impedes the development of CATs to measure HRQOL among patients with SpA. We aimed to develop an item bank for an HRQOL measure among patients with SpA based on the items from existing validated PROMs. Methods This study is guided by the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) and Patient Reported Outcomes Measurement Information System (PROMIS) standards. Relevant articles were retrieved from PubMed, Embase, and PsycINFO (Ovid) databases. Items from existing PROMs were binned and winnowed according to the facets of HRQOL in the World Health Organization (WHO) quality of life framework. Results We identified 147 relevant articles, from which written permission was obtained for including 31 PROMs into the item bank. PROMs contained 1039 items, which underwent binning and winnowing. This resulted in 968 items covering 23 domains of HRQOL in the WHO framework, with the number of items within each domain ranging from 1 to 453. Conclusion We created an item bank to measure HRQOL among patients with SpA using items from validated PROMs. This set can provide the foundation for the development of CATs to measure HRQOL among patients with SpA.
{"title":"Development of an Item Bank for a Health-Related Quality of Life Measure in Spondyloarthritis","authors":"Y. Kwan, W. Fong, T. H. Woon, Jie Kie Phang, Kelly Png, J. Lau, Ying-Ying Leung, C. Tan, T. Østbye, J. Thumboo","doi":"10.3899/jrheum.210980","DOIUrl":"https://doi.org/10.3899/jrheum.210980","url":null,"abstract":"Objective Health-related quality of life (HRQOL) is an important aspect in the management of chronic diseases such as spondyloarthritis (SpA). A promising approach to reduce respondent burden when measuring HRQOL is the use of shorter patient-reported outcome measures (PROMs) delivered using computerized adaptive tests (CATs). However, the lack of an item bank that covers the entire continuum of the HRQOL domain impedes the development of CATs to measure HRQOL among patients with SpA. We aimed to develop an item bank for an HRQOL measure among patients with SpA based on the items from existing validated PROMs. Methods This study is guided by the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) and Patient Reported Outcomes Measurement Information System (PROMIS) standards. Relevant articles were retrieved from PubMed, Embase, and PsycINFO (Ovid) databases. Items from existing PROMs were binned and winnowed according to the facets of HRQOL in the World Health Organization (WHO) quality of life framework. Results We identified 147 relevant articles, from which written permission was obtained for including 31 PROMs into the item bank. PROMs contained 1039 items, which underwent binning and winnowing. This resulted in 968 items covering 23 domains of HRQOL in the WHO framework, with the number of items within each domain ranging from 1 to 453. Conclusion We created an item bank to measure HRQOL among patients with SpA using items from validated PROMs. This set can provide the foundation for the development of CATs to measure HRQOL among patients with SpA.","PeriodicalId":35278,"journal":{"name":"The Journal of rheumatology. Supplement","volume":"23 1","pages":"1006 - 1011"},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"84507396","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
The 76th Annual Meeting of the Canadian Rheumatology Association was held virtually on February 2–5, 2022. The program consisted of presentations covering original research, symposia, awards, and lectures. Highlights of the meeting include the following 2022 Award Winners: Distinguished Rheumatologist, John G. Hanly and Lori B. Tucker; Distinguished Teacher-Educator, Stephen Aaron; Emerging Investigator, Jessica Widdifield; Ian Watson Award for the Best Abstract on SLE Research by a Trainee, Maher Banjari; Phil Rosen Award for the Best Abstract on Clinical or Epidemiology Research by a Trainee, Molly Dushnicky; Best Abstract by a Rheumatology Resident, Wen Qi; Best Abstract on Basic Science Research by a Trainee, Omar Cruz Correa; Best Abstract by a Post-Graduate Research Trainee, Holly Philpott; Best Abstract on Quality Care Initiatives in Rheumatology, Michael Zeeman; Best Abstract by a Medical Student, Samir Magdy Iskander; Best Abstract by an Undergraduate Student, Daniel Onwuka; Best Abstract by a Rheumatology Post-Graduate Research Trainee, Jennifer Lee; Best Abstract on Research by Young Faculty, Nancy Maltez; Best Abstract on Pediatric Research by Young Faculty, Chelsea DeCoste; Best Abstract on Spondyloarthritis Research, Vanessa Ocampo; Practice Reflection Award, Gold, Bailey Dyck. Lectures and other events included: Keynote Lecture by Grace Wright: Towards Equity: Is Everyone in the Rheum Paving the Path to Equity with Diversity?; State of the Art Lecture by Tuhina Neogi: Pain Across the Spectrum of Rheumatic Diseases; Dunlop-Dottridge Lecture by Simon Carette: Vasculitis: What Have We Learned in the Past 50 Years?; and the Great Debate: Be it Resolved that the Rheumatology Healthcare Provider Is Responsible for Prescribing and Monitoring Physical Activity. Arguing for: Claire LeBlanc and Laura Passalent, and against: Arthur Bookman and Marie Clements-Baker. Topics including rheumatoid arthritis, systemic lupus erythematosus, systemic sclerosis, Sjögren syndrome, psoriatic arthritis, spondyloarthritis, vasculitis, osteoarthritis, fibromyalgia, and their respective diagnoses, treatments, and outcomes are reflected in the abstracts, which we are pleased to publish in this issue of The Journal of Rheumatology.
第76届加拿大风湿病学会年会于2022年2月2-5日举行。该计划包括原创研究报告、专题讨论会、颁奖和讲座。会议的亮点包括以下2022年获奖者:杰出风湿病学家John G. Hanly和Lori B. Tucker;杰出的教师教育家斯蒂芬·亚伦;新兴调查员，杰西卡·威迪菲尔德;学员Maher Banjari获得Ian Watson SLE研究最佳摘要奖;实习生Molly Dushnicky获得菲尔罗森临床或流行病学研究最佳摘要奖;风湿病内科住院医师文琪最佳摘要;实习生Omar Cruz Correa的基础科学研究最佳摘要;最佳摘要:研究生实习生Holly Philpott;《风湿病学优质护理倡议》最佳摘要，Michael Zeeman;最佳医科学生摘要:萨米尔·马格迪·伊斯坎德尔;最佳大学生摘要:丹尼尔·奥乌卡;风湿病学研究生实习生Jennifer Lee获最佳摘要奖;青年教师最佳研究摘要Nancy Maltez;切尔西·德科斯特青年教师儿科研究最佳摘要;脊椎关节炎研究最佳摘要，Vanessa Ocampo;实践反思奖，金奖，贝利戴克。讲座及其他活动包括:Grace Wright主题演讲:《走向公平:每个人都在为多元化的公平铺平道路吗?》Tuhina Neogi的最新技术讲座:风湿性疾病的疼痛;邓禄普-多特里奇讲座:血管炎:我们在过去50年里学到了什么?以及大辩论:风湿病医疗保健提供者是否有责任开处方并监测身体活动。支持:克莱尔·勒布朗和劳拉·帕萨伦特，反对:亚瑟·布克曼和玛丽·克莱门茨-贝克。主题包括类风湿关节炎、系统性红斑狼疮、系统性硬化症、Sjögren综合征、银屑病关节炎、脊椎关节炎、血管炎、骨关节炎、纤维肌痛，以及它们各自的诊断、治疗和结果都反映在摘要中，我们很高兴地将其发表在本期的《风湿病学杂志》上。
{"title":"Canadian Rheumatology Association Annual Meeting, February 2–5, 2022","authors":"","doi":"10.3899/jrheum.220297","DOIUrl":"https://doi.org/10.3899/jrheum.220297","url":null,"abstract":"The 76th Annual Meeting of the Canadian Rheumatology Association was held virtually on February 2–5, 2022. The program consisted of presentations covering original research, symposia, awards, and lectures. Highlights of the meeting include the following 2022 Award Winners: Distinguished Rheumatologist, John G. Hanly and Lori B. Tucker; Distinguished Teacher-Educator, Stephen Aaron; Emerging Investigator, Jessica Widdifield; Ian Watson Award for the Best Abstract on SLE Research by a Trainee, Maher Banjari; Phil Rosen Award for the Best Abstract on Clinical or Epidemiology Research by a Trainee, Molly Dushnicky; Best Abstract by a Rheumatology Resident, Wen Qi; Best Abstract on Basic Science Research by a Trainee, Omar Cruz Correa; Best Abstract by a Post-Graduate Research Trainee, Holly Philpott; Best Abstract on Quality Care Initiatives in Rheumatology, Michael Zeeman; Best Abstract by a Medical Student, Samir Magdy Iskander; Best Abstract by an Undergraduate Student, Daniel Onwuka; Best Abstract by a Rheumatology Post-Graduate Research Trainee, Jennifer Lee; Best Abstract on Research by Young Faculty, Nancy Maltez; Best Abstract on Pediatric Research by Young Faculty, Chelsea DeCoste; Best Abstract on Spondyloarthritis Research, Vanessa Ocampo; Practice Reflection Award, Gold, Bailey Dyck. Lectures and other events included: Keynote Lecture by Grace Wright: Towards Equity: Is Everyone in the Rheum Paving the Path to Equity with Diversity?; State of the Art Lecture by Tuhina Neogi: Pain Across the Spectrum of Rheumatic Diseases; Dunlop-Dottridge Lecture by Simon Carette: Vasculitis: What Have We Learned in the Past 50 Years?; and the Great Debate: Be it Resolved that the Rheumatology Healthcare Provider Is Responsible for Prescribing and Monitoring Physical Activity. Arguing for: Claire LeBlanc and Laura Passalent, and against: Arthur Bookman and Marie Clements-Baker. Topics including rheumatoid arthritis, systemic lupus erythematosus, systemic sclerosis, Sjögren syndrome, psoriatic arthritis, spondyloarthritis, vasculitis, osteoarthritis, fibromyalgia, and their respective diagnoses, treatments, and outcomes are reflected in the abstracts, which we are pleased to publish in this issue of The Journal of Rheumatology.","PeriodicalId":35278,"journal":{"name":"The Journal of rheumatology. Supplement","volume":"53 1","pages":"751 - 847"},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"82702235","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Karl Gisslander, L. Dahlin, Rona M. Smith, D. Jayne, D. O’Donovan, A. Mohammad
Objective The diagnostic yield of sural nerve biopsy (SNB) in vasculitis is uncertain. Our aim was to document relevant characteristics of patients undergoing SNB in the investigation of vasculitis; determine the diagnostic yield; relate positive biopsy findings to patient demographic, laboratory, and clinical variables; and to calculate the rate of surgical complications. Methods Patients with suspected vasculitis that underwent SNB as part of diagnostic evaluation at academic medical centers in Sweden and the United Kingdom were identified by searching local pathology databases and clinic registers. A structured review of medical case records and pathology reports was conducted. Histological findings were categorized as definite, probable, or no vasculitis in accordance with the 2015 Brighton Collaboration reinterpretation and update of the Peripheral Nerve Society guidelines for vasculitic neuropathy. Definite and probable findings were considered positive for vasculitis. Results Ninety-one patients that underwent SNB were identified (45% female). Forty (44%) patients showed histological evidence of vasculitis: 14 definite and 26 probable. A concomitant muscle biopsy conducted in 10 patients did not contribute to the diagnostic yield. Positive antineutrophil cytoplasmic antibody test, organ involvement other than the nervous system, and a longer biopsy sample were associated with a positive biopsy. The reported surgical complication rate was 15%. Conclusion SNB of sufficient length is a useful procedure to confirm a diagnosis of vasculitis.
{"title":"The Role of Sural Nerve Biopsy in the Diagnosis of Vasculitis","authors":"Karl Gisslander, L. Dahlin, Rona M. Smith, D. Jayne, D. O’Donovan, A. Mohammad","doi":"10.3899/jrheum.211406","DOIUrl":"https://doi.org/10.3899/jrheum.211406","url":null,"abstract":"Objective The diagnostic yield of sural nerve biopsy (SNB) in vasculitis is uncertain. Our aim was to document relevant characteristics of patients undergoing SNB in the investigation of vasculitis; determine the diagnostic yield; relate positive biopsy findings to patient demographic, laboratory, and clinical variables; and to calculate the rate of surgical complications. Methods Patients with suspected vasculitis that underwent SNB as part of diagnostic evaluation at academic medical centers in Sweden and the United Kingdom were identified by searching local pathology databases and clinic registers. A structured review of medical case records and pathology reports was conducted. Histological findings were categorized as definite, probable, or no vasculitis in accordance with the 2015 Brighton Collaboration reinterpretation and update of the Peripheral Nerve Society guidelines for vasculitic neuropathy. Definite and probable findings were considered positive for vasculitis. Results Ninety-one patients that underwent SNB were identified (45% female). Forty (44%) patients showed histological evidence of vasculitis: 14 definite and 26 probable. A concomitant muscle biopsy conducted in 10 patients did not contribute to the diagnostic yield. Positive antineutrophil cytoplasmic antibody test, organ involvement other than the nervous system, and a longer biopsy sample were associated with a positive biopsy. The reported surgical complication rate was 15%. Conclusion SNB of sufficient length is a useful procedure to confirm a diagnosis of vasculitis.","PeriodicalId":35278,"journal":{"name":"The Journal of rheumatology. Supplement","volume":"3 1","pages":"1031 - 1036"},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"91132180","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-05-16DOI: 10.1101/2022.05.13.22275070
N. Oguro, N. Yajima, Y. Miyawaki, R. Yoshimi, Y. Shimojima, K. Sada, K. Hayashi, K. Shidahara, N. Sakurai, C. Hidekawa, D. Kishida, T. Ichikawa, Y. Ishikawa, N. Kurita
Objectives: Accessing the Internet has increased the gap in patient health literacy (HL), impacting patient-doctor trust. We examined how trust in physicians is affected by functional HL (the ability to read and write) and by broader concepts of HL, including communicative HL (the ability to extract information from communication to use) and critical HL (the ability to analyze and use information) among patients with systemic lupus erythematosus (SLE). Methods: This cross-sectional study enrolled 362 SLE patients at five academic centers between June 2020 and August 2021. The 14-item Functional Communicative Critical Health Literacy Scale assessed the three dimensions of HL (range: 1-4 points). Outcomes were trust in one's physician and physicians generally using the 5-item Wake Forest Physician Trust Scale (range: 0-100 points). General linear models adjusted for age, sex, education, income, disease activity, disease duration, depression, and time using the Internet. Results: Trust in one's physician increased with higher functional and communicative HL (per 1-pt increase, 3.21 [95%CI 0.61, 5.81], 5.8 [95%CI 1.96, 9.63]). Trust in physicians in general increased with higher communicative HL and decreased with higher critical HL (per 1-pt increase, 7.01 [95%CI 2.27, 11.76], -6.83 [95%CI -11.67, -1.99]). Longer Internet use was associated with both higher communicative and critical HL. Conclusions: Our findings suggest that rheumatologists can help patients build trust by encouraging dialogue about their health issues with their doctors and family members, rather than trying to improve their ability to discern health information.
{"title":"The impact of communicative and critical health literacy on trust in physicians among patients with systemic lupus erythematosus: the TRUMP2-SLE project","authors":"N. Oguro, N. Yajima, Y. Miyawaki, R. Yoshimi, Y. Shimojima, K. Sada, K. Hayashi, K. Shidahara, N. Sakurai, C. Hidekawa, D. Kishida, T. Ichikawa, Y. Ishikawa, N. Kurita","doi":"10.1101/2022.05.13.22275070","DOIUrl":"https://doi.org/10.1101/2022.05.13.22275070","url":null,"abstract":"Objectives: Accessing the Internet has increased the gap in patient health literacy (HL), impacting patient-doctor trust. We examined how trust in physicians is affected by functional HL (the ability to read and write) and by broader concepts of HL, including communicative HL (the ability to extract information from communication to use) and critical HL (the ability to analyze and use information) among patients with systemic lupus erythematosus (SLE). Methods: This cross-sectional study enrolled 362 SLE patients at five academic centers between June 2020 and August 2021. The 14-item Functional Communicative Critical Health Literacy Scale assessed the three dimensions of HL (range: 1-4 points). Outcomes were trust in one's physician and physicians generally using the 5-item Wake Forest Physician Trust Scale (range: 0-100 points). General linear models adjusted for age, sex, education, income, disease activity, disease duration, depression, and time using the Internet. Results: Trust in one's physician increased with higher functional and communicative HL (per 1-pt increase, 3.21 [95%CI 0.61, 5.81], 5.8 [95%CI 1.96, 9.63]). Trust in physicians in general increased with higher communicative HL and decreased with higher critical HL (per 1-pt increase, 7.01 [95%CI 2.27, 11.76], -6.83 [95%CI -11.67, -1.99]). Longer Internet use was associated with both higher communicative and critical HL. Conclusions: Our findings suggest that rheumatologists can help patients build trust by encouraging dialogue about their health issues with their doctors and family members, rather than trying to improve their ability to discern health information.","PeriodicalId":35278,"journal":{"name":"The Journal of rheumatology. Supplement","volume":"49 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"85647527","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
In this issue of The Journal of Rheumatology, Carluzzo et al1 explored different factors that contribute to the empowerment of individuals with arthritis. The study used data obtained from 12,560 US participants in the Live Yes! INSIGHTS program, based on sociodemographic information and patient-reported outcome measures (PROMs) about physical and mental health, emotional support, and empowerment.
{"title":"Beyond Empowerment in Rheumatology Care","authors":"A. D. de Lara, I. Peláez-Ballestas","doi":"10.3899/jrheum.220348","DOIUrl":"https://doi.org/10.3899/jrheum.220348","url":null,"abstract":"In this issue of The Journal of Rheumatology, Carluzzo et al1 explored different factors that contribute to the empowerment of individuals with arthritis. The study used data obtained from 12,560 US participants in the Live Yes! INSIGHTS program, based on sociodemographic information and patient-reported outcome measures (PROMs) about physical and mental health, emotional support, and empowerment.","PeriodicalId":35278,"journal":{"name":"The Journal of rheumatology. Supplement","volume":"12 1","pages":"864 - 866"},"PeriodicalIF":0.0,"publicationDate":"2022-05-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"82617115","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Griffiths et al recently reported that in a cohort of Australian patients with ankylosing spondylitis included in the Optimising Patient outcomes in Australian RheumatoLogy (OPAL) dataset, the median persistence (persistence defined as the time to discontinuation of treatment) was longest for patients treated with golimumab (GOL) in all lines of therapy, and shortest for those treated with etanercept (ETN).1 In drawing this conclusion, the authors have overlooked some statistical aspects relating to the reporting of time-to-event data that make it difficult to evaluate the robustness of their conclusions.
{"title":"Some Key Issues Relating to the Reporting and Interpretation of Time-to-Event Data","authors":"I. M. Schou","doi":"10.3899/jrheum.220053","DOIUrl":"https://doi.org/10.3899/jrheum.220053","url":null,"abstract":"Griffiths et al recently reported that in a cohort of Australian patients with ankylosing spondylitis included in the Optimising Patient outcomes in Australian RheumatoLogy (OPAL) dataset, the median persistence (persistence defined as the time to discontinuation of treatment) was longest for patients treated with golimumab (GOL) in all lines of therapy, and shortest for those treated with etanercept (ETN).1 In drawing this conclusion, the authors have overlooked some statistical aspects relating to the reporting of time-to-event data that make it difficult to evaluate the robustness of their conclusions.","PeriodicalId":35278,"journal":{"name":"The Journal of rheumatology. Supplement","volume":"54 1","pages":"1074 - 1074"},"PeriodicalIF":0.0,"publicationDate":"2022-05-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"78226591","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
A. Tollisen, A. Selvaag, A. Aasland, T. Ingebrigtsen, J. Sagen, A. Lerdal, B. Flatø
Objective To explore quality of life (QOL) using the individualized Patient Generated Index (PGI) in young adults who were diagnosed with juvenile idiopathic arthritis (JIA) in childhood, and to examine associations between PGI ratings and standardized health-related outcome measures. Methods Patients (N = 79, mean age 25.1 [SD 4.2] yrs, 72% female) completed the PGI and the standardized measures: Health Assessment Questionnaire–Disability Index, 12-item Short Form Health Survey (SF-12; physical and mental health-related QOL [HRQOL]), Brief Pain Inventory (pain severity and interference), 5-item Hopkins Symptom Checklist, and visual analog scale for fatigue. Information on morning stiffness, medications, and demographics was also collected. Patients were compared to 79 matched controls. Results The most frequently nominated areas of importance for patients’ personally generated QOL (assessed by PGI) were physical activity (n = 38, 48%), work/school (n = 31, 39%), fatigue (n = 29, 37%) and self-image (n = 26, 33%). Nomination of physical activity was associated with older age, morning stiffness, and more pain interference. Nomination of fatigue was associated with current use of disease-modifying antirheumatic drugs, whereas nomination of self-image was associated with polyarticular course JIA and pain interference. Nomination of work/school was not associated with other factors. Higher PGI scores (indicating better QOL) correlated positively with all SF-12 subscales except role emotional, and negatively with disability, pain severity, pain interference, and morning stiffness. Compared to controls, patients had more pain, poorer physical HRQOL, and less participation in full-time work or school. Conclusion Physical activity, work/school, fatigue, and self-image were frequently nominated areas affecting QOL in young adults with JIA. The PGI included aspects of QOL not covered in standardized measures.
{"title":"Personally Generated Quality of Life Outcomes in Adults With Juvenile Idiopathic Arthritis","authors":"A. Tollisen, A. Selvaag, A. Aasland, T. Ingebrigtsen, J. Sagen, A. Lerdal, B. Flatø","doi":"10.3899/jrheum.211245","DOIUrl":"https://doi.org/10.3899/jrheum.211245","url":null,"abstract":"Objective To explore quality of life (QOL) using the individualized Patient Generated Index (PGI) in young adults who were diagnosed with juvenile idiopathic arthritis (JIA) in childhood, and to examine associations between PGI ratings and standardized health-related outcome measures. Methods Patients (N = 79, mean age 25.1 [SD 4.2] yrs, 72% female) completed the PGI and the standardized measures: Health Assessment Questionnaire–Disability Index, 12-item Short Form Health Survey (SF-12; physical and mental health-related QOL [HRQOL]), Brief Pain Inventory (pain severity and interference), 5-item Hopkins Symptom Checklist, and visual analog scale for fatigue. Information on morning stiffness, medications, and demographics was also collected. Patients were compared to 79 matched controls. Results The most frequently nominated areas of importance for patients’ personally generated QOL (assessed by PGI) were physical activity (n = 38, 48%), work/school (n = 31, 39%), fatigue (n = 29, 37%) and self-image (n = 26, 33%). Nomination of physical activity was associated with older age, morning stiffness, and more pain interference. Nomination of fatigue was associated with current use of disease-modifying antirheumatic drugs, whereas nomination of self-image was associated with polyarticular course JIA and pain interference. Nomination of work/school was not associated with other factors. Higher PGI scores (indicating better QOL) correlated positively with all SF-12 subscales except role emotional, and negatively with disability, pain severity, pain interference, and morning stiffness. Compared to controls, patients had more pain, poorer physical HRQOL, and less participation in full-time work or school. Conclusion Physical activity, work/school, fatigue, and self-image were frequently nominated areas affecting QOL in young adults with JIA. The PGI included aspects of QOL not covered in standardized measures.","PeriodicalId":35278,"journal":{"name":"The Journal of rheumatology. Supplement","volume":"69 1","pages":"1138 - 1145"},"PeriodicalIF":0.0,"publicationDate":"2022-05-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"80283477","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Delays in diagnosis remain a major gap in the care of patients with axial spondyloarthritis (axSpA). Despite efforts to improve awareness among family physicians and nonrheumatologist specialists, the average duration from onset of symptoms to diagnosis of axSpA is approximately 8 years,1 which is one of the longest in rheumatology. Such delays in diagnosis are associated with late initiation of therapy and worse disease outcomes.
{"title":"Spondyloarthritis Among Patients With Uveitis: Can We Improve Referral Pathways?","authors":"L. Eder","doi":"10.3899/jrheum.220263","DOIUrl":"https://doi.org/10.3899/jrheum.220263","url":null,"abstract":"Delays in diagnosis remain a major gap in the care of patients with axial spondyloarthritis (axSpA). Despite efforts to improve awareness among family physicians and nonrheumatologist specialists, the average duration from onset of symptoms to diagnosis of axSpA is approximately 8 years,1 which is one of the longest in rheumatology. Such delays in diagnosis are associated with late initiation of therapy and worse disease outcomes.","PeriodicalId":35278,"journal":{"name":"The Journal of rheumatology. Supplement","volume":"70 1","pages":"659 - 660"},"PeriodicalIF":0.0,"publicationDate":"2022-05-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"84018299","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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