Mortality estimates and excess mortality in rheumatoid arthritis.

OBJECTIVES: To determine long-term (20 year) survival in RA patients enrolled in the Australian Rheumatology Association Database (ARAD). METHODS: ARAD patients with RA and data linkage consent who were diagnosed from 1995 onwards were included. Death data were obtained through linkage to the Australian National Death Index. Results were compared with age-, gender- and calendar year-matched Australian population mortality rates. Analysis included both the standardized mortality ratio (SMR) and relative survival models. Restricted mean survival time (RMST) at 20 years was calculated as a measure of life lost. Cause-specific SMRs (CS-SMRs) were estimated for International Classification of Diseases, Tenth Revision cause of death classifications. RESULTS: A total of 1895 RA patients were included; 74% were female, baseline median age 50 years (interquartile range 41-58), with 204 deaths. There was no increase in mortality over the first 10 years of follow up, but at 20 years the SMR was 1.49 (95% CI 1.30, 1.71) and the relative survival was 94% (95% CI 91, 97). The difference between observed (18.41 years) and expected (18.68 years) RMST was 4 months. Respiratory conditions were an important underlying cause of death in RA, primarily attributable to pneumonia [CS-SMR 5.2 (95% CI 2.3, 10.3)] and interstitial lung disease [CS-SMR 7.6 (95% CI 3.0, 14.7)], however, coronary heart disease [CS-SMR 0.82 (95% CI 0.42, 1.4)] and neoplasms [CS-SMR 1.2 (95% CI 0.89, 1.5)] were not. CONCLUSION: Mortality risk in this RA cohort accrues over time and is moderately increased at 20 years of follow-up. Respiratory diseases may have supplanted cardiovascular diseases as a major contributor to this mortality gap.

Management of chronic rheumatic diseases in women 18-45 years of age in Asia Pacific: insights from patient and clinician surveys.

OBJECTIVE: Perspectives of women aged 18-45 years with chronic rheumatic diseases (CRD), and clinicians, in the Asia-Pacific (APAC) region are reported. METHODS: Online surveys were completed by women, pregnant in the past 2-5 years, with moderate to severe rheumatoid arthritis (RA), psoriatic arthritis (PsA), axial spondyloarthritis (axSpA), and rheumatologists, obstetricians, orthopaedic surgeons who medically manage CRDs. RESULTS: Among 210 (RA 122, PsA 48, axSpA 40) patients, 52% (n = 109/210) delayed their decision to have children, most commonly due to concerns of passing on disease to offspring. 33% (n = 70/210) discussed family planning with a healthcare professional at diagnosis. Patients most often initiated discussions. 94% (n = 193/205) stopped treatment around pregnancy due to fear of fetal harm. 66% (n = 139/210) of patients felt they did not receive all relevant information on the impact of CRDs and treatment on pregnancy. Among 335 clinicians who participated, 82% (n = 143/174) of rheumatologists, 86% (n = 72/84) of obstetricians and 43% (n = 33/77) of orthopaedic surgeons agreed good disease control during pregnancy was their primary goal. 69% (n = 120/174) of rheumatologists were 'very comfortable' with prescribing tumour necrosis factor inhibitors (TNFi) for women aged 18-45 years. Comfort levels generally decreased with the onset of family planning. More obstetricians and orthopaedic surgeons supported avoiding TNFi during pregnancy than rheumatologists (40% [n = 34/84]/38% [n = 29/77] versus 16% [n = 28/174]). Access to more TNFi safety data during pregnancy was considered paramount for increasing clinician comfort. CONCLUSIONS: Patients and physicians need current information and multidisciplinary discussions for improved management of CRD in women in APAC.

Patterns of biologic and targeted-synthetic disease-modifying antirheumatic drug use in rheumatoid arthritis in Australia.

OBJECTIVE: The aim of this study was to describe treatment patterns in RA, including the frequency and reasons for switching or stopping biologic and targeted synthetic DMARDs (b/tsDMARDs). METHODS: The reasons for switching or stopping b/tsDMARDs were extracted from the Australian Rheumatology Association Database (ARAD) from 2003 to 2018 for RA participants. Switching patterns for each b/tsDMARD and time on first-, second- and third-line b/tsDMARDs were evaluated using Sankey diagrams and survival methods. RESULTS: A total of 2839 participants were included in the analysis. The first-line b/tsDMARDs were etanercept (n = 1414), adalimumab (n = 1024), infliximab (n = 155), golimumab (n = 98), abatacept (n = 66), certolizumab (n = 38), tocilizumab (n = 21) and tofacitinib (n = 23). Of those starting first-, second- and third-line biologic therapy, 24.0%, 31.8% and 24.4% switched to another b/tsDMARD within 12 months, respectively. Inefficacy or adverse effects were the most common reasons for stopping therapy, irrespective of line of treatment. Compared with first-line etanercept, participants were more likely to stop adalimumab [Hazard ratio (HR) 1.16, 95% CI: 1.04, 1.29] and infliximab (HR 1.77, 95% CI: 1.46, 2.16). No differences were seen for other b/tsDMARDs. For second-line therapies compared with etanercept, the risk of stopping was lower for tocilizumab (HR 0.41, 95% CI: 0.25, 0.70), rituximab (HR 0.51, 95% CI: 0.30, 0.85) and tofacitinib (HR 0.29, 95% CI: 0.15, 0.57). Participants taking rituximab, tocilizumab and tofacitinib were also less likely to stop third-line therapy in comparison with participants taking etanercept. CONCLUSIONS: Switching between b/tsDMARDs was common among ARAD participants with RA, most commonly due to inefficacy or adverse effects. Durability of exposure and reasons for switching varied between b/tsDMARDs.

Evaluation of patient satisfaction for telehealth (telephone and video) in rheumatology outpatients during COVID-19 pandemic.

BACKGROUND: Telehealth in rheumatology has been a topic of interest for many years, but the COVID-19 pandemic placed it in the forefront. AIMS: To evaluate patient perception of rheumatology telehealth and determine predictive factors for future telehealth acceptability. METHODS: A questionnaire containing 30 questions was sent to public and private rheumatology patients who attended telehealth appointments between April and May 2020. The questionnaire aimed to obtain information on baseline demographics, traditional appointment details, telehealth appointment details and appointment satisfaction using a 5-point Likert scale. Descriptive statistical analysis was conducted. RESULTS: The questionnaire was sent to 1452 patients, of whom 494 (34%) patients responded. More than 70% of responses indicated overall satisfaction in specialist care through telehealth, and 88.7% perceived this suitable during a pandemic. Less than 50% of patients were agreeable for future telehealth either through telephone or video conference after the pandemic is over. Higher odds ratio for future telehealth acceptability was associated with visual impairment, perceived cost-effectiveness and previous time lost at work for a face-to-face appointment. CONCLUSION: During the unprecedented time of the pandemic, telehealth appointments (telephone/video) assisted in providing ongoing patient care remotely, with high level of satisfaction seen in this study. The patient's experience and perception of telehealth was strongly influenced by financial incentives, and certain subgroups of patients were more accepting for future telehealth appointments. Nevertheless, low level of future telehealth acceptability also highlighted the potential dissatisfaction among patients in telehealth compared with the traditional appointments.

Management of blood products: Nursing knowledge and practices at an academic hospital.

OBJECTIVE: The purpose of this study was to determine the knowledge and practice of nurses at an academic hospital regarding the handling of red blood cells (RBCs) and platelets. METHODS: A descriptive study was performed using a paper-based questionnaire. Nurses from 12 wards where these products are frequently transfused were purposefully selected to participate. RESULTS: Ninety-nine questionnaires were analysed. While 78.9 % respondents reported that their knowledge regarding the handling of RBCs and platelets was adequate, 81.7 % still stated that they would like more training on this subject. Almost half (45.2 %) reported that the time of arrival of RBCs and platelets on the ward was not charted, while 25.5 % indicated that they warm all these blood products before transfusion. About eighty percent (80.8 %) did not know where to store platelets in the ward and 37.4 % knew the average duration of a platelet transfusion. The term, blood on returnable basis was correctly interpreted by 6.1 % of respondents. CONCLUSION: Gaps exist in the knowledge and practice of nursing staff regarding the correct handling of RBCs and platelets, specifically discarding, storage and warming of these products. Addressing such gaps would improve patient care and contribute towards patient blood management.

The knowledge of transfusion and related practices among doctors at Universitas Academic Complex, Bloemfontein, South Africa.

OBJECTIVES: To determine the knowledge of transfusion and related practices among doctors working at Universitas Academic Complex (UAC), Bloemfontein, South Africa. We aimed to describe training history, transfusion knowledge and reported haemovigilance reporting habits. METHODS: A cross-sectional descriptive study was performed using an anonymous questionnaire distributed at departmental meetings. The study population included doctors working in adult disciplines that frequently transfuse blood from the UAC. Ethics approval was obtained from the University of the Free State, Health Sciences Research Ethics Committee. Permission to conduct the study was obtained from the Free State Department of Health. Results were summarised by frequencies and percentages. RESULTS: Questionnaires of 152 respondents were analysed. Most of the respondents (31.5 %) were registrars and medical officers with less than 5 years' experience, followed by specialists (19.9 %). Although prescribing habits varied, 43.3 % of respondents prescribe blood at least weekly. Almost a third (29.9 %) of respondents had never received any transfusion training. A haemoglobin-based transfusion trigger is used by 76.2 % of respondents. Almost 80 % of respondents reported using a single unit of blood followed by clinical reassessment before ordering a second unit. Cost of laboratory investigations and lack of human resources were the main reported obstacles to adequately investigating anaemia. Forty percent of respondents involved with the care of patients who suffered a transfusion related adverse event reported the event to the blood service. CONCLUSION: At the (UAC), where blood is frequently transfused, we note infrequent training, poor knowledge of some basic transfusion principles and poor haemovigilance reporting.

A Practical Approach to the Use of Conventional Synthetic, Biologic and Targeted Synthetic Disease Modifying Anti-Rheumatic Drugs for the Treatment of Inflammatory Arthritis in Patients with a History of Malignancy.

PURPOSE OF REVIEW: Conventional synthetic disease modifying anti-rheumatic drugs (csDMARDs) have been used in the treatment of inflammatory arthritis (IA) for many years. More recently, biologic (bDMARDs) and targeted synthetic (tsDMARDs) DMARDs have further improved treatment. Due to increased patient longevity and effective oncology treatment, rheumatologists often encounter patients with IA and previous malignancy. The immunosuppressive effect of DMARDs causes concern regarding impaired tumour surveillance with a potential increased risk of malignancy. We reviewed the literature regarding the risk of malignancy in patients on cs-/b-/tsDMARDS and sought to provide practical advice regarding use of these drugs in patients with previous malignancy. RECENT FINDINGS: Data from randomised controlled trials is limited as patients with pre-existing malignancy are often excluded. Reassuringly, an increasing range of "real world" data from various national b/tsDMARD registries has not provided a convincing signal that these drugs increase tumour recurrence. Nevertheless, awareness of, and adherence to, national screening guidelines for malignancy is important. Given the improvement in quality of life achieved with these novel and well-tolerated therapeutic agents, the benefit/risk profile remains overwhelmingly favourable in most patients.

EVOLVE: The Australian Rheumatology Association's 'top five' list of investigations and interventions doctors and patients should question.

BACKGROUND: The EVOLVE (evaluating evidence, enhancing efficiencies) initiative aims to drive safer, higher-quality patient care through identifying and reducing low-value practices. AIMS: To determine the Australian Rheumatology Association's (ARA) 'top five' list of low-value practices. METHODS: A working group comprising 19 rheumatologists and three trainees compiled a preliminary list. Items were retained if there was strong evidence of low value and there was high or increasing clinical use and/or increasing cost. All ARA members (356 rheumatologists and 72 trainees) were invited to indicate their 'top five' list from a list of 12-items through SurveyMonkey in December 2015 (reminder February 2016). RESULTS: A total of 179 rheumatologists (50.3%) and 19 trainees (26.4%) responded. The top five list (percentage of rheumatologists, including item in their top five list) was: Do not perform arthroscopy with lavage and/or debridement for symptomatic osteoarthritis of the knee nor partial meniscectomy for a degenerate meniscal tear (73.2%); Do not order anti-nuclear antibody (ANA) testing without symptoms and/or signs suggestive of a systemic rheumatic disease (56.4%); Do not undertake imaging for low back pain for patients without indications of an underlying serious condition (50.8%); Do not use ultrasound guidance to perform injections into the subacromial space as it provides no additional benefit in comparison to landmark-guided injection (50.3%) and Do not order anti-double-stranded DNA antibodies in ANA negative patients unless the clinical suspicion of systemic lupus erythematosus remains high (45.3%). CONCLUSIONS: This list is intended to increase awareness among rheumatologists, other clinicians and patients about commonly used low-value practices that should be questioned.

A practical approach to vaccination of patients with autoimmune inflammatory rheumatic diseases in Australia.

Autoimmune inflammatory rheumatic diseases (AIIRD), such as rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis are often complicated by infection, which results in significant morbidity and mortality. The increased risk of infection is probably due to a combination of immunosuppressive effects of the AIIRD, comorbidities and the use of immunosuppressive conventional synthetic disease-modifying anti-rheumatic drugs (DMARDs) and more recently, targeted synthetic DMARDs and biologic DMARDs that block specific pro-inflammatory enzymes, cytokines or cell types. The use of these various DMARDs has revolutionised the treatment of AIIRD. This has led to a marked improvement in quality of life for AIIRD patients, who often now travel for prolonged periods. Many infections are preventable with vaccination. However, as protective immune responses induced by vaccination may be impaired by immunosuppression, where possible, vaccination may need to be performed prior to initiation of immunosuppression. Vaccination status should also be reviewed when planning overseas travel. Limited data regarding vaccine efficacy in patients with AIIRD make prescriptive guidelines difficult. However, a vaccination history should be part of the initial work-up in all AIIRD patients. Those caring for AIIRD patients should regularly consider vaccination to prevent infection within the practicalities of routine clinical practice.

Exchange transfusion as a life-saving intervention in three patients with different haematological malignancies with severe hyperleukocytosis where leukapheresis was not available.

Hyperleukocytosis is a rare but potentially serious complication of haematological malignancies. It is usually treated with rehydration, prevention of tumour lysis syndrome and the administration of cytotoxic therapy. Leukapheresis may be life-saving in emergency cases. In this article we describe how, in a resource-limited setting where leukapheresis was not available, manual exchange transfusion was utilised as a life-saving intervention in three patients with different haematological malignancies complicated by hyperleukocytosis. Further we outline the procedure that was carried out and evaluated possible complications associated with this rarely used practice.

WITHDRAWN: Exchange transfusion as a life-saving intervention in three patients with different haematological malignancies with severe hyperleukocytosis where leukapheresis was not available.

The Publisher regrets that this article is an accidental duplication of an article that has already been published, 10.1016/j.transci.2013.09.003. The duplicate article has therefore been withdrawn.

Vaccination Rates, Perceptions, and Information Sources Used by People With Inflammatory Arthritis.

OBJECTIVE: To determine vaccination rates, perceptions, and information sources in people with inflammatory arthritis. METHODS: Participants enrolled in the Australian Rheumatology Association Database were invited to participate in an online questionnaire, conducted in January 2020, prior to the COVID-19 pandemic. Included questions were about vaccination history, modified World Health Organization Vaccination Hesitancy Scale, views of the information sources consulted, the Beliefs About Medicines Questionnaire, education, and the Single-Item Health Literacy Screener. RESULTS: Response rate was 994 of 1498 (66%). The median age of participants was 62 years, with 67% female. Self-reported adherence was 83% for the influenza vaccine. Participants generally expressed positive vaccination views, particularly regarding safety, efficacy, and access. However, only 43% knew which vaccines were recommended for them. Vaccine hesitancy was primarily attributable to uncertainty and a perceived lack of information about which vaccines were recommended. Participants consulted multiple vaccination information sources (median 3, interquartile range 2-7). General practitioners (89%) and rheumatologists (76%) were the most frequently used information sources and were most likely to yield positive views. Negative views of vaccination were most often from internet chatrooms, social media, and mainstream media. Factors of younger age, male gender, and having more concerns about the harms and overuse of medicines in general were associated with lower adherence and greater uncertainty about vaccinations, whereas education and self-reported literacy were not. CONCLUSION: Participants with inflammatory arthritis generally held positive views about vaccination, although there was considerable uncertainty as to which vaccinations were recommended for them. This study highlights the need for improved consumer information about vaccination recommendations for people with inflammatory arthritis.