Methods for living guidelines: early guidance based on practical experience. Paper 2: consumer engagement in living guidelines.

OBJECTIVES: To describe and reflect on the consumer engagement approaches used in five living guidelines from the perspectives of consumers (i.e., patients, carers, the public, and their representatives) and guideline developers. STUDY DESIGN AND SETTING: In a descriptive report, we used a template to capture engagement approaches and the experiences of consumers and guideline developers in living guidelines in Australia and the United Kingdom. Responses were summarized using descriptive synthesis. RESULTS: One guideline used a Consumer Panel, three included two to three consumers in the guideline development group, and one did both. Much of our experience was common to all guidelines (e.g., consumers felt welcomed but that their role initially lacked clarity). We identified six challenges and opportunities specific to living guidelines: managing the flow of work; managing engagement in online environments; managing membership of the panel; facilitating more flexibility, variety and depth in engagement; recruiting for specific skills-although these can be built over time; developing living processes to improve; and adapting consumer engagement together. CONCLUSION: Consumer engagement in living guidelines should follow established principles of consumer engagement in guidelines. Conceiving the engagement as living, underpinned by a living process evaluation, allows the approach to be developed with consumers over time.

Equity Considerations in COVID-19 Vaccination Studies of Individuals With Autoimmune Inflammatory Rheumatic Diseases.

OBJECTIVE: We sought to examine the extent to which populations experiencing inequities were considered in studies of COVID-19 vaccination in individuals with autoimmune inflammatory rheumatic diseases (AIRDs). METHODS: We included all studies (n = 19) from an ongoing Cochrane living systematic review on COVID-19 vaccination in patients with AIRDs. We used the PROGRESS-Plus framework (place of residence, race/ethnicity, occupation, gender/sex, religion, education, socioeconomic status, and social capital, plus: age, multimorbidity, and health literacy) to identify factors that stratify health outcomes. We assessed equity considerations in relation to differences in COVID-19 baseline risk, eligibility criteria, description of participant characteristics and attrition, controlling for confounding factors, subgroup analyses, and applicability of findings. RESULTS: All 19 studies were cohort studies that followed individuals with AIRDs after vaccination. Three studies (16%) described differences in baseline risk for COVID-19 across age. Two studies (11%) defined eligibility criteria based on occupation and age. All 19 studies described participant age and sex. Twelve studies (67%) controlled for age and/or sex as confounders. Eight studies (47%) conducted subgroup analyses across at least 1 PROGRESS-Plus factor, most commonly age. Ten studies (53%) interpreted applicability in relation to at least 1 PROGRESS-Plus factor, most commonly age (47%), then ethnicity (16%), sex (16%), and multimorbidity (11%). CONCLUSION: Sex and age were the most frequently considered PROGRESS-Plus factors in studies of COVID-19 vaccination in individuals with AIRDs. The generalizability of evidence to populations experiencing inequities is uncertain. Future COVID-19 vaccine studies should report participant characteristics in more detail to inform guideline recommendations.

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.

Methods for living guidelines: early guidance based on practical experience. Paper 1: Introduction.

OBJECTIVES: To introduce methods for living guidelines based on practical experiences by the Australian Living Evidence Consortium (ALEC), the National Institute of Health and Care Excellence (NICE), and the Infectious Diseases Society of America (IDSA), with methodological support from the US Grading of Recommendations, Assessment, Development and Evaluations (GRADE) Network. STUDY DESIGN AND SETTING: Members of ALEC, NICE, and the US GRADE Network, convened a working group to share experiences of the methods used to develop living guidelines and outline the key differences between traditional and living guidelines methods. RESULTS: The guidance includes the following steps: 1) deciding if the guideline is a priority for a living approach, 2) preparing for living guideline development, 3) literature surveillance and frequency of searching, 4) assessment and synthesis of the evidence, 5) publication and dissemination, and 6) transitioning recommendations out of living mode. CONCLUSION: This paper introduces methods for living guidelines and provides examples of the similarities and differences in approach across multiple organizations conducting living guidelines. It also introduces a series of papers exploring methods for living guidelines based on our practical experiences, including consumer involvement, selecting and prioritizing questions, search decisions, and methods decisions.

Methods for living guidelines: early guidance based on practical experience. Paper 3: selecting and prioritizing questions for living guidelines.

OBJECTIVES: This article is part of a series on methods for living guidelines, consolidating practical experiences from developing living guidelines. It focuses on methods for identification, selection, and prioritization of clinical questions for a living approach to guideline development. STUDY DESIGN AND SETTING: Members of the Australian Living Evidence Consortium, the National Institute of Health and Care Excellence and the US Grading of Recommendations, Assessment, Development and Evaluations Network, convened a working group. All members have expertize and practical experience in the development of living guidelines. We collated methods, documents on prioritization from each organization's living guidelines, conducted interviews and held working group discussions. We consolidated these to form best practice principles which were then edited and agreed on by the working group members. RESULTS: We developed best practice principles for (1) identification, (2) selection, and (3) prioritization, of questions for a living approach to guideline development. Several different strategies for undertaking prioritizing questions are explored. CONCLUSION: The article provides guidance for prioritizing questions in living guidelines. Subsequent articles in this series explore consumer involvement, search decisions, and methods decisions that are appropriate for questions with different priority levels.

COVID‐19 vaccination for people with autoimmune inflammatory rheumatic diseases on immunomodulatory therapies

Objectives This is a protocol for a Cochrane Review (intervention). The objectives are as follows: To synthesise the evidence for benefits and harms of SARS‐CoV‐2 vaccination for people with autoimmune rheumatic diseases on immunomodulatory therapies.

Patient satisfaction and acceptability with telehealth at specialist medical outpatient clinics during the COVID-19 pandemic in Australia.

BACKGROUND: Outpatient clinics were shifted rapidly to telehealth in Australia during the Coronavirus disease 19 (COVID-19) pandemic, drastically altering patient care and experience. AIMS: To investigate patient satisfaction and acceptability of telehealth consultations during the COVID-19 pandemic. METHODS: Prospective observation study conducted in two hospital rheumatology outpatient departments (OPD) undertaking telehealth consultations during COVID-19. A modified version of a validated telehealth evaluation survey was posted to all patients attending the telehealth OPD rheumatology clinics, including balanced 5-point Likert scales and free-text responses. Cluster analysis was applied to the Likert-scale questions, alongside thematic analysis of free-text responses. RESULTS: There were 128 respondents (29% response rate), of which 69.5% were women and the majority (87.5%) was aged 50 years or older. All telehealth consultations were conducted by telephone. Nearly one-fifth of patients indicated consistent dissatisfaction with telehealth across the range of questions. These patients were older, reported lower educational qualifications and lower health literacy scores and lacked access to the Internet. While many patients found this mode of consultation to be convenient, patients expressed concerns regarding absence of physical examination. A recurrent theme was a desire for a mixed-model clinic in the future, with flexibility of having both telehealth and face-to-face consultations. CONCLUSIONS: This study offers unique insights into patients' experiences with telehealth, which until the current global pandemic, has been an uncommon mode of consultation delivery in urban areas. This study suggests when defining the place of telehealth in future healthcare delivery, patient perspective and careful patient selection will be key. Disease progression, language and cognitive ability, health literacy, technology access and patient and clinician preference are important considerations when deciding how effectively to embed and integrate telehealth into consultations.