Viewpoint: Nurses educating patients about drugs.

Educating patients about the drugs they take is essential for them to take them safely and effectively. This education is now commonly given by nurses as part of the huge expansion in the nurse specialist role. However, training for this role has not kept pace with practice. Nurses have expressed variable confidence in this role and expressed a wish for more formal training. Current practice often puts the information rather than the patient at the centre of the consultation with the nurse dominating the conversation. Cues to address the patient agenda are commonly missed. An animated patient who interrupts is probably not having their educational needs met. Education of the professionals around how to perform this task in an optimal way is necessary and should result in better efficacy and safety of the drugs. This could be achieved by incorporating features of Shared Decision Making and the Calgary-Cambridge consultation techniques into training and the consultation. Personalisation by attention to patient preferences, language and health literacy is essential.

Keeping patient and public partnership at the heart of medical technology development during Covid-19: examples of adaptive practice.

NIHR (National Institute for Health Research) Devices for Dignity MedTech Cooperative (D4D) and NIHR Children and Young People MedTech Cooperative (CYPMedTech) have established track records in keeping patient and public involvement (PPI) at the core of medical technology development, evaluation and implementation. The 2020 global COVID-19 pandemic presented significant challenges to maintaining this crucial focus. In this paper we describe prior successful methodologies and share examples of the adaptations made in order to continue to engage with patients and the public throughout the pandemic and beyond. We reflect on learning gained from these experiences, and new areas of scope and focus relating to broadening the reach of engagement and representation, along with associated resource requirements and impact metrics.

Patient Empowerment: Apni Jung (Our Fight) against Rheumatoid Arthritis for South Asian Population.

Covid-19 has affected many populations in the UK, and ethnic minority communities in particular. People from ethnic minority communities living with long-term chronic diseases have shown to be less engaging with self-management and report having poor medication adherence. The main reason to this problem is the way information is delivered to non-English speaking patients. This editorial discusses an innovation to over this barriers in rheumatology practice.

'All hands-on deck', working together to develop UK standards for public involvement in research.

BACKGROUND: Public involvement in research is an established part of the research process in the UK, however there remain questions about what good public involvement in research looks and feels like. Until now public involvement practitioners, researchers and members of the public have looked for answers in examples shared across networks, published case studies, guidance and research articles. Pulling these strands together, the UK Standards for Public Involvement provides six statements (standards) about public involvement in research. They were produced by a partnership of organisations from Scotland, Northern Ireland, Wales and England with contributions from involvement practitioners, public partners, researchers and research funders. MAIN BODY: Each standard has reflective questions, which are designed to encourage standard users to use approaches and behaviours that improve involvement, over time. The standards are designed to be used as a practical tool, and reflect the agreed hallmarks of good public involvement in research for example, flexibility in approaches used, shared learning, and mutual respect.The standards development process is described from the initial idea and scoping, via the appraisal of existing standard sets and integration of values and principles in public involvement in research. The collaborative writing process of and consultation on the draft standard set is described, together with what changed as a result of feedback. The initiation of a year-long testing programme with forty participating research organisations, the experiential feedback and the resulting changes to the standards is summarised. CONCLUSION: This commentary paper describes, in some detail, a process to develop a set of six standards for public involvement in research in the UK. Producing a complex, national public involvement initiative is not without its challenges, and in supplementary material partnership members reflect on and share their experiences of standards development. The next phase of integration and implementation is explored with concluding comments from those that tested and helped improve the standards.

Development and validation of a bi-lingual interactive tool to educate people about osteomalacia.

Osteomalacia is a condition where bone mineralisation is impaired by lack of vitamin D. It more commonly affects darker skinned individuals in the UK, especially if they wear occlusive clothing. Lifestyle changes and Vitamin D supplementation are recommended for those people most at risk through these factors, but such advice is not commonly followed. This indicates an educational need for information on osteomalacia and its treatment. Using a previously developed Mind-Map on osteomalacia, a layered and interactive" PowerPoint" style presentation was developed, using hyperlinks. The "basic" layer was translated into Urdu and validated by Urdu speaking professionals. The translation was accurate and meaningful and the tool was well received by representatives of the community. The tool was used to educate a group of 10 community leaders from the Urdu community in Stourbridge, UK. Knowledge about osteomalacia was tested in these people, before and after the education, and increased from an average of 14 to 25 points (p < 0.05). Qualitative feedback gained was very positive. Conclusion: An interactive educational tool for Osteomalacia was developed and translated into Urdu. Use of the tool resulted in increased knowledge about osteomalacia.

Health-care professionals' perceptions of interacting with patients of South Asian origin attending early inflammatory arthritis clinics.

OBJECTIVE: The aim was to explore the perceptions of rheumatology health-care professionals (HCPs) of interacting with patients of South Asian origin attending early inflammatory arthritis clinics. METHODS: We used face-to-face semi-structured interviews, designed in partnership with a clinician partner, to interview 10 HCPs involved in the running of early inflammatory arthritis clinics across seven centres in the UK. Data were recorded, transcribed by an independent company and analysed using inductive thematic analysis. RESULTS: Three emerging themes were identified that characterized consulting experiences of HCPs: varied approaches were used in early inflammatory arthritis clinic; the challenges for rheumatology HCPs in managing and delivering information to patients of South Asian origin in early inflammatory arthritis clinics; and moving towards good practice, the views on managing future patients of South Asian origin in early inflammatory arthritis clinics. Overall, HCPs found that they required additional skills to support the engagement and management for patients of South Asian origin living with inflammatory arthritis. The HCPs felt that they were less effective in addressing self-management issues for this patient group, and they found it difficult to determine adherence to medication. In such consultations, HCPs perceived that their own limitation of inadequate training contributed towards poor consultations. CONCLUSION: For the first time, our data demonstrate that the management of patients of South Asian origin in early inflammatory arthritis clinics is under-served. To address this, HCPs have identified training needs to improve knowledge and skills in engaging with and supporting patients of South Asian origin. These findings provide a good direction for future research.

Experiences of South Asian patients in early inflammatory arthritis clinic: a qualitative interview study.

OBJECTIVE: The aim was to explore how UK South Asian patients living with RA interact with health care professionals and experience receiving health information in an early inflammatory arthritis clinic. METHODS: A semi-structured interview schedule, designed in conjunction with a patient partner, was used for face-to-face interviews. South Asian participants with RA were recruited from Central Manchester University Hospitals National Health Service Foundation Trust. Data were recorded and transcribed by an independent company. Data were analysed using inductive thematic analysis. RESULTS: Fifteen participants were interviewed. Three predominant themes emerged around participants' experiences and interaction with health care professionals in early inflammatory arthritis clinic. First, 'the personal experiences of RA and cultural link to early inflammatory arthritis clinic', where participants described the impact of RA as individuals and their altered roles within their cultural setting. Second, 'experiences of interacting and receiving information in the early inflammatory arthritis clinic', where participants described their limited engagement with health care professionals and the quality of information discussed in the clinic. Third, 'views on future content for early inflammatory arthritis clinics', where participants highlighted new innovative ideas to build on current practice. CONCLUSION: We believe this to be the first study to generate insight into the experiences of South Asian patients of interacting with health care professionals while attending an early inflammatory arthritis clinic. Policy directives aimed at improving access to services and delivery of information for ethnic minority groups in early inflammatory arthritis clinics should include consideration of the different roles of cultures. Professionals should be cognizant of the factors that drive health inequalities and focus on improving service delivery.

Development of Preliminary Remission Criteria for Gout Using Delphi and 1000Minds Consensus Exercises.

OBJECTIVE: To establish consensus for potential remission criteria to use in clinical trials of gout. METHODS: Experts (n = 88) in gout from multiple countries were invited to participate in a web-based questionnaire study. Three rounds of Delphi consensus exercises were conducted using SurveyMonkey, followed by a discrete-choice experiment using 1000Minds software. The exercises focused on identifying domains, definitions for each domain, and the timeframe over which remission should be defined. RESULTS: There were 49 respondents (56% response) to the initial survey, with subsequent response rates ranging from 57% to 90%. Consensus was reached for the inclusion of serum urate (98% agreement), flares (96%), tophi (92%), pain (83%), and patient global assessment of disease activity (93%) as measurement domains in remission criteria. Consensus was also reached for domain definitions, including serum urate (<0.36 mm), pain (<2 on a 10-point scale), and patient global assessment (<2 on a 10-point scale), all of which should be measured at least twice over a set time interval. Consensus was not achieved in the Delphi exercise for the timeframe for remission, with equal responses for 6 months (51%) and 1 year (49%). In the discrete-choice experiment, there was a preference towards 12 months as a timeframe for remission. CONCLUSION: These consensus exercises have identified domains and provisional definitions for gout remission criteria. Based on the results of these exercises, preliminary remission criteria are proposed with domains of serum urate, acute flares, tophus, pain, and patient global assessment. These preliminary criteria now require testing in clinical data sets.

Comparative evaluation of cardiovascular outcomes in patients with osteoarthritis and rheumatoid arthritis on recommended doses of nonsteroidal anti-inflammatory drugs.

AIMS AND OBJECTIVES: We conducted an analysis to explore whether the cardiovascular outcomes associated with nonsteroidal anti-inflammatory drugs (NSAIDs), when used in licensed doses by patients with osteoarthritis or rheumatoid arthritis, was class or compound dependent. METHODS: Using the Ovid technology search engine, we conducted a search of the literature for relevant studies published between 1995 and 2011. We also retrieved further studies following manual searches. The primary endpoint was major vascular events and the secondary endpoints were stroke, hypertension and congestive heart failure. A total of 19 studies were analysed. Studies conducted in the osteoarthritis and rheumatoid arthritis patients' population that reported on cardiovascular events were included in the analysis. The analysis was conducted using the software Review Manager 5.1 and Cochrane methodology. RESULTS: Using the primary endpoint of major vascular events (MVE) and a prespecified cutoff point of 1.30, diclofenac (versus 1 comparator) and rofecoxib (versus 2 comparators) had increased risk for MVE [odds ratio (OR) >1.30]. Using the same criteria, diclofenac (versus 1 comparator) had an increased risk of myocardial infarction (MI). Although celecoxib had a slightly increased risk for MI (OR 1.33, versus 1 comparator), the confidence interval included 1 and was not significant. For the secondary endpoints, etoricoxib and rofecoxib were significantly worse off for HT (versus 1 comparator each) and naproxen was significantly worse off for stroke (versus 1 comparator). Although ibuprofen was worse off for HT (versus 1 comparator) the increased risk was not significant. CONCLUSION: From the analysis conducted, it appears that the risk for cardiovascular events in arthritis patients on licensed doses of NSAIDs varies considerably and is likely to depend on the individual compound.

Patient involvement in outcome measures for psoriatic arthritis.

Psoriatic arthritis (PsA) is a heterogeneous inflammatory arthritis with a varied clinical phenotype. There has been considerable international collaboration over recent years to develop and prioritise appropriate disease domains and outcome measures to capture all aspects of this complex disease. It has been recognised that patient-reported measures and physician assessments are complementary and, when used together, allow an improved reflection of disease burden. Taking this concept one step further, the experience in rheumatoid arthritis has demonstrated benefits of incorporating the patient perspective in the development of outcome measures. We report a systematic review demonstrating (1) that there has been little incorporation of the patient perspective in the development of outcome measures and domains in PsA, (2) the proceedings from the preliminary patient involvement in outcome measures for PsA (PIOMPSA) meetings, and (3) a proposed roadmap for improving patient involvement.