Elevating the Standard of Care for Patients with Axial Spondyloarthritis: 'Calls to Action' from Rheumacensus, a Multistakeholder Pan-European Initiative.

INTRODUCTION: Several barriers to optimal care in axial spondyloarthritis (axSpA) exist, which is detrimental to patient outcomes. The Rheumacensus programme aimed to identify how the standard of care (SoC) and treatment ambition for patients with axSpA could be elevated, from the unique perspective of three key stakeholders from across Europe: patients, healthcare professionals (HCPs) and payors. METHODS: Rheumacensus followed three phases: an insights-gathering workshop to identify current unmet needs in axSpA and an area of focus, a modified Delphi process to gain consensus on improvements within the agreed area of focus, and a Consensus Council (CC) meeting to generate 'Calls to Action' (CTA) to highlight the changes needed to elevate the SoC for patients with axSpA. RESULTS: The Rheumacensus CC consisted of four patient representatives, four HCPs and four payors. All 12 members completed all three Delphi e-consultations. The shared area of focus that informed the Delphi process was patient empowerment through education on the disease and treatment options available, to enable patient involvement in management and ultimately increase treatment adherence. Four key themes emerged from the Delphi process: patient empowerment, patient knowledge, patient-HCP consultations and optimal initial treatment. These themes informed 11 overarching CTA, which demonstrate the need for a multistakeholder approach to implement a paradigm shift towards patient-centred care to elevate health outcomes in patients with axSpA. CONCLUSION: Rheumacensus identified CTA to help bridge the disparities observed in axSpA care. It is now imperative for all stakeholders to take practical steps towards addressing these CTA to elevate the SoC and treatment ambition in patients with axSpA.

Axial spondyloarthritis (axSpA) is a long-term inflammatory disease involving the spine and other joints of the body as well as where tendons and ligaments attach to bone. AxSpA is associated with a significant burden to patients which can be worsened by delays in diagnosis and poor disease management. This report is about a programme called Rheumacensus which has the overall aim of improving the standard of care (SoC) for patients with axSpA. Rheumacensus brings together the points of view of three key groups involved in the care of people with axSpA: patients, payors and healthcare professionals (HCPs) from across Europe. Together, these three groups agreed to focus on patient empowerment through education on the disease and treatment options to effectively enhance treatment adherence, as a way to raise the SoC. Through a series of exercises­to agree on the current SoC and what needs to be improved­and group discussions, four themes were established which were used by the groups to help them suggest 'Calls to action' (CTA). The CTAs were ideas of how improvements could be made or what needs to be done to improve the care patients receive. The four themes were (1) patient empowerment, (2) patient knowledge, (3) patient­HCP consultation and (4) optimal initial treatment. In total, 11 CTAs were developed across these themes that provide direction and practical next steps which patients, payors and HCPs could take to drive change and make a real difference to patients by improving their care.

Treatment of axial spondyloarthritis with biologic and targeted synthetic DMARDs: British Society for Rheumatology guideline scope.

Pharmacological management has advanced considerably since the 2015 British Society for Rheumatology axial spondyloarthritis (axSpA) guideline to incorporate new classes of biologic DMARDs (bDMARDs, including biosimilars), targeted synthetic DMARDs (tsDMARDs) and treatment strategies such as drug tapering. The aim of this guideline is to provide an evidence-based update on pharmacological management of adults with axSpA (including AS and non-radiographic axSpA) using b/tsDMARDs. This guideline is aimed at health-care professionals in the UK who care directly for people with axSpA, including rheumatologists, rheumatology specialist nurses, allied health professionals, rheumatology specialty trainees and pharmacists; people living with axSpA; and other stakeholders, such as patient organizations and charities.

Poor health and functioning in patients with axial spondyloarthritis during the COVID-19 pandemic and lockdown: REUMAVID study (phase 1).

AIM: To evaluate the overall health and functioning in patients with axial spondyloarthritis (axSpA) and related factors affecting these during the COVID-19 pandemic and lockdown measures. METHODS: Data from 587 axSpA patients participating in the first phase (April-July 2020) of the REUMAVID study who completed the ASAS Health Index (ASAS-HI) were analysed. REUMAVID is a cross-sectional study that collects data through an online survey to assess the impact of the COVID-19 pandemic on patients with rheumatic and musculoskeletal diseases across seven European countries. Poor health was defined as ASAS-HI ⩾ 12. The World Health Organization Five well-being index, self-perceived health status and change in health status during COVID-19 pandemic were evaluated as secondary outcomes. Logistic regression models were used to identify the factors associated with poor health. RESULTS: According to the ASAS-HI, 147 (25.0%) patients reported poor health. Pain and moving around were the main affected categories. In addition, 14.0% reported their self-perceived health status as 'bad' or 'very bad' and 46.8% as worse than before the pandemic. In the multivariate analysis, smoking (OR = 1.98), diabetes (OR = 4.89) and taking painkillers (OR = 2.82) or corticosteroids use (OR = 2.20) were significantly associated with poor health, while engaging in physical activity (OR = 0.54) and being actively employed (OR = 0.48) were inversely associated with this. CONCLUSIONS: During the first wave of the COVID-19 pandemic, one in four axSpA patients reported poor health and functioning, while the self-perceived health status of almost half of these patients worsened. Nonsmoking, physical activity and being employed were associated with better outcomes.

Assessment of impact of the COVID-19 pandemic from the perspective of patients with rheumatic and musculoskeletal diseases in Europe: results from the REUMAVID study (phase 1).

AIM: To assess the impact of the COVID-19 pandemic on patients with rheumatic and musculoskeletal diseases (RMDs). METHODS: REUMAVID is a cross-sectional study using an online survey developed by an international multidisciplinary patient-led collaboration across seven European countries targeting unselected patients with RMDs. Healthcare access, daily activities, disease activity and function, well-being (WHO Five Well-Being Index (WHO-5)), health status, anxiety/depression (Hospital Anxiety and Depression Scale (HADS)) and access to information were evaluated. Data were collected in April-July 2020 (first phase). RESULTS: Data from the first phase included 1800 patients with 15 different RMDs (37.2% axial spondyloarthritis, 29.2% rheumatoid arthritis, 17.2% osteoarthritis and others). Mean age was 53, 80% female and 49% had undertaken university studies. During the beginning of the pandemic, 58.4% had their rheumatology appointment cancelled and 45.6% reported not having received any information relating to the possible impact of SARS-CoV-2 infection in their RMDs, with the main source being patient organisations (27.6%).Regarding habits, 24.6% increased smoking, 18.2% raised their alcohol consumption, and 45.6% were unable to continue exercising. Self-reported disease activity was high (5.3±2.7) and 75.6% reported elevated pain. Half the patients (49.0%) reported poor well-being (WHO-5) and 46.6% that their health had changed for the worse during lockdown. According to HADS, 57.3% were at risk of anxiety and 45.9% of depression. CONCLUSION: Throughout the first wave of the COVID-19 pandemic, patients with RMDs have experienced disruption in access to healthcare services, poor lifestyle habits and negative effects on their overall health, well-being and mental health. Furthermore, information on COVID-19 has not reached patients appropriately.

Impact of COVID-19 containment measures on patients with rheumatic and musculoskeletal disease in the UK and Europe: the REUMAVID study (phase1).

OBJECTIVES: The aim was to compare the impact of the first wave of the coronavirus disease 2019 (COVID-19) pandemic and lockdown measures on patients with rheumatic and musculoskeletal diseases (RMDs) in the UK and other European countries (OEC). METHODS: REUMAVID was an online cross-sectional survey of seven European countries. The data collected included the following: demographics, lifestyle, employment, access to health-care services, disease-specific characteristics, the World Health Organization five well-being index (WHO-5), hospital anxiety and depression scale (HADS), visual analogue scale (VAS) disease activity, and the perceived acceptable symptom scale. RESULTS: One thousand eight hundred responses were received between April and July 2020 [UK, n = 558 (31.0%); OEC, n = 1242 (69.0%)]. UK patients were more likely to be older [mean (S.d.): UK 58.5 (13.4) years; OEC 50.0 (12.2) years], university educated [UK n = 302 (54.1%); OEC n = 572 (46.1%), quit smoking [UK n = 92 (59.4%); OEC n = 65 (16.2%)] and continue exercise [UK, n = 216 (49.2%); OEC, n = 228 (33.1%)], although, conversely, alcohol consumption increased [UK n = 99 (36.3%); OEC n = 98 (12.1%)]. UK patients felt informed about COVID-19 (UK 72.7%, OEC 57.4%) and kept their planned rheumatology [UK n = 87 (51.2%); OEC n = 213 (38.6%)] and/or general practice appointments [UK n = 87 (76.3%); OEC n = 310 (53.9%)]. Almost half the patients with RMDs reported a decline in health and well-being, although this was less common in UK patients [UK n = 214 (38.4%), OEC n = 618 (50.2%)], who reported better perceived acceptable symptom scale, VAS pain and HADS scores, but worse WHO-5 scores. CONCLUSIONS: UK RMD patients performed better in the physical and mental health domains tested, possibly owing to a less restrictive lockdown and better health-care access. These findings have implications for health-care services globally in planning patient care after the COVID-19 pandemic.

Did a quality improvement collaborative make stroke care better? A cluster randomized trial.

BACKGROUND: Stroke can result in death and long-term disability. Fast and high-quality care can reduce the impact of stroke, but UK national audit data has demonstrated variability in compliance with recommended processes of care. Though quality improvement collaboratives (QICs) are widely used, whether a QIC could improve reliability of stroke care was unknown. METHODS: Twenty-four NHS hospitals in the Northwest of England were randomly allocated to participate either in Stroke 90:10, a QIC based on the Breakthrough Series (BTS) model, or to a control group giving normal care. The QIC focused on nine processes of quality care for stroke already used in the national stroke audit. The nine processes were grouped into two distinct care bundles: one relating to early hours care and one relating to rehabilitation following stroke. Using an interrupted time series design and difference-in-difference analysis, we aimed to determine whether hospitals participating in the QIC improved more than the control group on bundle compliance. RESULTS: Data were available from nine interventions (3,533 patients) and nine control hospitals (3,059 patients). Hospitals in the QIC showed a modest improvement from baseline in the odds of average compliance equivalent to a relative improvement of 10.9% (95% CI 1.3%, 20.6%) in the Early Hours Bundle and 11.2% (95% CI 1.4%, 21.5%) in the Rehabilitation Bundle. Secondary analysis suggested that some specific processes were more sensitive to an intervention effect. CONCLUSIONS: Some aspects of stroke care improved during the QIC, but the effects of the QIC were modest and further improvement is needed. The extent to which a BTS QIC can improve quality of stroke care remains uncertain. Some aspects of care may respond better to collaboratives than others. TRIAL REGISTRATION: ISRCTN13893902.

Effects of quality improvement in health facilities and community mobilization through women's groups on maternal, neonatal and perinatal mortality in three districts of Malawi: MaiKhanda, a cluster randomized controlled effectiveness trial.

BACKGROUND: Maternal, perinatal and neonatal mortality remains high in low-income countries. We evaluated community and facility-based interventions to reduce deaths in three districts of Malawi. METHODS: We evaluated a rural participatory women's group community intervention (CI) and a quality improvement intervention at health centres (FI) via a two-by-two factorial cluster randomized controlled trial. Consenting pregnant women were followed-up to 2 months after birth using key informants. Primary outcomes were maternal, perinatal and neonatal mortality. Clusters were health centre catchment areas assigned using stratified computer-generated randomization. Following exclusions, including non-birthing facilities, 61 clusters were analysed: control (17 clusters, 4912 births), FI (15, 5335), CI (15, 5080) and FI + CI (14, 5249). This trial was registered as International Standard Randomised Controlled Trial [ISRCTN18073903]. Outcomes for 14,576 and 20,576 births were recorded during baseline (June 2007-September 2008) and intervention (October 2008-December 2010) periods. RESULTS: For control, FI, CI and FI + CI clusters neonatal mortality rates were 34.0, 28.3, 29.9 and 27.0 neonatal deaths per 1000 live births and perinatal mortality rates were 56.2, 55.1, 48.0 and 48.4 per 1000 births, during the intervention period. Adjusting for clustering and stratification, the neonatal mortality rate was 22% lower in FI + CI than control clusters (OR = 0.78, 95% CI 0.60-1.01), and the perinatal mortality rate was 16% lower in CI clusters (OR = 0.84, 95% CI 0.72-0.97). We did not observe any intervention effects on maternal mortality. CONCLUSIONS: Despite implementation problems, a combined community and facility approach using participatory women's groups and quality improvement at health centres reduced newborn mortality in rural Malawi.

Do Personal Medical Services contracts improve quality of care? A multi-method evaluation.

OBJECTIVES: To assess whether the new contractual arrangements of first-wave Personal Medical Services (PMS) practices in England improved their quality of care, compared with changes in care provided in a control sample of General Medical Services (GMS) practices. METHODS: Controlled 'before' (at or near 1 April 1998) and 'after' (at or near 31 March 2001) quantitative observational study in a sample of 23 PMS and 23 GMS practices. Quantitative data focused on access, chronic disease management, mental health care, primary care of older people, costs and patient evaluation using the General Practice Assessment Survey. Case studies were also undertaken in all PMS pilots, involving interviews with general practitioners, nurses, practice managers and Health Authority and Primary Care Group/Trust managers, documentation review, and analysis of site-specific data. RESULTS: There were improvements in quality of care in PMS sites in all areas of care evaluated, but improvements in care over and above those found in GMS sites (the 'PMS effect') were only statistically significant for angina care (P = 0.05) and elderly care (P = 0.04). Teamwork, shared culture, clear objectives and leadership were important catalysts for quality improvement in PMS sites. Improvements in PMS practices came at additional financial cost. There were concurrent improvements in GMS practices. No PMS site succeeded in meeting its aims without successfully introducing effective leadership and management, and changing relationships within the practice (e.g. equalising power between nurses and doctors). CONCLUSIONS: Small but steady improvements were observed in English primary care. PMS contracts facilitated quality improvements in specific areas over and above these broad improvements (the 'PMS effect') during the study period. New contractual arrangements for health care can be used to improve quality of care. However, the mechanisms that resulted in quality gains, while facilitated by the new contractual arrangements, were not specific or unique to the PMS experiment. Factors such as effective management, clear objectives and flexible professional relationships within practices are likely to be important in determining whether new contractual arrangements result in improved outcomes. The context within which care and services are provided is as important for quality innovations as specific contractual arrangements.

Theories of change: what works in improving health in mid-life?

The need to promote healthy active ageing in order to offset the impact of an ageing population on national resources and ensure a high quality of life in older age is well recognized. In 2001, the English Department of Health established a national pre-retirement health initiative involving the development of eight pilot projects. A national evaluation using a 'theories of change' approach embedded within a realistic evaluation design was commissioned to draw out the lessons from across the projects. In this article we describe the methods used to identify and test out the projects' theories of change, and the results obtained. The theories of change identified revolved mainly around engaging clients and empowering them to take action through the provision of information. Two projects also saw providing opportunities for social interaction as a means to engaging and empowering clients. Theory testing indicated that health improvement services could be effectively targeted at people in mid-life and that service settings and style played an important part in engagement. In particular contexts, combining free health checks with financial advice was a significant motivator for engagement, as was perceived health need in two deprived areas. Gains in knowledge were also important for empowerment in some contexts, but validation of existing knowledge could be more important in others. Opportunities to engage in social activities were a potent mechanism for empowerment amongst women living in two deprived areas. Further work is required to test these conclusions in other contexts, and to ascertain how people from minority ethnic groups and men, particularly those outside the labour market, can be engaged in health improvement initiatives.

Platelet count assessment from peripheral blood smear (PBS).

OBJECTIVE: To visually count platelets in a peripheral blood smear and compare with an automated machine platelet count. METHODS: Thirty-five peripheral blood smears were made from blood specimens counted on an automated blood cell machine: twenty-three thrombocytopenic specimens, 1 with high platelet count and 11 with normal counts. Ten and 25 high-power fields were microscopically averaged and then multiplied by 15,000 and 20,000 to arrive at a platelet count in 1,000 per microliter. Comparisons between visual and machine counts were drawn. RESULTS: There was fair concordance in 27 specimens. In three specimens underestimation was found, overestimation in five. A 15,000 multiplier gave slightly better results than 20,000. Average in 10 high-power fields was as good as 25. Abnormal counts could be assessed as well as normal. CONCLUSION: Average in 10 high-power field on a blood film microscopically and multiplying by 15,000 gives a platelet count reasonably close to automated machine counts in thousands per microliter.

Is the quality of care in general medical practice improving? Results of a longitudinal observational study.

BACKGROUND: The demand for increased accountability within health care has led to a myriad of government initiatives in the United Kingdom, with the aim of improving care, setting minimum standards, and addressing poor performance. AIM: To assess the quality of care in English general practice in the year 2001 compared with 1998, in terms of access, interpersonal care, and clinical care (chronic disease management, elderly care, and mental health care). DESIGN OF STUDY: Observational study in a purposive sample of general practices in England. SETTING: Twenty-three general practices in England--eight in North Thames, seven in the North West, and eight in the South West. RESULTS: Outcome measures were: quality of chronic disease management (angina, adult asthma and type 2 diabetes from practice questionnaires and medical record review), elderly care and mental health care (from practice questionnaires), access to care, continuity of care and interpersonal care (from practice and patient questionnaires) and costs (mean change in practice budget between 1998 and 2001). There were significant improvements in quality of care in terms of organisational access to services (P = 0.016), practice organisation of chronic disease management (P = 0.039), and the quality of angina care (P = 0.003). There were no significant changes in quality scores for mental health care, elderly care, access and interpersonal care. The mean practice budget rose by 3.4% between 1998 and 2001 (adjusted for inflation). CONCLUSION: These findings provide evidence of improvements in some aspects of the quality of care, achieved at modest cost. This was achieved during a time when the National Health Service was undergoing a series of reforms. However, primary care in England is characterised by variation in care, with significant improvements still possible.