Developing a National Audit for Rheumatoid and Early Inflammatory Arthritis Ian Rowe

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Developing a National Audit for Rheumatoid and Early Inflammatory Arthritis Ian Rowe Chair Clinical Affairs Committee, BSR

Outline The British Society for Rheumatology Challenges in improving patient outcomes for RA in UK What is the BSR Biologics Register? Approach to the HQIP National Audit in RA Opportunities

British Society for Rheumatology Membership organisation Guidelines and Education Covers England, Wales, Scotland and Northern Ireland Members include consultant rheumatologists, trainees, allied health professionals and GPs Closer working with British Health Professionals in Rheumatology (BHPR) Annual Conference over 2,000 clinicians E learning pilot 2012 Rheumatology International Journal HQIP national audit of RA 2012 Challenges Rheumatology conditions seen as outpatient activity rather than ambulatory care and Long Terms Conditions Large variation in how services are delivered Little to inform service specifications BSR Biologics Register Biologics register managed by BSR, over 25,000 patients Ankylosing Spondylitis register commenced 2012

Defining Rheumatology A multidisciplinary branch of medicine that deals with the investigation, diagnosis and management of patients with arthritis and other musculoskeletal conditions. This incorporates over 200 disorders affecting joints, bones, muscles and soft tissues, including inflammatory arthritis and other systemic autoimmune disorders, vasculitis, soft tissue conditions, spinal pain and metabolic bone disease. A significant number of musculoskeletal conditions also affect other organ systems. Rheumatology is in the midst of a period of exponential growth in knowledge of the mechanisms of rheumatologic and auto-immune disease, knowledge which is transforming and advancing our treatment options. There is untapped potential for Quality improvement through addressing variation in treatment and care; Innovation through implementing best practice; Prevention of unnecessary disability and improvements in Productivity. British Society for Rheumatology Dec 2011.

RA-Variation in Quality and Outcomes Innovation and Productivity: Early effective treatment needed; RA/IA represent a major health problem; 1 million people (England); cost 8 billion annually (UK); delays in treatment can result in a more aggressive disease; earlier treatment may produce cost savings. Quality Improvement: Major Variations in Care National: Different levels of Care and variation in services i) There is existing wide variation in treatment and outcomes; e.g. only 10% of patients are put onto DMARDs within 3 months of symptom onset in spite of NICE guidelines. ii) Only 63% of patients in acute trusts provided annual review for RA patients to monitor disease progression and emergence of co-morbidities (NAO, 2009; NICE, 2009) International : Poorer Access: Biologic Treatment and Waiting times Europe unsuccessful treatment with a single DMARD Disease activity Score 3.2 (mild disease) Spain waits 2 weeks from referral, maximum Germany 12 weeks U.K. unsuccessful treatment with TWO DMARD Disease activity Score 5.1 (severe disease) U.K. standard set 3 months from symptom onset, not met Meeting European guidelines Marks in the LSE report in 2012 England was given a 4/10 the lowest mark in joint placing with Poland and Slovenia higher marks were awarded to Germany (8/10) and Sweden (9/10). Source: A Common Disease with Uncommon Treatment,European Guideline Variations and, Access to Innovative Therapies for Rheumatoid Arthritis LSE June 2102

BSR Biologics Register RA Largest European biologics register for patients with RA Established 2001 Monitoring long term safety profile Now >25,000 patients Cohorts of patients recruited Six different biologic drugs Research database: infection risk; comparison between drugs Established as part of NICE approval for biologics Funded by pharmaceutical companies Paper moving to electronic data capture

Potential for other opportunities and use; potential for links to other research databases e.g. CPRD; INBANK Policy makers/ Regulators Patients Pharma Biologics Register Researchers Commissioners Clinicians/ Specialist nurses

ARUK- plans for INBANK A national research infrastructure to facilitate coordinated musculoskeletal research, including i) a searchable catalogue of extant studies and ii) a prospective research database - recruitment to bespoke studies - biological samples - linkage to national datasets

DANBIO Courtesy of Merete Hetland

BSR and Healthcare Quality Improvement Partnership (HQIP) Audit HQIP invited bids 2011 BSR bid National Audit of Rheumatoid and Early Inflammatory Arthritis accepted 2012

National Institute for Health and Clinical Excellence (NICE) RA Guidelines 2009 DMARDs within 3 months of symptom onset Measure CRP and key components of disease activity (DAS) monthly until disease controlled Annual review for disease assessment, co-morbidities, MDT, effect of RA on person s life

3 Key Audit Objectives Rapid control of joint inflammation: Audit data on new patients for 1 month in rheumatology clinics with follow up data over 3 months. Key outcomes include patient recorded disease severity, satisfaction with access to service, advice and education (NICE). Repeat annually. Cardiovascular risk factors: Audit at RA annual review (NICE) in collaboration with Primary Care. One month annually. Ability to work: generate work related outcomes and audit with above.

Healthcare Quality Improvement Partnership(HQIP) National Audit Rheumatoid Arthritis July 2012 Specification workshop for proposers Autumn 2012 Tender released for provider bidding Spring 2013 Contract let for national audit Spring Summer 2013 Development and design of implementati on Themed workshops, stakeholder engagement, testing and exercising 2013 Implementat ion of national audit and data analysis National Audit for 3 years potential to extend for 5 years

Minimum Core Dataset to enable future developments collect data once Data direct from the clinical setting Disease monitoring - adverse events - lifestyle factors - CV risk factors Collect outcomes important to patients Inform patient decision making

Improved quality and consistency of rheumatology services - Challenges and opportunities Clinical engagement for data collection- user friendly IT Patient engagement Continuous data collection Clinical- routine practice, audit (local and national), revalidation Discussion with devolved nations Research (BSRBR, other databases)