Arthritis isn’t a big deal… …until you get it. Ask 4 million Canadians. Report from the Summit on Standards for Arthritis Prevention and Care November 1 – 2, 2005 Ottawa, Ontario, Canada Prepared on February 22, 2006 C ONTENTS EXECUTIVE SUMMARY I SECTION 1 - BACKGROUND 1 1.1 The Summit on Standards for Arthritis Prevention and Care Planning process 2 SECTION 2 - KEY ISSUES 4 2.1 Arthritis awareness 5 2.2 Arthritis prevention 6 2.3 Arthritis management 7 SECTION 3 - THE NINE TOPICS FOR STANDARDS DEVELOPMENT 9 3.1 Arthritis awareness 10 3.2 Arthritis prevention 10 3.3 Arthritis management 10 SECTION 4 - THE SUMMIT ON STANDARDS FOR ARTHRITIS PREVENTION AND CARE NOVEMBER 1-3 2005 12 SECTION 5 - THE STANDARDS FOR ARTHRITIS PREVENTION AND CARE 14 5.1 Definitive standards 15 SECTION 6 - ACTION PLAN FOR STANDARDS IMPLEMENTATION 17 SECTION 7 - OUTSTANDING RESEARCH QUESTIONS 28 7.1 Arthritis awareness at the government, consumer / patient and public levels 29 7.2 Medical / health professional education 29 7.3 Participation 30 7.4 Physical activity 30 7.5 Injury prevention 31 7.6 Management and models of care 31 7.6.1 Access to diagnosis / manpower and models of care for individuals of all ages with arthritis 31 7.6.2 Access to medications 32 7.6.3 Access to surgery 33 SECTION 8 - NEXT STEPS 34 APPENDIX I Supporting Evidence 38 APPENDIX II Participants and Teams 43 APPENDIX III Support 50 APPENDIX IV Agenda - THE SUMMIT ON STANDARDS FOR ARTHRITIS PREVENTION AND CARE November 1-3 2005 51 REFERENCES 57 Executive Summary Arthritis is everywhere. Arthritis destroys lives – young and old alike. Four million Canadians have arthritis today. Arthritis knows no age limits. Children and adults of all ages get arthritis. Arthritis comprises over 100 different conditions and is the leading cause of deformity and long-term disability in Canada. It is one of the major reasons why people over 65 years of age visit their family physician. The burden of illness in the population due to arthritis is increasing due to increased longevity, reduced physical activity, increased obesity and lack of access to timely health care to mitigate disability. Arthritis is costly to society. The inability to work and/or live independently and lost opportunities have a devastating impact on the lives of four million Canadians. Strategies must be developed to reduce the burden of arthritis in our population. Unless these strategies are developed immediately, it is anticipated arthritis will place an even greater stress on the health care system over time and will continue to destroy lives. The impact of arthritis on Canada’s Aboriginal communities Arthritis is up to two-and-a-half times as common in the Aboriginal community living off reserve (Public Health Agency of Canada, 2003) as in non-Aboriginal Canadians. Overall, 27% of Aboriginal people living off reserve have arthritis compared with 16% of the general Canadian population. However, arthritis receives little attention as a significant health issue within the Aboriginal community. Cost is a significant barrier for people with arthritis to receive appropriate medications and other treatments. Canadians with arthritis from coast-to-coast do not have consistent or equitable access to the best evidence-based treatments available today. Where you live can be more important in determining treatment than how sick you are. Provincial, territorial and private drug plans vary considerably in their coverage of prescription medications for arthritis, in particular those medications that are the most costly to patients. There are also regional variations in availability of chronic illness self-management strategies, rehabilitation services and surgery. I Canadians with arthritis make up the lion’s share of those on joint replacement wait lists. Over 90% of people who undergo hip or knee replacement surgery have arthritis – fewer than 10% undergo this procedure for other conditions, such as hip fracture. Of those who have hip or knee replacement surgery for arthritis, approximately 95% have osteoarthritis (Hawker 1998, Katz, J. N. 2001). Wait times for joint replacement surgery in Canada have been identified as unacceptable. According to the 2002 Fraser Institute Waiting Times Survey (Esmail & Walker 2002), waits for consultation with orthopaedic surgeons, and waits from decision to proceed with joint replacement to time of surgery exceeded all other waiting times in Canada (median wait from General Practitioner to surgeon 12.7 weeks; median wait from decision to surgery 19.3 weeks). The number of patients who wait more than a year for surgery has grown exponentially, and continues to grow. In 2001, approximately 20% of patients waited more than a year for a first hip replacement, and almost 30% waited this long for a first knee replacement. Hip and knee replacement surgeries help people return to work and get on with their lives: strategies to reduce these unacceptable wait times are urgently needed. Several approaches are currently being evaluated across Canada. Although the focus of attention has been on hip and knee joint replacement surgery, attention is also needed to the prolonged wait times for other orthopaedic surgeries people with arthritis frequently require. The arthritis community is united. In 2002, arthritis community stakeholders came together to form the Alliance for the Canadian Arthritis Program (ACAP) to work towards changing the inequities that exist across Canada in arthritis prevention and care. More than 20 organizations make up ACAP. While each group continues its own specialized work, ACAP provides a central focus for national arthritis-related initiatives. Importantly, the forming of ACAP means the many voices of the arthritis community are united and deliver to government one consistent set of key messages. II The Summit on Standards for Arthritis Prevention and Care makes health care policy history. In 2005, ACAP determined its focus would be to take action on the lack of arthritis prevention strategies and the widely prevailing disparities in arthritis diagnosis, treatment, and care for Canadians with arthritis by convening a Summit on Standards for Arthritis Prevention and Care. The Summit marked the first time in history an entire disease community united to gather research evidence and establish acceptable, achievable standards to improve arthritis prevention and care across Canada. A key objective of the Summit was to build on work done to date in the arthritis community to improve awareness, prevention and care for people living with the disease, including strengthening the Arthritis Bill of Rights developed in 2001 (The Arthritis Society 2001). The Summit was the culmination of “Rock This Joint 2005 – Bringing Together Arthritis Knowledge and Action,” an ACAP initiative that saw eight days of high- level arthritis meetings in Ottawa from October 27 to November 3, 2005. The arthritis community develops actionable standards for arthritis prevention and care. The Summit generated consensus across the entire spectrum of the arthritis community: consensus on standards that need to be implemented now; standards that need further refinement and development; areas where more research is needed before moving forward, and action plans for each. Most importantly, the Summit generated consensus, leading to the point where the many voices of the arthritis community (consumers, professionals and stakeholders of all kinds) are agreed on the steps that must follow. This report lays out the work accomplished. Already, the Summit organizers are hard at work on the next steps. These include: identifying from the volumes of work completed the “early wins” that can be implemented immediately; and working with all the partners, including people with arthritis, government, health care providers, health researchers, policy makers and industry, to improve the lives of Canadians living with arthritis. III Arthritis Partners: Dr. Elizabeth Badley, Arthritis Community Research & Evaluation Unit Ms. Angelique Berg, Canadian Orthopaedic Foundation Mr. Emidio DeCarolis, Pfizer Ms. Louise Desjardins, Institute of Musculoskeletal Health and Arthritis, Canadian Institutes of Health Research (CIHR) Mr. Jean-Francois Dicaire, Abbott Laboratories Limited Ms. Anne Dooley, Canadian Arthritis Patient Alliance Dr. Ciaran Duffy, Canadian Paediatric Rheumatology Association Dr. John Esdaile, Arthritis Research Centre of Canada Mr. John Fleming, The Arthritis Society Dr. Cy Frank, Institute of Musculoskeletal Health and Arthritis, CIHR Dr. Gillian Hawker, Rheumatologist / Researcher – Member at Large Ms. Catherine Hofstetter, Canadian Arthritis Patient Alliance Ms. Cheryl Koehn, Arthritis Consumer Experts Mr. Jean Legare, Patient Partners in Arthritis Ms. Sydney Linekar, Arthritis Health Professions Association Ms. Jennifer Lothian, Amgen Canada Inc. Ms. Anne Lyddiatt, Patient Partners in Arthritis Dr. Dianne Mosher, Rheumatologist – Member at Large Ms. Erynn Peters, Institute of Musculoskeletal Health and Arthritis, CIHR Dr. Robin Poole, Canadian Arthritis Network Ms. Ann Qualman, Canadian Arthritis Patient Alliance Mr. John Riley, Canadian Arthritis Network Mr. Michel Therriault, Merck Frosst Dr. Peter Tugwell, Cochrane Collaboration Mr. Gordon Whitehead, Consumer Advisory Board Ms. Hazel Wood, Bone and Joint Decade Dr. Michel Zummer, Canadian Rheumatology Association IV Arthritis Standards for Prevention and Care: 1. Every Canadian must be aware of arthritis. 2. Every Canadian with arthritis must have access to accurate information and education on arthritis that meet a defined set of criteria and are appropriate to their age and stage of disease. 3. Participation in social, leisure, education, community and work activities must be an integral measure used to evaluate outcomes by health professionals, educators, policy makers and researchers. 4. Every Canadian must be informed about the importance of achieving and maintaining a healthy body weight, and actively encouraged to engage in physical activity to prevent the onset and worsening of arthritis. 5. All relevant health professionals must be able to perform a valid, standardized, age appropriate musculoskeletal screening assessment. 6. Inflammatory arthritis must be identified and treated appropriately within four weeks of seeing a health care professional. 7. Health care professionals must recognize osteoarthritis as a significant health issue and treat it according to current treatment guidelines (Jordan 2003). 8. Bone mineral density testing must be offered free to all women > 65 years, all men and women with low trauma fracture after age 40, and every Canadian of any age with risk factors for osteoporosis, according to current prevention and treatment guidelines (Brown 2002). 9. Every Canadian with arthritis must have timely and equal access to appropriate medications. 10. Post-approval evaluation of arthritis medications must be part of drug approval. 11. Patient preferences, including risk-benefit trade-offs, must be incorporated into regulatory decision making and prescribing of arthritis medications. V 12. Every Canadian requiring joint surgery must wait no longer than six months from the time the decision to have surgery is made by the patient and physician. Provisional Standards Requiring Additional Research 13. To prevent arthritis, every Canadian must understand and implement prevention strategies to reduce sport and recreation injuries. 14. Every Canadian with arthritis must have timely access to appropriate integrated health care, appropriate to their age and disease stage. 15. Every Canadian with arthritis will be enabled to participate in life roles that are important to them. Summit Co-Chairs Dr. John Esdaile Professor of Medicine, University of British Columbia Tel: (604) 871-4563 Email: [email protected] Dr. Gillian Hawker Associate Professor of Medicine, University of Toronto Tel: (416) 323-7722 Email: [email protected] Cheryl L. Koehn President, Arthritis Consumer Experts Tel: (604) 974-1355 Email: [email protected] Dr. Dianne Mosher Professor of Medicine, Dalhousie University Tel: (902) 422-1170 Email: [email protected] Website for the Alliance for the Canadian Arthritis Program Available at: www.arthritisalliance.ca VI S 1 ECTION B ACKGROUND