The Arthritis Community Research & Evaluation Unit (ACREU) is carrying out a comprehensive research program of applied health services research concerned with the delivery of care to people with chronic disabling disorders using arthritis as a model. ACREU applies a mission-oriented approach to research as opposed to being hypothesis driven. Since 1991 ACREU has been a leader in documenting the nature of the impact of arthritis, and needs and gaps related to existing services.
In recognition of the need for a comprehensive strategy for the control of arthritis and related conditions, ACREU’s research themes over the years have focused on people with arthritis and their families, health education/promotion, primary care, rehabilitation and community support services, specialist and hospital services, and health policy and planning. ACREU conducts research in all of these health care areas, except medication use, and is particularly interested in the linkages between the components. Key areas are outlined below together with current projects in partnership with the Ontario Ministry of Health and Long Term Care.
Studies of the individual in his or her environment increase our understanding of the strategies people with arthritis and their families use, including accessing and utilizing health services. Such studies also highlight the role of psychological factors such as mastery, coping, and physical environment (e.g., assistive devices, adaptations).
The Causes and Consequences of Pain and Fatigue in Osteoarthritis – New Emerging Team (NET) research program aims to find out how the common symptoms of OA, including pain, fatigue, mood and sleep quality impact the person living with OA physically, psychologically and socially.
In Tooling Up for Early Osteoarthritis: Measuring What Matters, ACREU is taking the lead in studies directed to exploring the symptoms and disruptions of early OA and to developing a measure of social participation. Specifically, the research will develop tools to detect OA at an earlier stage than it is currently diagnosed in order to make early intervention possible.
The Measuring What Matters: Participation in Everyday Life study consists of consumers, researchers, and clinicians with a range of expertise, sharing an interest in the broader impact of OA on the lives of people living with this condition. The impact of osteoarthritis (OA) on many areas of life has been poorly recognized in the past. These areas include participating in work; home and social life; sports and other leisure activities.
ACREU has established long-term, population-based studies on changes in employment in people with arthritis and independence in older people with arthritis. ACREU’s current study on employment points to the important roles of home environment and transportation. The Arthritis and Employment study is looking at the long-term impact of chronic physical illness and disability on employment in adults with arthritis. Its aim is to help people with chronic conditions to better manage their health and work demands so as to remain employed.
Deficiencies in primary care management of arthritis are well documented in the literature. Research in this theme includes an evaluation of “Patients Partners” for teaching, now implemented throughout Canada. ACREU also completed a demonstration project for enhanced primary care management of arthritis (Community Health Centre [CHC] pilot intervention) using evidence-based guidelines. This project showed an increased level of appropriate care. From this research a national initiative, Getting a Grip on Arthritis, evolved.
ACREU has made many contributions to promoting and supporting the development and evaluation of educational programs to help enhance the capacity of health professionals to provide appropriate care to people with arthritis. This is based on work on primary care management of arthritis.
One such project is Getting a Grip on Arthritis: A National Primary Health Care Community Initiative. ACREU is carrying out the evaluation and providing support for the national implementation by The Arthritis Society of this primary health care educational program for the management of arthritis. This project was initially developed as a demonstration project by the ACREU team in collaboration with the Ontario Ministry of Health and Long Term Care.
There is mounting evidence of the benefit of non-pharmacological modalities, including physical therapy, exercise and coping skills training. ACREU research has included a randomized control trial (RCT) of home physiotherapy, which showed sustained benefits, and the development of questionnaires to assess patient knowledge and stiffness. ACREU was part of the development of the Client Centred Rehabilitation Questionnaire (CCRQ), a major component of the Client Perspectives of Rehabilitation Services Questionnaire (CPRSQ). The CCRQ is being used throughout Ontario for clients discharged from inpatient rehabilitation services.
ACREU continues to gather and synthesize data related to community-based services. In the mid-1990s ACREU completed a key informant survey documenting the range and type of community-based programs for people with arthritis (primarily osteoarthritis). From this research it was concluded that such programs are of a patchwork nature and many lack formal evaluation.
ACREU has a current study on The Structure of Helping Networks for Community Dwelling Seniors with Arthritis. This research study has two main objectives:
Among the recent achievements in ACREU-associated rehabilitation research is the Hospital Report 2005: Rehabilitation, in collaboration with University of Toronto, Ontario Hospital Association, and the Ontario Ministry of Health and Long-Term Care. Work of this research collaborative included:
Last year ACREU initiated a new study on inpatient rehabilitation called Client-centred Rehabilitation: Four Case Studies of Inpatient Rehabilitation. The purpose of this study is to evaluate client-centred rehabilitation for adults with long-term disabilities needing inpatient rehabilitation.
Another project, Rehabilitation Outcomes: The Right Measures at the Right Time and Outcome Measurement: The Importance of Time evaluates people’s perceived importance of different types of outcomes (based on the International Classification of Functioning disability framework) changes over the course of recovery from total hip or knee arthroplasty.
Predictors of Disability Following Revision Knee Arthroplasty is a project that looks at patient, disease and surgical factors that predict patient outcome following revision knee arthroplasty.
ACREU also has completed research on specialist and hospital services. In a cohort study ACREU completed surveys of the population aged 55 years and over in East York and Oxford County to determine factors affecting access to joint replacement surgery and to learn more about the nature of arthritis in the population. This is an ongoing longitudinal study of the population with significant hip and knee arthritis.
ACREU has also done pioneering analyses of OHIP and other health service databases to study primary and specialist care for specific types of arthritis. ACREU has established long-term, population-based studies on the progression of severe hip and knee arthritis (including the need for joint replacement surgery).
ACREU has been instrumental in documenting the nature of the impact of arthritis and the gaps and needs in existing services. ACREU has increased awareness of the importance of arthritis and its adverse consequences, including increased health care utilization, loss of employment, reduced quality of life, and the high economic and societal costs. It has also provided the rationale for successful funding of the Canadian Arthritis Network (CAN), and the Canadian Institutes of Health Research’s Institute of Musculoskeletal Health and Arthritis.
ACREU has also advocated to place arthritis on the health policy agenda. ACREU co-authored an ICES Practice Atlas, Patterns of Health Care in Ontario: Arthritis and Related Conditions (1998), which led to the development of a joint MOHLTC-The Arthritis Society Arthritis Strategy Action Group. ACREU provided scientific leadership for a Health Canada Initiative “Arthritis in Canada” to document the population and public health impact of arthritis and to develop a national arthritis surveillance strategy. Both Arthritis in Canada (2003), as well as the Arthritis and Related Conditions in Ontario: ICES Research Atlas (2004) are key documents contributing to our understanding of arthritis and how it affects the population.
An Integrated Model of Care for Total Joint Replacement is a project that has created an integrated cross sector model of care with common care pathways for people undergoing primary total hip or knee replacement in the Greater Toronto area. The integrated model of care enhances education for patients and their families and includes a triage program of home-based or inpatient rehabilitation based on patient need.
In a large multi-year project, SPARCC: Improving Outcomes in Inflammatory Arthritis, funded by The Arthritis Society, an ACREU Investigator is leading a component of the project that will evaluate the societal impact of spondyloarthritis.
Fibrosis, or scarring of the soft tissues, results in serious impact on patient function and quality of life and occurs in patients with scleroderma and in 50% of patients treated with radiotherapy for various cancers. Quantifying Soft Tissue Fibrosis is a project to evaluate measurement properties in two new measures, one a clinician-rating scale and the other a quantitative measure of biomechanical properties of the skin in people with scleroderma and those treated with radiotherapy for cancer.
See further details on ACREU’s research projects.
ACREU continues to work closely with the Ontario Ministry of Health and Long Term Care (MOHLTC) on aspects related to improving services for arthritis in Ontario, and also on rehabilitation policies and programs. ACREU currently has two ministry partners, the Population Health Policy Unit (PHPU) and the Mental Health and Rehabilitation Policy Unit. ACREU is carrying out research to support these partners. In addition, ACREU has partnerships with The Arthritis Society, Ontario Division (TASOD) and the Institute for Clinical Evaluative Sciences (ICES). To respond to requests from the MOHLTC, ACREU has organized two research teams with the major deliverables being reports.
The major goal of research in this theme is to support priorities of the Ministry relating to the prevention and management of arthritis and related conditions in Canada, particularly those using arthritis as a model for the prevention and management of chronic disease. A major and continuing focus is access to appropriate care for arthritis and related conditions, including specialist services such as orthopaedic surgery.
Orthopaedic surgeons are central to the provision of total joint replacement and long-term strategies need to consider their availability. This year, the Arthritis Community Research and Evaluation Unit (ACREU) will build on the research conducted in 2005/2006 as reported in the interim report Patterns of Use of Orthopaedic Surgeon Services in Ontario. The objective of ACREU’s research is to examine the workload of orthopedic surgeons in Ontario using administrative data (Ontario Health Insurance Plan database and Canadian Institute for Health Information databases). We will examine:
A report on the findings of this research will be completed for the MOHLTC by March 31, 2007 to serve as basis for consultation with the orthopaedic community and other relevant stakeholders. Further examination of orthopaedic procedures is crucial to freeing up orthopaedic resources for joint replacement surgery to increase capacity in the system and to decrease waiting times, while at the same time ensure that other vital areas of care are not neglected.
The objective of this research is to examine the current level of orthopaedic manpower and practice patterns of orthopaedic surgeons in Ontario. A survey will be sent to all orthopaedic surgeons in Ontario to update the information on orthopaedic manpower and workload collected in previous years by ACREU, including information on the amount of office, operating and on-call time and practice patterns. These findings will help inform program and policy development for the provision of orthopaedic services in the province. A report on the findings of this research will be completed for the MOHLTC by March 31, 2007.
Trends indicate a growing gap between the number of people needing care for arthritis and access to appropriate services. Given shortages and geographic misdistribution of specialists, there is a need to explore alternative models of health care delivery to ensure that Ontarians have timely access to quality care. The current project is a continuation of the work ACREU completed between 2004 and 2006 reported in the ACREU working reports An Exploration of Comprehensive Interdisciplinary Models for Arthritis and An Overview of Developments in Comprehensive Models of Care for Arthritis: Provider and Patient Perspectives. This previous research described various models of care that have developed internationally to address the issues in access to care and to provide optimal care for individuals with arthritis. It also provided insight into the perspectives of people living with arthritis regarding their health care needs. Building on this previous work on models of care, our current work aims to explore the ways people with arthritis manage arthritis as a chronic disease in the community, with reference to use of and perceived needs for community-based and health services. Qualitative methods such as key informant interviews or focus groups and consultation with stakeholders will be used. A report to the MOHLTC on arthritis management in the community will be completed by March 31, 2007.
The purpose of this project is to examine the geographic distribution of existing data sources pertaining to Ontario community-based rehabilitation to describe current capacity and demand for adult rehabilitation services within each Local Health Integration Network (LHIN). Analyses using descriptive statistics and geographic information systems (mapping) will be applied to integrate information and evidence-based findings to identify needs, gaps, and opportunities to assist in policy decision-making for the allocation of resources for community-based rehabilitation within each LHIN.
A primary role of ACREU is to distribute information and to contribute to public awareness about arthritis and health policy and planning. In the 14 years since ACREU was formed, its researchers have produced a collection of peer-reviewed scientific papers, working reports, and contributed or written chapters in edited books and academic proceedings. See a full list of these and other ACREU publications.
In March 2004, 100 rheumatologists, orthopaedic surgeons, health professionals, people with arthritis, representatives of the Ministry of Health and Long Term Care and other stakeholders participated in ACREU’s day-long dissemination event, “Improving Access to Effective Care for Arthritis in Ontario.” The purpose of this event was to develop recommendations to stakeholders for improving arthritis care in Ontario and has resulted in an ongoing cross-sectoral initiative.
ACREU, in association with CARE III, held the Third International Conference on Models of Care and Rehabilitation of Rheumatic Diseases on May 11, 2005. The symposium featured a number of international and local speakers from a variety of disciplines who shared experiences and research on models of care for arthritis. The purpose of this event was to develop study design and outcome measures in arthritis care models and non-pharmacological treatment research.
