In this issue
- The JointHealth� Survey on Arthritis Treatment and Care
- The results are in
- What you told us: key survey findings
JointHealth™ insight Published April 2008
As part of its ongoing effort to bring the voices and experiences of people living with arthritis to the public, medical and research communities and government, Arthritis Consumer Experts (ACE) recently conducted the JointHealth™ Survey on Arthritis Treatment and Care to find out what readers who live with arthritis need or want in terms of their arthritis treatment and care.
This issue of JointHealth™ monthly is devoted to reporting back to readers and getting the important information gathered through the survey out to those caring for, or working on behalf of, people living with arthritis.
The JointHealth™ Survey on Arthritis Treatment and Care
As part of its ongoing effort to bring the voices and experiences of people living with arthritis to the public, medical and research communities and government, Arthritis Consumer Experts (ACE) recently conducted the JointHealth™ Survey on Arthritis Treatment and Care to find out what readers who live with arthritis need or want in terms of their arthritis treatment and care.
This issue of JointHealth™ monthly is devoted to reporting back to readers and getting the important information gathered through the survey out to those caring for, or working on behalf of, people living with arthritis.
Not surprisingly, the survey responses mirrored what current academic-based arthritis research is telling us: there are significant gaps in treatment and care for people living with arthritis. From insufficient provincial and territorial government reimbursement for prescriptions medications, lack of information and facilities aimed at promoting arthritis-appropriate exercise programs, to lengthy wait times to see arthritis specialists and undergo surgery. Despite having a "universal health care system", people with arthritis are receiving poorer quality service and fewer treatment options than people living with cancer or HIV and this is having a profoundly negative impact on their disease and quality of life.
Similar to other acute or chronic diseases, research in arthritis is conclusive that receiving an early diagnosis is vitally important to slowing or stopping disease progression resulting in joint pain, damage and disability. Current research also confirms that a multi-disciplinary model of arthritis treatment and care produces the best health outcomes or "results" for the person living with the disease. Alarmingly, current models of arthritis treatment and care do not reflect "state of the art" scientific and medical knowledge.
What makes up an ideal treatment and care model for people with arthritis? The foundation comprises these three important pieces:
When comparing what is known to be the best model of care for people with arthritis to the JointHealth™ Survey on Arthritis Treatment and Care responses, we learn very quickly that respondents to the survey are not getting what they want or need.
For example, inside this issue you will read that 23 percent of respondents with ankylosing spondylitis—a type of arthritis that affects the spine—waited one to three years to receive a confirmed diagnosis. Given that a delay in diagnosis can lead to permanent joint damage and disability, the health care system must be "re-modeled" to better respond to the need for early diagnoses.
To learn more about what people responding to the Survey said, read this month's feature article: The results are in.
For more information on treating inflammatory arthritis and osteoarthritis, please visit the JointHealth™ Monthly archive for March 2007 and December 2007: Public awareness around arthritis issues comes in many forms, be it writing a letter to your MLA urging government to provide coverage of essential arthritis medications or sharing your arthritis story with others in the media. Education around various treatment options and the role of a treatment plan is important for people with arthritis because it increases the likelihood they will adhere to their treatment plan and better manage their arthritis symptoms. Continuing education is also necessary to keep on top of the current treatment and research advancements.
The results are in
In November 2007, Arthritis Consumer Experts (ACE) developed and administered an internet-based survey to gather information on the healthcare and treatment needs of people living with arthritis.
Timely access to treatment and care is critical for people living with arthritis. Research shows that delays in accessing appropriate treatment and care can result in higher rates of disability, increased joint damage, increased pain, and significant reduction in quality of life1.
Despite this, research tells us that many Canadians living with arthritis are not receiving timely and/or effective treatment or care when and where they need it2. There are many reasons for this, including:
What you told us: Key Survey findings
Getting an arthritis diagnosis: A significant challenge
In order to receive timely access to treatment and care, a person needs a diagnosis. Yet, research indicates that this is not always an easy or simple process. Diagnosis times may vary according to:
For respondents living with inflammatory types of arthritis, 57% received a diagnosis in less than one year and 20% in 1-3 years. While this may seem like an acceptable period of time for diagnosis, it is important to look at the differences in diagnosis times between the types of inflammatory arthritis diseases as there are valuable findings that emerge.
For example, while we can see in the chart below that 58% of people living with rheumatoid arthritis received their diagnosis in less than one year, only 26% of people living with ankylosing spondylitis and 38% of people with lupus were able to get a diagnosis in this time frame.
Even more troubling is the percentage of respondents who had to wait more than 10 years to be diagnosed with their disease, including 23% of people living with ankylosing spondylitis and 23% of people living with lupus. This stands in stark comparison to only 2% of those respondents living with rheumatoid arthritis.
The lengthy delays in getting a diagnosis for people living with ankylosing spondylitis and lupus are highly problematic because of the impact on accessing treatment and care. Research has proven that starting treatment for inflammatory arthritis in the early stage of disease onset is the best way to prevent irreversible joint damage. In fact, we now know that there is a small window of time, at the outset of the disease process, when proper treatment can actually prevent joint damage4.
Unfortunately, many people with arthritis in Canada are not receiving the best treatment possible. Recent research conducted by Dr. Diane Lacaille found that only 43 percent of the people diagnosed with rheumatoid arthritis in British Columbia received disease modifying anti-rheumatic drugs (DMARDs), a class of medications considered "essential" to preventing joint damage and controlling disease in the early going.5
Diagnosis and the healthcare system
The issue of timely diagnoses has a significant impact on the lives of people living with arthritis in terms of managing their disease, and also has a considerable impact on the health care system. When we asked people how many health care professionals they saw before receiving their diagnosis, there were important differences between different arthritis disease groups.
The majority of respondents living with rheumatoid arthritis and osteoarthritis saw no more than two health care professionals to get a diagnosis, with only 25% and 20%, respectively, seeing more than three health care professionals.
In contrast, those respondents with psoriatic arthritis, ankylosing spondylitis and lupus were more likely to see three or more professionals before being diagnosed, 51%, 62% and 65%, respectively. In addition, for respondents with lupus and ankylosing spondylitis, 17% and 19% respectively saw more than 6 health care professionals before receiving a diagnosis.
The need to see more than three, and in some cases many more than six, health care professionals to receive a diagnosis negatively impacts the health of people living with arthritis and adds unnecessary costs to a health system already suffering from cost pressures.
Treatment options: How Survey respondents currently manage their disease
The top three treatments, tools and therapies that respondents are currently using to treat their arthritis are:
In addition to the top three, individuals also reported using self-management programs (27%), registered massage therapy (23%), physiotherapy (22%), house cleaning services (14%) and medicinal marijuana (3%).
The findings regarding treatment are similar to what research has shown that people living with arthritis use to manage their disease. While appropriate treatment with prescription medications is a key tool for people living with arthritis, in particular inflammatory arthritis, it is encouraging to see so many respondents say they use exercise. Research tells us that exercise is a key aspect of arthritis treatment. It helps to keep the muscles strong, protecting the joints and is also an important way to maintain a healthy body weight6. In addition to those benefits, exercise is beneficial for mental well-being and can be a good way to socialize with friends and family.
Gaps in arthritis treatment and care: Issues of cost and coverage
In addition to asking respondents what they currently use to manage their disease, an important aspect of this survey was to find out what treatments, tools, and therapies people with arthritis indicated they needed but were not receiving due to financial cost. The top five overall responses are:
When we look at this data by disease groups, focusing on osteoarthritis, rheumatoid arthritis, ankylosing spondylitis and psoriatic arthritis, we see that with the exception of respondents with ankylosing spondylitis who listed massage therapy as something they need but are not receiving due to cost (31.7%), exercise therapy was the top answer for these respondents. This is an important finding and one that needs to be addressed by policy makers, health care providers and people living with arthritis. As exercise is central to managing arthritis diseases, barriers to exercise—such as cost—need to be removed.
In addition to the top five treatments, tools and therapies people reported needing but not receiving due to cost, 19% of respondents indicated not receiving their needed prescription medications due to cost. This is an alarming finding because research has shown that appropriate treatment of certain types of arthritis with prescription medications are one of the most important methods to managing the pain, joint destruction and disability of arthritis7.
As well, this finding sheds light on the problems that exist in provincial and territorial drug plan reimbursement programs. On further inspection, important geographic differences emerge. For example, 20.9% of people with rheumatoid arthritis in BC responded that they need prescription meds that they are not currently receiving due to cost. This compares with only 7.7% of Ontario respondents with rheumatoid arthritis.
Similar findings appear in respondents living with psoriatic arthritis and ankylosing spondylitis. In British Columbia, 27.3% respondents with psoriatic arthritis are not currently receiving prescription meds they need due to cost and 22.2% of people with ankylosing spondylitis need prescription meds that they are not currently receiving due to cost. While we can only speculate, one of the reasons for these findings may be related to the differences in medication coverage across Canada.
As we noted in our 2007 September/October issue of JointHealth™ monthly, formulary reimbursement listings for arthritis medications vary widely across the country. For example, people living in Manitoba with ankylosing spondylitis have no access to provincial reimbursement for biologic response modifiers; people in Ontario with the same disease have financial coverage from the province for two biologic medications.
Treatment priorities: in your perfect world
Respondents were asked to indicate their priorities in terms of which tools, therapies and treatments they want to have reimbursed 100%. The top four first priorities that people listed include:
Far too often, the voices of people living with disease are not included in research. Yet, we know that patients' voices and experiences provide a unique and important contribution to the body of knowledge on arthritis. That is why Arthritis Consumer Experts is committed to gathering your views through surveys such as the one reported above.
Thank you to everyone who participated in the JointHealth™ Survey on Arthritis Treatment and Care. Your participation helped to ensure that the voices of people with arthritis are heard by researchers and health policy decision-makers.
Links to internet sites with credible research information:
Arthritis Consumer Experts and ACE Planning and Consulting Inc. encourage the use and dissemination of the information in this document. Please kindly cite the source of the information you or your organization uses from it. Thank you.
Acknowledgement
Over the past 12 months, ACE received unrestricted grants-in-aid from: Abbott Laboratories Ltd., Amgen Canada / Wyeth Pharmaceuticals, Bristol-Myers Squibb Canada, GlaxoSmithKline, Hoffman-La Roche Canada Ltd., Merck Frosst Canada, Pfizer Canada and Schering-Plough Canada, UCB Pharma Canada Inc. ACE also receives unsolicited donations from its community members (people with arthritis) across Canada.
ACE thanks these private and public organizations and individuals.
As part of its ongoing effort to bring the voices and experiences of people living with arthritis to the public, medical and research communities and government, Arthritis Consumer Experts (ACE) recently conducted the JointHealth™ Survey on Arthritis Treatment and Care to find out what readers who live with arthritis need or want in terms of their arthritis treatment and care.
This issue of JointHealth™ monthly is devoted to reporting back to readers and getting the important information gathered through the survey out to those caring for, or working on behalf of, people living with arthritis.
The JointHealth™ Survey on Arthritis Treatment and Care
As part of its ongoing effort to bring the voices and experiences of people living with arthritis to the public, medical and research communities and government, Arthritis Consumer Experts (ACE) recently conducted the JointHealth™ Survey on Arthritis Treatment and Care to find out what readers who live with arthritis need or want in terms of their arthritis treatment and care.
This issue of JointHealth™ monthly is devoted to reporting back to readers and getting the important information gathered through the survey out to those caring for, or working on behalf of, people living with arthritis.
Not surprisingly, the survey responses mirrored what current academic-based arthritis research is telling us: there are significant gaps in treatment and care for people living with arthritis. From insufficient provincial and territorial government reimbursement for prescriptions medications, lack of information and facilities aimed at promoting arthritis-appropriate exercise programs, to lengthy wait times to see arthritis specialists and undergo surgery. Despite having a "universal health care system", people with arthritis are receiving poorer quality service and fewer treatment options than people living with cancer or HIV and this is having a profoundly negative impact on their disease and quality of life.
Similar to other acute or chronic diseases, research in arthritis is conclusive that receiving an early diagnosis is vitally important to slowing or stopping disease progression resulting in joint pain, damage and disability. Current research also confirms that a multi-disciplinary model of arthritis treatment and care produces the best health outcomes or "results" for the person living with the disease. Alarmingly, current models of arthritis treatment and care do not reflect "state of the art" scientific and medical knowledge.
What makes up an ideal treatment and care model for people with arthritis? The foundation comprises these three important pieces:
When comparing what is known to be the best model of care for people with arthritis to the JointHealth™ Survey on Arthritis Treatment and Care responses, we learn very quickly that respondents to the survey are not getting what they want or need.
For example, inside this issue you will read that 23 percent of respondents with ankylosing spondylitis—a type of arthritis that affects the spine—waited one to three years to receive a confirmed diagnosis. Given that a delay in diagnosis can lead to permanent joint damage and disability, the health care system must be "re-modeled" to better respond to the need for early diagnoses.
To learn more about what people responding to the Survey said, read this month's feature article: The results are in.
For more information on treating inflammatory arthritis and osteoarthritis, please visit the JointHealth™ Monthly archive for March 2007 and December 2007: Public awareness around arthritis issues comes in many forms, be it writing a letter to your MLA urging government to provide coverage of essential arthritis medications or sharing your arthritis story with others in the media. Education around various treatment options and the role of a treatment plan is important for people with arthritis because it increases the likelihood they will adhere to their treatment plan and better manage their arthritis symptoms. Continuing education is also necessary to keep on top of the current treatment and research advancements.
The results are in
In November 2007, Arthritis Consumer Experts (ACE) developed and administered an internet-based survey to gather information on the healthcare and treatment needs of people living with arthritis.
Timely access to treatment and care is critical for people living with arthritis. Research shows that delays in accessing appropriate treatment and care can result in higher rates of disability, increased joint damage, increased pain, and significant reduction in quality of life1.
Despite this, research tells us that many Canadians living with arthritis are not receiving timely and/or effective treatment or care when and where they need it2. There are many reasons for this, including:
- Lengthy delays in getting referred to an arthritis specialist (rheumatologist)
- Lengthy delays in getting an appointment to see a rheumatologist
- Patient characteristics (for example, age, gender and social or economic status)
- Disparities in reimbursement coverage for medications through provincial or territorial health plans or private health insurance.
What you told us: Key Survey findings
Getting an arthritis diagnosis: A significant challenge
In order to receive timely access to treatment and care, a person needs a diagnosis. Yet, research indicates that this is not always an easy or simple process. Diagnosis times may vary according to:
- gender
- age
- type of arthritis
- place of residence
- access to specialists, specifically rheumatologists3.
- The length of time it took to receive this diagnosis from the first visit to a health care professional for their symptoms.
- The number of health care professionals individuals saw before receiving their diagnosis.
For respondents living with inflammatory types of arthritis, 57% received a diagnosis in less than one year and 20% in 1-3 years. While this may seem like an acceptable period of time for diagnosis, it is important to look at the differences in diagnosis times between the types of inflammatory arthritis diseases as there are valuable findings that emerge.
For example, while we can see in the chart below that 58% of people living with rheumatoid arthritis received their diagnosis in less than one year, only 26% of people living with ankylosing spondylitis and 38% of people with lupus were able to get a diagnosis in this time frame.
Even more troubling is the percentage of respondents who had to wait more than 10 years to be diagnosed with their disease, including 23% of people living with ankylosing spondylitis and 23% of people living with lupus. This stands in stark comparison to only 2% of those respondents living with rheumatoid arthritis.
The lengthy delays in getting a diagnosis for people living with ankylosing spondylitis and lupus are highly problematic because of the impact on accessing treatment and care. Research has proven that starting treatment for inflammatory arthritis in the early stage of disease onset is the best way to prevent irreversible joint damage. In fact, we now know that there is a small window of time, at the outset of the disease process, when proper treatment can actually prevent joint damage4.
Unfortunately, many people with arthritis in Canada are not receiving the best treatment possible. Recent research conducted by Dr. Diane Lacaille found that only 43 percent of the people diagnosed with rheumatoid arthritis in British Columbia received disease modifying anti-rheumatic drugs (DMARDs), a class of medications considered "essential" to preventing joint damage and controlling disease in the early going.5
Diagnosis and the healthcare system
The issue of timely diagnoses has a significant impact on the lives of people living with arthritis in terms of managing their disease, and also has a considerable impact on the health care system. When we asked people how many health care professionals they saw before receiving their diagnosis, there were important differences between different arthritis disease groups.
The majority of respondents living with rheumatoid arthritis and osteoarthritis saw no more than two health care professionals to get a diagnosis, with only 25% and 20%, respectively, seeing more than three health care professionals.
In contrast, those respondents with psoriatic arthritis, ankylosing spondylitis and lupus were more likely to see three or more professionals before being diagnosed, 51%, 62% and 65%, respectively. In addition, for respondents with lupus and ankylosing spondylitis, 17% and 19% respectively saw more than 6 health care professionals before receiving a diagnosis.
The need to see more than three, and in some cases many more than six, health care professionals to receive a diagnosis negatively impacts the health of people living with arthritis and adds unnecessary costs to a health system already suffering from cost pressures.
Treatment options: How Survey respondents currently manage their disease
The top three treatments, tools and therapies that respondents are currently using to treat their arthritis are:
In addition to the top three, individuals also reported using self-management programs (27%), registered massage therapy (23%), physiotherapy (22%), house cleaning services (14%) and medicinal marijuana (3%).
The findings regarding treatment are similar to what research has shown that people living with arthritis use to manage their disease. While appropriate treatment with prescription medications is a key tool for people living with arthritis, in particular inflammatory arthritis, it is encouraging to see so many respondents say they use exercise. Research tells us that exercise is a key aspect of arthritis treatment. It helps to keep the muscles strong, protecting the joints and is also an important way to maintain a healthy body weight6. In addition to those benefits, exercise is beneficial for mental well-being and can be a good way to socialize with friends and family.
Gaps in arthritis treatment and care: Issues of cost and coverage
In addition to asking respondents what they currently use to manage their disease, an important aspect of this survey was to find out what treatments, tools, and therapies people with arthritis indicated they needed but were not receiving due to financial cost. The top five overall responses are:
When we look at this data by disease groups, focusing on osteoarthritis, rheumatoid arthritis, ankylosing spondylitis and psoriatic arthritis, we see that with the exception of respondents with ankylosing spondylitis who listed massage therapy as something they need but are not receiving due to cost (31.7%), exercise therapy was the top answer for these respondents. This is an important finding and one that needs to be addressed by policy makers, health care providers and people living with arthritis. As exercise is central to managing arthritis diseases, barriers to exercise—such as cost—need to be removed.
In addition to the top five treatments, tools and therapies people reported needing but not receiving due to cost, 19% of respondents indicated not receiving their needed prescription medications due to cost. This is an alarming finding because research has shown that appropriate treatment of certain types of arthritis with prescription medications are one of the most important methods to managing the pain, joint destruction and disability of arthritis7.
As well, this finding sheds light on the problems that exist in provincial and territorial drug plan reimbursement programs. On further inspection, important geographic differences emerge. For example, 20.9% of people with rheumatoid arthritis in BC responded that they need prescription meds that they are not currently receiving due to cost. This compares with only 7.7% of Ontario respondents with rheumatoid arthritis.
Similar findings appear in respondents living with psoriatic arthritis and ankylosing spondylitis. In British Columbia, 27.3% respondents with psoriatic arthritis are not currently receiving prescription meds they need due to cost and 22.2% of people with ankylosing spondylitis need prescription meds that they are not currently receiving due to cost. While we can only speculate, one of the reasons for these findings may be related to the differences in medication coverage across Canada.
As we noted in our 2007 September/October issue of JointHealth™ monthly, formulary reimbursement listings for arthritis medications vary widely across the country. For example, people living in Manitoba with ankylosing spondylitis have no access to provincial reimbursement for biologic response modifiers; people in Ontario with the same disease have financial coverage from the province for two biologic medications.
Treatment priorities: in your perfect world
Respondents were asked to indicate their priorities in terms of which tools, therapies and treatments they want to have reimbursed 100%. The top four first priorities that people listed include:
Far too often, the voices of people living with disease are not included in research. Yet, we know that patients' voices and experiences provide a unique and important contribution to the body of knowledge on arthritis. That is why Arthritis Consumer Experts is committed to gathering your views through surveys such as the one reported above.
Thank you to everyone who participated in the JointHealth™ Survey on Arthritis Treatment and Care. Your participation helped to ensure that the voices of people with arthritis are heard by researchers and health policy decision-makers.
Links to internet sites with credible research information:
- www.arthritisconsumerexperts.org
- www.arthritisresearch.ca
- http://www.nlm.nih.gov/hinfo.html
- http://www.cihr-irsc.gc.ca/e/193.html
Arthritis Consumer Experts and ACE Planning and Consulting Inc. encourage the use and dissemination of the information in this document. Please kindly cite the source of the information you or your organization uses from it. Thank you.
- Finckh et al., 2006: 864; Suter et al. , 2004: 300;
- Lacaille et al, 2005;Yelin et al., 2007; Suter et al., 2006; Kasman and Badley, 2004: 1;
- Ozbek et al., 2003; Feldman et al., 2006; Bernatsky et al. 2006; Suter, et al, 2004; Lacaille et al., 2005.
- Lacaille et al. 2005
- ibid
- Andersen et al., 1997; Bruce et al., 2005
- Van der Heijde et al., 2006; Lambert et al., 2007; Heiberg et al., 2008
Acknowledgement
Over the past 12 months, ACE received unrestricted grants-in-aid from: Abbott Laboratories Ltd., Amgen Canada / Wyeth Pharmaceuticals, Bristol-Myers Squibb Canada, GlaxoSmithKline, Hoffman-La Roche Canada Ltd., Merck Frosst Canada, Pfizer Canada and Schering-Plough Canada, UCB Pharma Canada Inc. ACE also receives unsolicited donations from its community members (people with arthritis) across Canada.
ACE thanks these private and public organizations and individuals.
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ACE thanks Arthritis Research Canada (ARC) for its scientific review of ACE and JointHealth™ information and education programs.