CA N A D I A N A RT H RI T I S N E T WO R K
PAIN AND ARTHRITIS
January 28 – 29, 2006
Canadian Arthritis Network
Pain and Arthritis Workshop: The Consumer Perspective
January 28-29, 2006
Introduction ............................................................................................................................. 3
Theme 1: What is the origin of arthritis pain?........................................................................ 3
Theme 2: Improving our assessment of pain ........................................................................ 4
Theme 3: What could be useful new targets to treat arthritis pain? ..................................... 5
Theme 4: What alternative, non-pharmacological treatments could be used to
effectively treat arthritis pain? ............................................................................................... 6
Theme 5: How can we better manage the psychosocial consequences of chronic
joint pain and fatigue? ............................................................................................................ 7
Next Steps: How does CAN facilitate achieving the short and long term goals in
arthritis pain research? .......................................................................................................... 9
Last thoughts........................................................................................................................... 10
Consumer Perspective PAIN AND ARTHRITIS WORKSHOP 1
PAIN AND ARTHRITIS RESEARCH WORKSHOP:
CONSUMER PAIN WORKING GROUP
Consumer Perspective PAIN AND ARTHRITIS WORKSHOP 2
The identification and management of pain is a key issue for people living with arthritis.
Chronic pain leads to disruptions in how consumers are able to live their lives. It changes
how they see and experience their bodies, it complicates interactions with family, friends
and co-workers and limits their ability to work and participate in social events. For arthritis
consumers, these experiences can result in feelings of anxiety, frustration, depression and
isolation. For this reason, the need to prioritize pain research is absolutely fundamental for
people living with arthritis.
The Workshop on Pain and Arthritis, held in January 2006 in Calgary and hosted by the
Canadian Arthritis Network (CAN), was eagerly anticipated by consumers active in the
arthritis community. The guiding principle of the Workshop was to bring together different
groups of individuals (scientists, clinicians, industry partners and people with arthritis)
dedicated to solving the problem of arthritis pain. The goal of the Workshop was to foster
future partnerships, formulate original ideas and develop, through research, new
therapeutic approaches that would one day bring relief to millions of people with arthritis.
From day one consumers were a critical part of this meeting, fully involved in the planning,
presentations and discussion groups. Eleven people with arthritis attended the Workshop
and they represented a range of ages, cultures, and types and duration of arthritis. Two
people with arthritis participated in each discussion group, which focused on answering one
key question. This paper is a summary of what consumers in attendance felt were the most
relevant ideas to come out of the meeting.
THEME 1: WHAT IS THE ORIGIN OF ARTHRITIS PAIN?
Understanding pain is a critical issue for people living with arthritis. Pain is a constant,
overwhelming yet misunderstood aspect of arthritis and one that needs to be better
understood in order to treat it more effectively. One conclusion that came through loud and
clear during this discussion was that we need to treat arthritis pain as a primary target
rather than viewing it as secondary to another disorder. By doing so, researchers will be
able to focus on the origin of arthritis pain. The working group identified a number of key
questions requiring answers, which are outlined below. These questions should be the
focus of future research into arthritis pain:
• What is actually generating joint pain? More scientific evidence is needed to answer this
• Why does the severity of pain differ for some people living with arthritis regardless of
tissue damage? More understanding is needed of the pain thresholds and understanding
of how the pain experience can vary so significantly from one person to another.
Consumer Perspective PAIN AND ARTHRITIS WORKSHOP 3
• How do chemicals (organic), environmental factors, cultural and social factors influence
the pain experience? We need to understand what factors influence people’s pain and
the degree of pain people experience.
• If each person’s experience with pain is different, how does the individual deal with it?
• Are there certain approaches that work better for different people (i.e. gender based, age
based or culturally appropriate programs)?
• What new targets remain to be discovered to identify the origin of pain and serve to
create more effective treatments for pain? What internal mechanisms might be included
in this (i.e. chemicals,* cytokines,** endocannabinoids,*** structural damage in soft
• How could a holistic approach be included in research on the origin and treatment of
pain? What can other non-medical approaches bring to our understanding of arthritis
• Do certain exercises cause more pain or does exercise help alleviate pain? If so, why?
There needs to be more research on exercise so that we know what works and what
* Chemicals are substances with a distinct molecular structure.
** Cytokines are a family of proteins secreted by cells that can alter the intensity and duration of
cellular behaviour including immune and inflammatory reactions.
*** Endocannabinoids are a family of chemicals that have similar properties to cannabis, but which
are naturally produced in the body.
THEME 2: IMPROVING OUR ASSESSMENT OF PAIN
Patients with arthritis understand the difficulties in effectively communicating their pain to a
physician, particularly since pain is such a personal experience. How many times have you
advised your rheumatologist of painful joints, but fallen short in fully explaining your
personal situation? This highlights the importance of adequate tools that define and assess
pain. People living with arthritis, researchers, clinicians and industry representatives all
expressed frustration with current measurement tools for pain. The discussion raised
several relevant gaps in our knowledge and highlighted areas of research that we need to
prioritize. The working group identified a number of key questions requiring answers,
which are outlined below. These questions should be the focus of future research into
• What pain assessment tools work best in a given setting? We need to provide patients
with descriptors they can call their own and use effectively. We need to encourage the
assessment of pain using valid and reliable measures in the arthritis clinic setting with
physicians and patients.
Consumer Perspective PAIN AND ARTHRITIS WORKSHOP 4
• Why are pain assessments not conducted at regular intervals in a clinical setting? This is
crucial to reaching a better understanding of what is contributing to worsening pain or to
the alleviation of pain.
• What 'objective’ measures of pain could be developed? Though the nature of such
measurements has yet to be identified, some options include: functional MRI, evoked
potentials and muscle hypersensitivity. Development of improved imaging approaches
may lead the way to earlier diagnosis and better correlation with pain levels.
• What barriers exist to patients effectively communicating pain to their doctors?
Consumers identified that physicians don't always take their pain seriously.
• Do animal models of pain translate well to humans? Much of our understanding of pain
and measurement tools comes from animal models. This could pave the way for
innovative approaches to the management of joint pain.
• Is fatigue appropriately captured in current definitions and assessments of pain? Many
believe that more pain = more fatigue.
• Do we know the effectiveness of pain assessment in paediatric populations?
• Do we fully appreciate the side effects of various medications to balance the assessment
• We need to be able to define subgroups within disease populations, including paediatrics
(using tissue banks, histopathology*, genetics, clinical characteristics, etc.). Subgroup
identification should improve classification by diagnosis, prognosis and response to
interventions (also take into account the racial/ethnic variability, culture and gender). We
need to standardize data collection criteria for clinical studies/practice.
* Histopathology is a science whereby tissue samples can be viewed under a microscope and
assessed for their level of disease.
THEME 3: WHAT COULD BE USEFUL NEW TARGETS TO TREAT ARTHRITIS
Managing arthritis pain is obviously something that everyone at this meeting was thinking
about. Some medications exist today to treat arthritis pain, but new ones still need to be
developed to enable a full range of treatment options for people with arthritis. A target is
used as the basis for developing new medications to treat a disease. For example, a
protein called tumor necrosis factor (or TNF) is the target for many new arthritis medications,
such as Humira. Finding new targets is useful for developing new medications to treat
arthritis pain in order to offer more treatment options to people who are suffering. The
working group identified a number of key questions requiring answers, which are outlined
below. These questions should be the focus of future research into arthritis pain:
Consumer Perspective PAIN AND ARTHRITIS WORKSHOP 5
• What alternative, non-pharmacological treatments could be used to effectively treat
• Do rheumatoid arthritis (RA) and osteoarthritis (OA) have different pain targets? How
can these be used to create new treatments?
• Is there a difference between chronic pain and acute pain? We need to know whether
they need to be treated differently.
• Could there be a chemical reason for fatigue and pain? Is it stress related? Would new
targets to treat pain also relieve fatigue directly?
• How significant are clinical outcomes? How effective is pain relief and are we measuring
• How relevant are the models we are currently using in academia and industry?
• What new targets can we identify for new treatments to manage pain (e.g.
• Why is the internal pain system not working in arthritis patients and what can we do to
• With the development of new treatments, we need to pay attention to associated side
effects and work with consumers to ensure they are able to adhere to these medications.
* Endogenous cannabinoid/opioid systems are substances that are naturally produced in the body
that have properties that are similar to cannabis (endocannabinoids) or are like morphine
THEME 4: WHAT ALTERNATIVE, NON-PHARMACOLOGICAL TREATMENTS
COULD BE USED TO EFFECTIVELY TREAT ARTHRITIS PAIN?
Non-pharmacological treatments represent a broad range of healing philosophies,
approaches, and therapies that Western (conventional) medicine does not commonly use
to promote well-being or treat health conditions. Examples include acupuncture, herbs,
massage, etc. Many people with arthritis use these types of approaches as primary or
secondary therapies for the disease. However, the working group identified that there is
limited scientific evidence on the efficacy and effectiveness of these treatments. The
working group identified a number of key questions requiring answers, which are outlined
below. These questions should be the focus of future research into arthritis pain:
• What are the effects of combined treatments of mainstream (e.g. pharmaceuticals),
complementary and alternative medicine (e.g. massage). Is this a critical need,
particularly in the paediatric population?
• What are novel approaches to ensure clinicians are familiar with complementary and
alternative therapies/natural health products so they are able to provide adequate advice
Consumer Perspective PAIN AND ARTHRITIS WORKSHOP 6
• What funding structure could be developed to provide for adequate support for
interdisciplinary research on non-pharmaceutical products in arthritis? The current
funding structure is inadequate to support this type of research.
• What are novel ways to engage industry in the discussion on non-pharmacological
treatments? Their current focus is on drug development, not on the testing of non-
• How do we increase trust between the alternative/complementary therapy field and
traditional medicine? Currently, mistrust hinders the exchange of knowledge between the
• How does an individual’s cultural and ethnic background influence the use of non-
pharmaceutical products for arthritis? We understand that this can be a major influence.
• How do we encourage more robust science in most non pharmacological/complementary
and alternative treatments? There is a need to increase the evidence on efficacy and
effectiveness as it is currently lacking due to poor research design and reporting.
• Patients and health professionals want to know the following about non-pharmacological
treatments: dosage, timing, cost-effectiveness, safety, reported adverse events, and
treatment interactions? There is currently a lack of information in this area.
• Consensus is required on the language/definitions about non-pharmacological
treatments/complementary and alternative therapies (re: including consumers to ensure
that we understand what is being spoken about and how to describe treatments).
• Outcome measures* are needed to adequately capture the effects of non-
• What are the most effective strategies to disseminate evidence-based information to
appropriate stakeholders? To address this we need better research on what constitutes
effective strategies and the most appropriate way to implement these strategies into
* Outcome measures are methods employed to determine the effectiveness of a treatment.
THEME 5: HOW CAN WE BETTER MANAGE THE PSYCHOSOCIAL
CONSEQUENCES OF CHRONIC JOINT PAIN AND FATIGUE?
Psychosocial research looks at the emotional (psychological) and social impact that arthritis
pain has on patients, on their families and on their careers. Psychosocial research also
looks at the importance of help and support for arthritis patients. People with arthritis have
likely felt the psychosocial impacts of the disease on their life, ranging from reduced to zero
participation in leisure activities to the inability to participate fully in school and work. It was
clear from the discussion that everyone involved in the pain workshop, from clinicians to
researchers to consumers agreed that pain has psychosocial consequences and is a
burden to individuals, families and society (for example, through the costs of treatment, lost
employment, decreased productivity, decreased enjoyment and quality of life, and more.)
It was clearly identified that we need to move beyond the biomedical model in treating
Consumer Perspective PAIN AND ARTHRITIS WORKSHOP 7
arthritis pain. The question “how can I be like other children” is more important than which
drugs are available. The working group identified a number of key questions requiring
answers, which are outlined below. These questions should be the focus of future research
into arthritis pain:
• What novel, culturally sensitive intervention models can be developed or are available to
ensure psychosocial issues -- including anger, stress and pain management -- are
adequately addressed from the onset of the illness? Consumers feel that resources for
psychosocial support are inadequate and inappropriate in most communities and we
need to address this immediately. This is because:
Pain is a very personal, individualized experience. Psychosocial issues begin at
the onset of illness and need to be addressed from the beginning;
Psychosocial issues are often left unaddressed due to lack of time and appropriate
human resources (on the part of health care providers);
Short term, immediate issues include anger, stress and dealing with the real pain.
There are also long term consequences, such as depression;
There is a lack of ethically and culturally sensitive services to manage psychosocial
Chronic pain has different consequences for individuals at different points in their
There is a societal responsibility for pain and pain management, due to the socio-
economic impact of pain and the provision of health care services, yet the
responsibility is often left to the individual. Currently, standards of care do not exist
to support people with arthritis.
• Why are lifestyle adjustments so easy to suggest but so hard to implement for the person
• What strategies can be integrated into the workplace for employed people with arthritis
who have pain and fatigue?
• What novel approaches could be developed, or are available, to provide children with
pain and fatigue ways to communicate the consequences to teachers, coaches, and
others, so they can access necessary modifications to succeed at school and play?
• What can we do to increase awareness of arthritis pain, psychosocial issues/problems
and interventions? Currently, there is a lack of awareness.
Consumer Perspective PAIN AND ARTHRITIS WORKSHOP 8
• What are the psychosocial outcomes of arthritis pain? We have good descriptions of how
pain stops, reduces or changes a person’s ability to participate in life, but inadequate
research into this important area. There is a lack of longitudinal studies, for example. We
need natural history and illness trajectory studies that include analysis of long term effect
and the long term benefits of intervention.
• Do psychosocial problems lead to disability or does disability lead to psychosocial
problems? We need to understand how psychosocial issues fit in the causal pathway
between diagnosis and societal outcomes.
• Better (adequate) measures of psychosocial impact is required for both research and for
use in clinical practice.
• The feasibility of measures varies for research compared to practice settings (e.g. short,
widely applicable measures are required in practice).
• Psychosocial issues are only partly addressed in current outcomes and outcome
measures (e.g. psychosocial factors should be part of quality of life (QoL) measures).
• Inter-professional education and models of care need to be developed and evaluated.
While some model programs could be cited by participants, there was a perceived need
to research the effectiveness of these programs.
• More training opportunities are required for health professionals to provide improved
education in the areas of pain and its management: a solution is to add the pain agenda
into existing programs for health professionals and researchers.
NEXT STEPS: HOW DOES CAN FACILITATE ACHIEVING THE SHORT AND
LONG TERM GOALS IN ARTHRITIS PAIN RESEARCH?
• Summarize all research goals from this Workshop and align them into themes; determine
what resonates across the areas and participants; and, set priorities.
• Develop position papers.
• Bring all stakeholders together with researchers in academia and industry for pain
workshops on a bi-annual basis to address a specific question on pain.
• Improve/facilitate contractual agreements between industry, basic scientists and
• Provide financial support for testing of new targets.
• Maintain a databank of consumers willing to be part of a study to identify new targets and
establish the level of risk to which they are willing to be exposed.
• Fund more research into the basic science of pain and for intervention projects through
Requests for Applications (RFAs).
• Seek out new partners who are not currently Canadian Arthritis Network (CAN) members
or partners. Fund, or leverage funds, for novel pain research.
Consumer Perspective PAIN AND ARTHRITIS WORKSHOP 9
• Establish a non-pharmacological research program to facilitate collaborations between
researchers and stakeholders.
• Provide support to facilitate research dissemination (e.g. CAN Knowledge Translation
Strategic Resource Initiative). Research findings need to be disseminated in lay
language for use by patients with arthritis.
• Invite international, non-pharmacological treatment researchers to present findings at
• Participate in the discussion about regulating natural health products.
• Work towards a centralized source of quality information available to all (public, including
patients, researchers and health care providers).
• Put together teams to obtain research funds. Invite key health care providers such as
GPs, psychologists, psychiatrists and social workers to future CAN meetings on this
topic, to ensure their perspectives are shared.
• Sponsor a knowledge translation plan and ensure it happens (e.g. sponsor an information
campaign, create single page fact sheets for broad distribution, facilitate a youth
• Bring stakeholders together to determine their tolerance to various treatments and their
• Prepare a RFA that supports multidisciplinary research on pain measurement.
The pain of arthritis is an unwelcome and debilitating presence for people who experience
it, or live with it, on a daily basis. Arthritis consumers value the opportunity provided by the
Canadian Arthritis Network in bringing us together with arthritis pain experts to discuss this
important issue and search for solutions. We strongly urge CAN to use this Workshop, and
the ideas that emerged from these working groups, to build and maintain a vibrant and
multi-disciplinary pain research initiative that is able to address the whole host of issues
that arise for those of us living with chronic and disruptive arthritis pain.
Consumer Perspective PAIN AND ARTHRITIS WORKSHOP 10