Penney Cowan, Founder & CEO of American Chronic Pain Association (ACPA), charts bringing research to practice for people living with chronic pain from theory to therapy
For people living with chronic pain, this last year of COVID-19 has ironic echoes of what they face every day. To many, COVID has brought loss of income, social isolation, depression, and fear for the future. People with chronic pain experience all these things and have the additional burden of ongoing pain.
People living with chronic pain
With a vaccine, most of us can have hope of a different future. But there is no vaccine for chronic pain. How can the 60 million Americans who live with chronic pain see a path forward?
Over the past decade, research has validated the efficacy of a multimodal approach to pain management and numerous studies undertaken through the Patient-Centered Outcomes Research Institute, established as part of the Affordable Care Act, have highlighted the value of patient engagement in improving the effectiveness of treatments.
Yet moving those learnings from research to patient care can be slow. Clinicians are reluctant to change established practices and payers, who too often determine what care is actually received, will not pay for new approaches. More significantly, people with pain themselves often are not aware of new practices and of the important role they themselves must play in creating a positive outcome.
For over 40 years, the American Chronic Pain Association has worked to provide people with pain with the education, tools and support they need to reduce suffering, improve function, and regain their quality of life. A key goal has been to teach people with pain how to work with their healthcare team to better manage their pain.
Here is some of what we have advocated to help people with pain bring these best practices to life.
Traditionally, people have approached medical care passively. We look to the experts for answers and generally accept what we are told. But people with pain also are experts — in their experience of pain, the impact it has on their function and the goals they have for their treatment.
A recent ACPA study revealed that there can be a gap in how people with pain and their caregivers define success. Clinicians tend to look for the reduction of pain as defined by pain scales while their patients hope for improvement in their ability to function and to enjoy a better quality of life. They want to be able to fish with their grandsons, have dinner out with friends, potter in the garden, or countless other things that have nothing to do with pain scales.
“With a vaccine, most of us can have hope of a different future. But there is no vaccine for chronic pain. How can the 60 million Americans who live with chronic pain see a path forward?”
When people with pain take an active role in their care, helping to set goals and evaluate treatments, both outcomes and satisfaction improve.
Getting involved can also mean taking part in clinical trials and other research into pain management. The ACPA has links to trials and research on our web site at www.theacpa.org or people can enquire at local universities. By bringing their unique experience and expertise to these projects, people with pain can improve future care for themselves and others.
Use a multidisciplinary approach
Chronic pain is complex, and it is unlikely that a single type of treatment will provide adequate relief. Combining a range of treatment modalities, including medication, physical therapy, cognitive behavioural therapy, biofeedback, and others, addresses the many facets of the pain experience and enhances the
Think of a person with chronic pain like a car with four flat tyres. Each type of treatment will put air in one of the tyres, but unless all the tyres are filled, it is impossible to move forward. We encourage people with pain to work with their healthcare providers to build a treatment team, including professionals from several disciplines, and to develop a multimodal approach that yields the best results for the individual. See an animation of the car with four flat tyres concept at https://www.theacpa.org/acpa-car-with-four-flat-tires/
There is no silver bullet for pain; developing a treatment plan will likely be a work in progress for most people. But with the combined efforts of the team, it is possible to reduce suffering, improve function, and enhance the quality of life.
Use your support network
People living with pain often feel isolated. Many feel like they are the only person in the world who has chronic pain. Because pain is invisible, family and friends may not recognise their suffering and even healthcare providers can seem to dismiss it.
It can help to find a support group of other people with pain who understand and can validate the experience. In addition to emotional support, such a group can offer practical advice on everything from how to better manage daily household chores to dealing with insurance issues. Most importantly, they will be living proof that you are not alone — someone else has been where you are and cares about your progress. We can help people with pain find a group or start one in their area. Find out more at https://www.theacpa.org/aboutus/support-groups.
By empowering people with a better understanding of their pain and the skills to take a significant role in its management, we can help theory become therapy.
Founder & CEO
American Chronic Pain Association (ACPA)
Tel:+1 916 632 0922