Establishing Recognition for the Chronic Pain Community
Life-consuming pain afflicts millions, yet lack of systematic medical recognition of the disease as a distinct diagnosis has hindered research funding and treatment progress. An International Association for the Study of Pain initiative is changing all that.
Imagine a family member who battles cancer—only to face lingering pain in remission. Or think of a new mother who still experiences pain a year after Caesarean delivery. Chronic pain is an invisible yet life-consuming condition that affects an estimated 116 million Americans. According to the Centers for Disease Control, patients with chronic pain experience up to 70 percent greater mortality risk.
Globally, musculoskeletal pain conditions are among the leading causes of disability and are often linked to mental and behavioral conditions such as depression and anxiety. The impact on society is widespread, with numerous studies linking chronic pain to healthcare costs—an estimated $635 billion annually in the United States—and lost productivity. Yet despite the sometimes-crippling impact of pain on individuals and their communities, funding for pain research has been historically limited. As a result, chronic pain has not been systematically recognized as a disease in its own right—leaving patients with limited access to treatment and insurance coverage, making it difficult for researchers to quantify the prevalence and burden of pain, and limiting opportunities for clinicians to develop evidence-based and cost-effective treatments.
With growing and clear evidence of the global prevalence and burden of pain, the International Association for the Study of Pain and its members recognized an opportunity to improve how pain is assessed and, ultimately, reduced.
In 2012, IASP launched its Task Force for the Classification of Chronic Pain to develop a new classification that defines seven categories of chronic pain:
- chronic primary pain
- chronic cancer pain
- chronic post-traumatic and post-surgical pain
- chronic neuropathic pain
- chronic headache and orofacial pain
- chronic visceral pain
- chronic musculoskeletal pain
Chronic primary pain, defined as chronic pain that is characterized by significant emotional distress or functional disability, is recognized as a health condition in its own right. Examples include chronic primary low back pain, Fibromyalgia syndrome, and chronic migraine. Chronic secondary pain is chronic pain that occurs as a symptom of an underlying disease—for example, chronic neuropathic pain and chronic cancer-related pain. In these cases, the chronic pain diagnosis is assigned as a co-diagnosis.
IASP tapped into scientific rigor, the expertise of thought leaders in the field, and nearly 100 partner organizations to develop the new classification. Between 2012 and 2019, experts from around the world developed the classification definitions, applied the seven primary pain codes in clinical settings, and completed a three-month field test in the context of World Health Organization field testing efforts. Further, in 2017, IASP developed an online learning platform to introduce international pain experts to the new classifications and provide them case studies.
In May 2019, WHO approved the classification, ICD-11, and the new diagnoses will take effect worldwide for health reporting in January 2022. The classification provides a uniform way to capture data to provide diagnosis and validity to chronic pain patients around the world. According to WHO, understanding what causes sickness and death “is at the core of mapping disease trends and epidemics, deciding how to [program] health services, allocate healthcare spending, and invest in improving therapies and prevention.”
For patients, this new classification validates their pain, provides reassurance that they aren’t alone, and ensures that there are clinicians with the knowledge and tools to help them find the right treatment. Among other impacts, formal recognition of chronic pain as a discrete diagnosis means:
- Chronic pain is now noted as requiring special consideration and treatments, enabling physicians to proactively treat their patients and potentially offset long-term costs.
- Chronic pain sufferers and their healthcare teams can track pain as a diagnosis or co-diagnosis in an underlying disease.
- Critical data such as cost information, treatments, and societal impact of pain will be made more readily accessible—possibly enabling better measurement and reduction of the burden of pain without undue burden on government agencies.
“If pain is better recognized as a disease state among healthcare systems, our members will have better data to advance research to better understand the true magnitude of the problem and consequently to improve the provision of advanced treatment options.” —Professor Rolf-Detlef Treede, IASP-WHO Liaison, Chair of Neurophysiology, Centre for Biomedicine and Medical Technology, Mannheim, Heidelberg University.
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