NOVEMBER 2019 CHRONIC PAIN ASSESSMENT: PATIENT PERSPECTIVES This paper was made possible by support from: Grünenthal, GmbH CONTENTS Introduction ..................................................................................................... 2 Chronic Pain Survey Findings ........................................................... 5 Recommendations Based on Patient Perspectives ........ 11 References ...................................................................................................... 14 Resources ........................................................................................................ 16 AUTHORS BRAND John Bothmer, PhD JamPieO BSreIsTliInO, PNhIDNG AND Grünenthal BresTlinA CRoGnsEuTlti nMg ALLRCKETS Jim Broatch Ellen Coleman Reflex Sympathetic Dystrophy VOZ Advisors Syndrome Association Nicole Hemmenway Barby Ingle US Pain Foundation International Pain Foundation Allison Moore Cindy Steinberg Hereditary Neuropathy Foundation US Pain Foundation Cynthia Toussaint Christin Veasley For Grace Chronic Pain Research Alliance Page 01 Impact of Chronic Pain A recent Voice of the Patient Report from the INTRODUCTION Food and Drug Administration (FDA) confirmed that the health effects of chronic pain are pervasive and wide ranging for patients. [2] Individuals who live with daily unrelenting Acute pain is a normal sensation triggered in the widespread pain experience numerous nervous system to alert you to possible injury and comorbidities, including increased levels of the need to protect yourself. [1] Acute pain comes anxiety, depression, decreased quality of life, on quickly and can last a moment or a few sleep disturbances, fear of further pain and months. Chronic pain is different; chronic pain disability, and withdrawal from social and persists. By definition, chronic pain is pain that pleasurable activities. [2, 13] Data support these remains for more than three months or lasts more sentiments. Studies have shown the correlation than one month beyond the “normal healing” time between chronic pain and reduced physical for the underlying cause of the pain. [2] But that activity; [12, 14] and that the intensity, duration, or doesn’t capture the wide-reaching personal, location of chronic pain influences a patient’s social and psychological impacts, as well as physical performance, diminishing their physical national economic consequences of chronic pain. activity and even causing disability. [12, 15] Health- Chronic pain affects 50 - 100 million adults in the related quality of life (HRQoL) assessments United States, [3, 4] and the numbers are rising. [5] further show the consequences of chronic pain on These estimates do not account for certain the mental and physical aspects of a patient’s life populations, including pediatrics, or military and and the detrimental effects to the families of elderly residing in long-term health care facilities; patients. [16, 17] When comparing the HRQoL of yet they translate to an estimated economic cost acute pain and chronic pain patients with that of from $560 to $635 billion for necessary health pain-free individuals, chronic pain patients care and lower worker productivity. [6] achieved worse scores in all the dimensions of HRQoL compared to individuals who suffered Chronic pain can occur in nearly any part of the from acute pain or had no pain. [12] body and nearly everyone is susceptible. Chronic pain manifests in different ways [1, 2] and there is "No doctor I have seen for my chronic pain an essential difference between pain as a has ever asked me about the profound effect symptom and chronic pain. [7] As a symptom, pain pain has on every other important aspect of results from an illness or injury; chronic pain refers my life.” – Chronic Pain Patient to a disorder or disease process that results from changes at cellular and molecular levels. [7, 8] Chronic pain interferes with everyday activities, Classifications have been used to separate such as family and home responsibilities, chronic primary pain conditions, which exist recreational activities, work and sleep. [17, 18] independent of another disorder, from chronic Sleep disturbances such as shorter sleep duration secondary pain conditions, where at least initially or poor sleep quality are common. Sleep chronic pain is due to conditions such as cancer complaints present in 67-88% of chronic pain or its treatment. [9, 10] But in either case, and disorders, [19, 20] and at least 50% of individuals regardless of its etiology, chronic pain touches all with insomnia suffer from chronic pain. [20, 21] aspects of patients'* lives; negatively affecting Sleep debt can also increase levels of stress and their daily activities, physical and mental health, make it difficult for patients to perform simple family and social relationships, financial stability tasks at home and in the workplace. [12, 22] and their interactions in the workplace. [11, 12] Decreased productivity, reduced efficiency, and early retirement related to chronic pain present a *The word ‘patient’ has been used throughout the document for simplicity. The authors acknowledge that individuals Page 02 living with pain may or may not view themselves as a ‘patient.' burden at least as great as established health fear patients need opioids but are wary of care priorities. prescribing them. [28] Family, social and sexual relationships are also Complex Nature of Chronic Pain impacted by chronic pain. Patients often One factor that influences the physical, personal experience social isolation and loneliness and and societal impacts of chronic pain is that the report that their condition has prevented them complexity of the condition is not generally from attending social or family events [12, 23] and understood by most people. Focus often to have less frequent contact with family. [17] remains on the original problem that caused the Decreased contact can result from family pain, and not on the fact that, for some, the pain members being unable to cope with the impacts itself is the remaining problem. [28] Although of chronic pain on their family unit, which leads to primarily considered a disease of the nervous avoidance or abandonment of the patient. Or, system, often worsening over time, chronic pain with the physical decline patients may is often a multi-system, multi-symptom disease experience from their chronic pain and the that can involve the musculoskeletal, endocrine, dependency that can cause, patients may choose immune, and inflammatory systems. [3, 29] These to avoid interactions with members of their family systems interact and collectively comprise a or social group to not be a burden. [12, 24] The defensive biological response to injury. [29] Yet, consequence of chronic pain on sexual despite the multi-system changes associated relationships is common but often overlooked. with chronic pain, signs and symptoms may be Chronic pain may interfere with sexuality because subtle and difficult to interpret. Individuals of the pain itself, or other factors associated with experience symptoms differently based on their chronic pain, including mood, decreased sex social and physical environment, and the unique drive, medications or stress. [25, 26] interactions of genetic, epigenetic and past experiences that characterize each person.[29] In addition to the physical and personal impacts This multi-system context can result in diagnosis of chronic pain, patients often face societal by exclusion and necessitates a stigma and discrimination when reporting pain, multidimensional approach to pain assessment particularly when they do not respond readily to and treatment. treatment. [3] They are judged simply for having a common, complex, health condition with no visible signs – they don’t ‘seem’ sick. Another "Generalizations are the biggest misconception factor that contributes to the stigma of chronic among my health care providers.” pain is that nearly everyone at some point – Chronic Pain Patient experiences some degree of pain, and they equate an acute pain experience with which they Pain Assessment are familiar to that of chronic severe pain. [3] Comprehensive pain assessment and re- Employers, family members, friends and even assessment that evaluates both pain and non- health care providers question the legitimacy of a pain symptoms (i.e., sleep, mood, cognition, patient’s chronic pain and treatment needs. [2, 27] physical and social function) are essential in all The stigma associated with having chronic pain stages of managing chronic pain. [30] The has been made worse by the opioid crisis. [28] importance of assessment for patients goes The unintended consequences of state and beyond diagnosis, it provides information about national policies enacted to address opioid abuse the severity of the condition, guides treatment and overdose cause patients to feel under attack decisions and allows clinicians and scientists to and perceived as ‘drug-seekers’ or unable to monitor the course of disease and to quantify access appropriate treatments because doctors treatment effects. [31] The development of Page 03 devices and techniques as objective pain assessment tools. In 1948 Kenneth Keele, an measurement tools is ongoing and holds English physician, developed a simple descriptive promise, [32, 33] but standardized self-reported scale which categorized pain from 0 (none) to 4 assessment scales and tools remain the standard (complete). [37, 38] Around that same time of care across clinical practice. When utilized Hewer, working with Keele,