Publications
APS Bulletin • Volume 15, Number 2, Spring 2005
President’s Message
When Is a Person with Chronic Pain a Patient?
Dennis C. Turk, PhD
Quick, what thoughts come to mind when I ask you to think about a “typical” chronic pain patient? Check your list against characteristics cited in the literature for patients who seek treatment by pain specialists. Compared to community samples of people with chronic pain, pain clinic samples are more likely to report constant pain, high levels of emotional distress, functional impairments, opioid medication consumption, work-related injuries, frequent use of the healthcare system, and prior surgeries (Crook, Tunks, Rideout, & Browne, 1986). Patients are individuals who are awaiting or are already under medical care and treatment. According to Webster’s Tenth Collegiate Dictionary (1996), they are people who are “acted upon.” Thus, diabetics are “patients” when in the clinic, but outside the clinic setting are they “diabetic patients” or rather “persons who have diabetes”? Webster’s defines person as “a human individual.” A patient is also a human individual, both in a healthcare provider’s office and when not being treated directly. Patient is therefore a subset within the broader category of human individuals. Yet many people with chronic pain identify themselves as chronic pain patients. So when is a person with chronic pain a patient, and should we help shift their perception of themselves as people rather than patients? We should consider how healthcare providers contribute to the patient versus person perspective.
It is estimated that 75–150 million people in the United States have a chronic pain disorder (Elliott, Smith, Penny, Smith, & Chambers, 1999; Harstall, 2003). According to MarketData Enterprises (1995), 2.9 million (2.5%–5%) people seek treatment by pain specialists. What do we know about the other 72–147 million people with chronic pain who do not seek treatment by pain specialists? An unknown proportion of those have learned ways to adapt despite the presence of persistent pain.
Many rehabilitation programs focus on helping patients adapt to becoming people with persistent pain, not patients, when there is no cure. Although there have been efforts to identify predictors of successful outcomes (e.g., Jensen, Roman, Turner, Good, & Wald, 1999; Kerns & Rosenberg, 2000), we do not have sufficient evidence to draw conclusions with confidence. Moreover, we have little information about how patients treated by pain specialists compare to community samples with pain that are not actively seeking treatment, at least not by pain specialists.
To date, there are only a few small-scale, qualitative epidemiological studies that include in-depth interviews and first-person accounts about community samples of people with experiences of pain (e.g., Price, 1994). Some research has begun to focus on acceptance and moving on with life despite pain (e.g., McCracken & Eccleston, 2003). We need to know more about how this comes about. To date, this research has focused on clinic samples, although exceptions are beginning to appear (e.g., Viane, Crombez, Eccleston, Devulder, & DeCorte, 2004). Although a number of studies have examined coping and adaptation by community samples of people with pain (e.g., Affleck et al., 1999), few make direct comparisons with clinic samples (e.g., Bradley et al., 1994). Often the measures used are sufficiently discrepant to prevent firm conclusions (e.g., Nicassio, Schoenfeld, Radojevic, & Schuman, 1995; White, Speechley, Harth, & Ostbye, 1999).
So how do people with significant levels of pain adjust despite physical impairments and aversive sensations that we might all agree are significant? Financial resources, religious faith, and spirituality have all been postulated as important mediators of adaptation. There has been some research on the role of social support (e.g., Romano, Turner, & Jensen, 1997), although once again, this research has focused more on clinic samples. Although we might conjecture that coping with pain and disability is easier without financial worries, little is known about the contribution of financial resources to adaptation to chronic pain. The role of religious faith and spirituality is also virgin territory. Although a significant majority of the U.S. population purports to be religious, systematic studies of the importance of faith and prayer for people with chronic pain and even pain patients are largely nonexistent.
Because research has not provided us with all the answers we need to treat chronic pain patients effectively, it is worthwhile to ask targeted questions. What differentiates pain patients from the persons with pain? What factors contribute to pain patients’ ability to live effectively despite pain? What can we learn from studying those who have been able to transcend their experiences to help in the design of interventions? How do provider-patient interactions affect how patients live with pain?
Focusing solely on pain clinic samples provides a biased view and tells us little about how the majority of people cope with and adapt to their pain experience. Studies to address these questions are timely and potentially of great value. In the years to come I hope that APS members will take the lead in investigating the questions that I have posed and that the information obtained will guide the development of a new way of thinking about the patients we see in our clinics, those who do not seek care by pain specialists, and more broadly the people with pain who exist and spend the majority of their lives outside the clinical contexts in which we most often see them.
References
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