The Chronic Pain Research Alliance (CPRA), an initiative of TMJ Association, in collaboration with the U.S. Pain Foundation and the National Fibromyalgia and Chronic Pain Association, recently conducted a survey to assess how those living with chronic pain disorders, including temporomandibular disorders, feel about current pain research efforts. The CPRA is using the results of the survey, which are summarized in this article, in its advocacy work to advance pain research efforts for those with multiple pain conditions.
Fifteen hundred people of all ages, the majority of whom were women between 35 and 65 years old, responded to the survey. Using the definition of chronic pain as pain experienced on at least half the days for six months or more, half of respondents reported their pain developing between the ages of 25 and 44. Nearly half also reported having chronic pain for 15 or more years. As seen in the figure, most respondents reported pain in multiple areas of the body, with back, neck, joint and widespread body pain, being the most frequently reported.
When asked about patterns of pain severity, the majority (40 percent) reported that their chronic pain progressively worsened and spread to other areas of the body over time. The second most common pattern, reported by 22 percent of respondents, was pain that fluctuated in severity and spread to other areas of the body. Other patterns and their prevalence can be seen in the figure.
Seventy (70) percent reported visiting four or more health care providers for their pain conditions. Of the 90 percent who were currently being treated by a health care provider for chronic pain, more than one specialty was selected by a number of respondents, with the most common being internist or primary care provider (60 percent), pain management specialist or neurologist (50 percent), rheumatologist (30 percent), physical medicine and rehabilitation specialist (10 percent) and orthopedist (10 percent).
Only six (6) percent of respondents reported that their clinicians spoke to them about participating in a research study. Similarly, only 20 percent said that a clinician recommended a new treatment for them resulting from a research study that he/she read. When asked about the level of confidence respondents had in their pain clinicians staying up-to-date on new research findings, 40 percent were not very confident, 36 percent reported being somewhat confident and 18 percent were very confident. Sixty (60) percent of respondents reported that of the clinicians previously consulted for pain care, either none or few stayed current with new pain research findings.
The overwhelming majority (95 percent) of respondents said that they had never participated in any type of research study on chronic pain, although 80 percent were somewhat or very willing to do so. Of the four percent who did participate in a research study in the past, 60 percent reported that it was a positive experience for them. Of the 20 percent for whom it was not a positive experience, reasons stated included:
When asked if respondents had ever attempted to look up information on research studies that they could participate in, only 30 percent reported having done so. Of those who did, 40 percent responded that they were successful in finding that information.
When asked about the words that come to mind when thinking about a future where pain research funding is either decreased or increased, the overwhelming majority responded with the words ‘hopeless’ and ‘hope,’ respectively. Other words frequently reported are shown in the images below, with those most frequent appearing in larger text size.
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