Pain affecting daily life often goes undiagnosed

Many who experience pain often don’t have a diagnosis, according to a new study from The University of Texas at Arlington. The study found that there is a significant gap between symptoms patients report and what actually appears in their medical records.

“What this study shows is that a significant number of people experience pain that interferes with their work and daily activities, yet the healthcare system does not capture a reason for that pain,” said Feinuo Sun, Ph.D., assistant professor of kinesiology at The University of Texas at Arlington. “That mismatch represents a real problem.”

Undiagnosed pain can lead to delayed or missed treatment, worsening health conditions, higher long-term healthcare costs and reduced productivity. “Because pain was not classified as a disease during the years we studied, many people likely had their pain overlooked or inadequately documented, even when it significantly affected their quality of life,” Sun said in a news release.

Sun and her colleagues analyzed four years of federal health data and found that at least 21 million U.S. adults reported pain that disrupted their work or household activities, despite having no pain-related condition in their medical records. The findings were published recently in PAIN, the Journal of the International Association for the Study of Pain.

Pain remains one of the most difficult conditions to diagnose, given its subjective nature. In 2022, the World Health Organization updated its International Classification of Diseases to recognize chronic pain as a disease.

The study analyzed data from 2016 to 2019, a period when pain was classified as a symptom rather than a disease in the healthcare system. Researchers performed cross-sectional secondary analyses of the Medical Expenditure Panel Survey, which is a survey of families and individuals, their medical providers, and employers conducted by the Agency for Healthcare Research and Quality.

The primary study outcome is being undiagnosed, which researchers determined by the absence of diagnoses for pain among participants reporting pain-related interference in daily activities. Researchers assessed answers to question SF36 pain in MEPS, with 10,954 people reporting any pain-related interference within 4 weeks of the interview and 4,902 people reporting at least moderate pain-related interference.

The study found that during the time period of 2016 to 2019, 30% of adults who reported pain affecting their daily activities had no formal diagnosis of a common pain condition. Using a broader definition of “diagnosed,” which includes conditions where pain is a secondary symptom, 9.3% of those reporting pain, or about 21.1 million adults, still lack a diagnosis.

Researchers also found that younger and middle-aged adults, males, racial and ethnic minority groups, foreign-born populations, people without insurance, and people with better perceived health are more likely to have their pain undiagnosed.

“Our results also show that compared to non-Hispanic Whites and U.S.-born people, racial and ethnic minority groups, especially non-Hispanic Blacks and non-Hispanic Asians, and foreign-born individuals are more likely to have undiagnosed pain, which may reflect structural barriers, inadequate treatments, and limited healthcare resources these populations face,” researchers wrote.

Researchers said that one limitation of the study is how they assessed undiagnosed pain, saying that people’s reported pain could be because of a different problem than their diagnosed conditions. Another limitation is that undiagnosed pain reported in this study may be overestimated and would likely be lower if longer-term medical history data were available.

Additionally, the Medical Expenditure Panel Survey asks only about the level of pain interference but does not collect information on pain intensity or duration, limiting researchers’ ability to assess pain that limits activities. Future research, they said, is needed to examine more varieties of self-reported pain measures and different operationalizations of undiagnosed pain.

“Our findings underscore the need for improved access to care and better patient-provider communications in those suffering from underdiagnosed pain,” researchers wrote.