U.S. Pain Foundation was one of six patient advocacy groups to collaborate on a survey to understand patient awareness of and satisfaction with chronic pain assessment methods. More than 2,700 people living with a variety of chronic pain conditions responded, and the results revealed that the impact of chronic pain on patients’ lives is not adequately, consistently, or uniformly measured.

“Our findings reveal a vast area for improvement in the way chronic pain is assessed and subsequently managed by healthcare professionals,” said Cindy Steinberg, National Director of Policy an Advocacy for U.S. Pain Foundation. “Better assessment tools and a wider range of questions on the part of healthcare providers, if appropriately acted upon by healthcare practitioners, could lead to significant improvements in the management of patients’ pain.”

The survey explored 18 specific life aspects, such as the ability to sit, stand or move, level of energy/fatigue, ability to concentrate, and amount and quality of sleep. Respondents were asked which life aspects healthcare providers routinely ask about versus which aspects they would like to be asked about. On every measure except for severity, there were large gaps with healthcare providers exploring these issues significantly less often than patients desire.

When survey participants were shown eight established assessment tools and asked how often their healthcare providers use these tools when evaluating their pain, with the exception of the “Brief Pain Inventory” tool, they selected “never” most often followed by “not sure.”  When asked if the established pain assessments were useful, 45 percent of respondents answered “somewhat” across all the tools and only 10 percent answered “completely” useful.  When asked if they thought the established pain assessments fully capture the chronic pain experience, the majority indicated “no” (35 percent) or “not sure” (47 percent) on average across all the pain scales.

Almost all (90 percent) respondents indicated that changes are needed to the way their healthcare provider evaluates their pain and more than half (54 percent) said they wanted to work with their provider to decide which questions and what chronic pain measurements are best for them. Through the analysis of this data, other data collected as part of the study, as well as open ended questions of participants, the study authors offer a number of patient-driven recommendations to improve chronic pain assessment.  You can access the full paper here.

The survey was created with support from Grünenthal and VOZ Advisors.