By Ed Coghlan.

A survey is underway to gauge the quality of care that chronic pain patients are receiving. The survey, prepared by Terri Lewis PhD and being promoted by the National Pain Report and others, is receiving brisk response.

Dr. Lewis, who is a pain patient advocate, is using the survey to present at the July 9 FDA Public Meeting for Patient-Focused Drug Development on Chronic Pain.

“They need to hear what patients are experiencing,” she said.

What is she finding out thus far?

Most of the respondents are over the age of 40—80% of them are women.

“This is prime working and family care age for both men and women,” she pointed out. “The loss of earnings capacity and independence for both sexes in this age group. It puts families into conditions of economic insufficiency and creates crisis conditions for which few are prepared.”

Denial or delay of diagnosis figure prominently in respondent comments.

“This is of great concern as the current administration changes eligibility criteria for health and welfare benefits,” Dr. Lewis said. “There are so many other issues that arise from this – children are thrust into the role of caregivers for impaired parents, individuals and families become isolated by the effect of managing injury and illness, social networks shrink reducing visibility and understanding by the community at large.”

The vast majority of respondents report a profile of illnesses and injuries that meet the definition of Multiple Chronic Comorbid Conditions as defined the Center for Medicare Services. These data are reported down to the county level and grouped as 1, 2, 3, 4, 5, or 6+ chronic conditions that occur together.

“Among respondents, the majority have documented that they are receiving care for between 4 and more than 6 chronic conditions. Many have offered information about the treatments they have received that have failed,” she said.

With this analysis, it will be possible to identify experience trends in receipt of alternative medical approaches for specific medical conditions alone or in groups.

“Identifying what works or doesn’t work is important to the national discussion,” she said.

While nearly one thousand people have filled out the survey, she is hoping for many more to participate. If you haven’t already done so, you can by clicking on this link. Dr. Lewis will close the survey on June 17 in order to give her and her team time to tabulate the results in advance of the July 9 meeting.

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