What is Largest Chronic Pain Patient Survey Showing?

For the last several months, The National Pain Report has been promoting the efforts of Terri Lewis’ to calculate the impact of changes in chronic pain treatment on the patient population. Nearly 4,000 people have filled out the survey. If you haven’t you can do by clicking here.

Here’s more on what the survey is showing:

Seventy percent (70%) report that their health care has either worsened or they have lost support entirely. Twenty-five (25%) of individuals have lost access to a primary care provider. Forty percent (40%) lack access to specialty care for disease management. Of those who have lost access to care management, 63% report that the burden of self-managing their illness has increased, reliance on over the counter medications has increased with little effect, feelings of hopelessness have increased, and family relations are excessively strained. Many express concern about the long term use of over the counter analgesics and the apparent disregard of potential risks by their physicians.

Forty percent (40%) are unhappy with their insurance carrier for reasons that are unique, complex, and reflect the various differences in plan implementation across the states. This, together with comments about integration with financial resources and public benefits programs requires close scrutiny – I am still working to understand the influence of external factors on this area of responses. It appears that the loss of economic basis imposed by the onset of chronic disease imposes significant limitations on resources to manage care. Roughly 70% of respondents are living at or near poverty levels. This limitations on choices and increases dependence on systems of care that are not operating consistently or optimally across the states.

Suicidal ideation and action are ever present in the pain community. Two hundred sixty-seven (267) persons thoughtfully reflect upon their suicide stories; 89 persons shared the story of a friend or family member who ended their life, while the balance of respondents describe the conditions under which they will take action to end their life. I have not yet teased out the factors that correlate to respondent characteristics. Many comments reflect loss of care support, concern for burden on care partners, and running out of energy and personal resources for this difficult race.

Thirty-five (35%) of respondents have changed pharmacies one or more times in the last two years – either because of pharmacy plan changes to formularies, out of stock issues, errors, or because the pharmacy stopped stocked necessary medications. Limitations of mobility, transportation, and impact of disability require reliance on friends or family to handle filling of scripts. The pharmacy crawl causes extra stressors as many report feeling like they are treated like criminals upon presentation of a legitimate prescription.