Chronic Pain Patient Survey 2019

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CERGM completed it’s first general survey of chronic pain patients on August 2, 2019. There were 1,123 responses, after excluding duplicates and abandoned survey results, there were 813 completed survey responses. The survey will remain open for another 45 days and if there are significant changes in the results, an update will be posted.

 

Gender breakdown of respondents. 

Figure 1 - Chronic Pain Patient General Survey 2019 - Gender
Chronic Pain Patient General Survey 2019 – Gender

 

83.5% of respondents were older than 40 which is significant when considering that these are peak earning years for this age group, a time when most are making their greatest contributions to savings and retirement or putting children through college. It also reflects what is already known, that most chronic conditions occur in older aged individuals. When compared to overdose data provided to the CDC, the highest incidence of overdose deaths occurs in the 25-44 age group, debunking claims that treating chronic pain with opioids is a gateway to drug abuse and illegal opioid deaths. 

2019-chronic-pain-patient-general-survey-age-groups
2019 Chronic Pain Patient General Survey – Age Groups

 

Respondents were asked to give their family status before and after becoming a chronic pain patient. We wanted to know if having a chronic pain condition and being treated with opioids was disrupting family units. While there was a small decrease in married with children status to single with children, the change was less than expected and less than eluded to by anti-opioid proponents. Instead this data indicates relationships are weathering the challenges facing chronic pain patients. This is very important when considering claims that treating pain with opioids is a gateway to drug abuse and overdose deaths. Knowing that abuse results in loss of employment and disruption of families, these data points indicate that families are remaining stable despite their treatment with opioids.

2019-Chronic-Pain-Patient-General-Survey-Family-Status-Pre-Chronic-Pain-Condition
2019 Chronic Pain Patient General Survey – Family Status Prior to Chronic Pain Condition

Following the development of a chronic pain conditions, Married and Separated with Children rose only 1.2%, Married and Separated without Children 0.4%, Single with Children rose 3.4% and finally Married with Children dropped from 46.4% to 37.7% showing some pressures on family life following a parent developing a chronic pain condition. We will get more specific on details around this data point in future surveys.

2019-Chronic-Pain-Patient-General-Survey-Family-Status-Post-Chronic-Pain-Condition
2019 Chronic Pain Patient General Survey – Family Status Post Chronic Pain Condition

 

Based on the age groups that responded, the breakdown for types of medical benefits for the most part falls in line with nationals values, with the exception of Medicare benefits. The national average for Medicare is around 15%, in this survey nearly 42% of respondents are taking Medicare benefits, indicating that many above the age of 40 but below 65, are drawing on benefits years before they should. The national average for employer medical benefits is 71%, our survey shows 32% indicating a large number of CPP are no longer working. 

2019 Chronic Pain Patient General Survey - Type of Medical Benefits
2019 Chronic Pain Patient General Survey – Type of Medical Benefits

 

Of the 813 respondents, 66% have been a CPP more than ten years, 16% for seven to ten years, for a total of 82% who have been a CPP for more than seven years.

2019-Chronic-Pain-Patient-General-Survey-Length-of-Time-as-a-CPP
2019 Chronic Pain Patient General Survey – Length of Time as a Chronic Pain Patient

 

As expected, Pain Specialist are the largest group providing medical care for CPP with 27.4% seeing a Primary Care Provider or General Practitioner. The PCP group was higher than expected, considering the fallout from the CDC Guidelines and the stigma associated with treating chronic pain patients. 

2019-Chronic-Pain-Patient-General-Survey-Service-Providers-Treating-Chronic-Pain-Patients
2019 Chronic Pain Patient General Survey – Service Providers Treating Chronic Pain Patients

 

As expected, the majority of those seeing a pain specialist are doing so because they are referred by their PCP. This is due in part to an inaccurate interpretation of CDC guidelines but also because PCP’s believe they are more likely to be targeted by law enforcement or a medical board if they treat CPP. A small sample survey done by Dr. Pooja Lagisetty, from the University of Michigan Medical School and the VA Ann Arbor Healthcare System, covers the primary reasons why PCP’s have stopped treating chronic pain. Some states have Medical Board Regulations requiring a referral to a pain specialist under certain conditions. Surprisingly only 3.7% see a pain specialist because their insurance provider requires it. Other limiting factors are the availability of providers in a geographical area, requiring some patients to drive in excess of 200 miles round trip to see a specialist.

2019-Chronic-Pain-Patient-General-Survey-Reason-for-using-a-Provider
2019 Chronic Pain Patient General Survey – Reason for using a Provider

 

The next data point was a surprise, considering the number of CPP force tapered or terminated. We were expecting larger numbers for people taking opioids less than daily. While forced tapering numbers are still high, it appears providers are not terminating as many as we expected, just lowering the dosage amounts, but this could also be survey bias based on the limited number of respondents who found the survey.

2019-Chronic-Pain-Patient-General-Survey-Opioid-Prescribing-Frequency
2019 Chronic Pain Patient General Survey – Opioid Prescribing Frequency

 

This and the previous data points support the view that providers are lowering dosages more than they are terminating opioids for patients. 41.6% of providers are either prescribing less than 50 MME per day or none at all. 58.5% are prescribing more than 50 MME per day, nearly 30% are prescribing more than 90 MME per day.

2019-Chronic-Pain-Patient-General-Survey-Providers-Prescribe-MME-of-Opioids
2019 Chronic Pain Patient General Survey – Providers Prescribe MME of Opioids

 

Following the CDC Guidelines, some CPP had reported that providers were bringing them in for office visits more often, as in twice monthly. This data does not support this conclusion.

2019-Chronic-Pain-Patient-General-Survey-Office-Visits-Required
2019 Chronic Pain Patient General Survey – Office Visits Required

 

Likewise there were reports that providers were performing urine drug screens with greater frequency as often as twice monthly, this data does not support that. Per CDC guidelines on patients taking opioids longer than one year, the standard of care is urine drug screens is every 6-12 months.

2019-Chronic-Pain-Patient-General-Survey-Urine-Drug-Screens-Required
2019 Chronic Pain Patient General Survey – Urine Drug Screens Required

 

Patrons provided a view of provider prescribing policies in this next data point. The fact that this data correlates well with what CPP are receiving in opioid treatments, makes it interesting but not much more than that.

2019-Chronic-Pain-Patient-General-Survey-Provider-Prescribing-Policy
2019 Chronic Pain Patient General Survey – Provider Prescribing Policy

 

One of the first recommendations from the CDC prior to its 2016 Guidelines was to discourage the use of sedatives and anti-anxiety agents with opioids, citing the higher risk for respiratory depression. Far from a warning, the actions by prescribers have significantly reduced this practice for CPP, placing a greater hardship on them for managing the complications of under treated pain. While daily use in combination with opioids is prudent in some cases, completely eliminating their use is another issue. Some have argued that high profile celebrity deaths have contributed to this results, maybe but unlikely. It’s prudent to assume that like opioids, sedative and anti-anxiety agents are being withheld due to prescriber fears more than any other reason. Still, small infrequent doses for legitimate medical need should be looked at closer, as many CPP suffer severe insomnia further complicating quality of life and opportunities for employment.

2019-Chronic-Pain-Patient-General Survey-Prescribing-Sedative-Anti-Anxiety-Agents-with-Opioids
2019 Chronic Pain Patient General Survey – Prescribing Sedative Anti-Anxiety Agents with Opioids

 

We asked patrons to rate how honest they believe their providers are when providing medical care. Having data prior to the CDC Guidelines would make this data point more relevant, still the results indicate an erosion of trust between provider and patient.  This is probably the worst overall element of opioid hysteria caused by a crack down from law enforcement on prescribers. Prescribers need to be able to make a living, yet feeling that they have a gun pointed to their head on how to practice, many have taken up deception and deceit in dispensing medical care with 70.3% of respondents indicating that providers are less than honest with them all the time.

2019-Chronic-Pain-Patient-General Survey-Provider-Honesty-with-Patients
2019 Chronic Pain Patient General Survey – Provider Honesty with Patients

 

Understanding that the provider has all the power in the provider-patient relationship, we asked survey respondents how often they are honest with their providers?  Keep in mind that many patient with 10 and 20 years of compliant medication use are being pressured regularly to reduce dosages even further, often in the face of irrational justifications for doing so. In response to this I was surprised to see that more than half of respondents remain honest with their providers even though they are not getting the same in return. 

2019-Chronic-Pain-Patient-General-Survey-Patient-Honesty-with-Provider
2019 Chronic Pain Patient General Survey – Patient Honesty with Provider

These two previous data points should raise concerns for government and healthcare providers. Consider these facts, medical patients own their bodies, they are not the property of anyone else. Secondly patients pay for the medical services they receive, either through the taxes they have paid or in payroll deductions for insurance benefits. And third, regardless of the consequences, good or bad, patients must live with the outcomes providers make available to them.

Under such circumstances are the current policies of paramilitary raids on physicians, forced restrictions and reductions in medicine for 20 million CPP justifiable to address an overdose problem primarily occurring with 2 million drug abusers? All current evidence now available indicates that the opioid overdose crisis is an illegal opioid problem not a prescribing problem. And while anti-opioid proponents argue that prescription opioids have been a gateway for illegal opioid abuse, no one has definitively connected the dots between these statements to justify the actions which have been taken. Meaning, the current efforts of attacking doctors and CPP is a government experiment, one which is failing to produce the desired results and is failing to prove the premise on which it is based. In the meantime, millions of American’s suffer at the hands of such misplaced presumption.

 

In light of these facts, the next data points on forced tapering or termination address the scope that such policies have had on the chronic pain community. Only 25.8% of respondents report medication levels which have remained unchanged or have been raised in the two years following the CDC Guidelines. With 70.7% reporting they have been forced tapered or terminated from a dosage they were stable on. 

2019-Chronic-Pain-Patient-General-Survey-Forced-Tapering-or-Termination
2019 Chronic Pain Patient General Survey – Forced Tapering or Termination

 

When the respondent was asked how they were tapered or terminated, the results were surprising, showing a callous disregard of compassion or concern for patient safety. Under these circumstances is it any wonder patients no longer trust prescribers.

2019-Chronic-Pain-Patient-General-Survey-How-Provider-Forced-Tapered-or-Terminated
2019 Chronic Pain Patient General Survey – How Provider Forced Tapered or Terminated

 

Further stoking the flames of resentment and anger were the consequences respondents suffered from a forced taper or termination, with 63.6% reporting an event which added to existing complications or the lose of quality of life. 29.6% considered suicide seriously enough to write a letter or note to be left behind for family, while 3.8% suffered an event which resulted in hospitalization.

2019-Chronic-Pain-Patient-General-Survey-Consequences-of-Forced-Taper-or-Termination
2019 Chronic Pain Patient General Survey – Consequences of Forced Taper or Termination

 

Respondents were also asked to assess the consequences of a forced taper or termination on their ability to find and maintain employment. Only 15.4% responded positively with no impact on their ability to find and maintain work. While 10.8% were forced to take lower paying jobs and 73.8% are no longer employable. When compared to the type of medical benefits used by respondents, there is a noticeable increase in the number of individuals now on Medicare and Medicaid as a results of the tactics used in combating the opioid crisis. And with most of these in the 51-65 age group, these are individuals with families who should be at their peak earning potential but have been forced out of the job market by current policy.

2019-Chronic-Pain-Patient-General-Survey-Employment-Consequences-of-Forced-Taper-or-Termination
2019 Chronic Pain Patient General Survey – Employment Consequences of Forced Taper or Termination

 

When asked to identify the cost of a forced taper or termination that resulted in a loss of employment or a lower paying job, the results were equally as surprising with 59.7% having a loss in excess of $30K per year, 34.3% with a loss in excess of $50K per year. Despite such damage, families have been resilient with most who are married with children maintaining their relationship through these difficulties.

2019-Chronic-Pain-Patient-General-Survey-Financial-Cost-of-Forced-Taper-or-Termination
2019 Chronic Pain Patient General Survey – Financial Cost of Forced Taper or Termination

 

Not surprisingly, when asked if respondents felt as though their chronic pain was under treated, 86.6% answered in the affirmation. A questions the survey should have included but did not, would have been to ask respondents if they felt they could return to gainful employment if their pain was properly treated. In the comments and responses from patrons, some stated that they could work if their pain were under control

2019-Chronic-Pain-Patient-General-Survey-Is-Chronic-Pain-Under-Treated
2019 Chronic Pain Patient General Survey – Is Chronic Pain Under Treated

 

CERGM wants to thank Claudia Merandi of Don’t Punish Pain Rally for her input and support on this survey. With the feedback and responses from patrons, CERGM is planning six more surveys which will delve deeper into the impact of government policy on chronic pain patients. Please look for posts on this site, Doctors of Courage and DPPR’s Facebook page for when the surveys are available.

 

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