This is an interview with Carol Curtiss, RN, MSN, one of the leaders of the Massachusetts Pain Initiative, about the organization’s recent statewide survey of pain. Ms. Curtiss is an experienced advanced practice oncology nurse who consults on pain management and teaches at the Tufts University School of Medicine in Boston.

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Questions

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Evelyn Corsini, MSW:

To give our readers some background, please describe the mission of the Massachusetts Pain Initiative (MassPI) and explain its relationship with the Alliance of State Pain Initiatives.

Carol Curtiss, RN, MSN: The MassPI is a state-wide non-profit volunteer organization dedicated to ending needless suffering from acute and persistent pain, and to improving the quality of life for all people affected by pain. Our members include a variety of health care providers and people with chronic pain. We are affiliated with the American Cancer Society, New England Division. About 2/3 of the states in the US have a pain initiative, and while each is independent, they are loosely linked through a national organization, the Alliance of State Pain Initiatives. Many also affiliate with the American Cancer Society or a Hospice and Palliative Care program.

EC: What led the MassPI to initiate this state-wide survey?

CC: We decided to do the survey because we know that pain has an adverse effect on the quality of life. We wanted to see how many people in Massachusetts would report this experience and if there were programs or projects the Massachusetts Pain Initiative could develop to help. In addition, we know from other studies that minorities are undertreated for chronic pain, so we wanted to look at the impact of pain on a minority population sample in Massachusetts. Finally, since a great deal of our work is devoted to educating health care providers and the public about the problem of pain, we hoped to draw attention to our mission this way.

EC: Did the finding of the high prevalence of chronic pain surprise you?

CC: Yes, it did. It's clear to us that undertreated pain is a serious problem in Massachusetts and people struggle to find relief. Let me explain our methods. This was a telephone interview with 500 Massachusetts adults who represented the general population of the state. In addition, we oversampled minorities in order to gain another 100 interviews with minorities who reported chronic pain.

Our initial screening question was, “Within the last two years, have you or anyone in your immediate family experienced pain on a fairly regular basis for at least three months”. If the answer was “yes”, the interviewer then asked to speak with the person with pain.

We were stunned to learn that of the population we sampled, almost one quarter, 24%, described living with pain. On a 0 - 10 scale, almost half of the respondents (48%) reported that their pain was severe, with a rating of 7 or higher. For the minorities we sampled within the general population, the incidence rate of pain was 42%. Overall, minorities suffer much more from pain and are less able to obtain adequate care.

While nearly nine out of every ten respondents (86%) said that their pain had been diagnosed, 28% of the minorities interviewed reported that they did not have a diagnosis for their pain. Massachusetts has a large number of citizens with health insurance, but whether they had private insurance, MassHealth, (the state’s Medicaid program), or no insurance, did not seem to play a role in whether their pain had been diagnosed. Although most respondents reported that their pain had been diagnosed, their high pain scores demonstrated that this did not result in pain relief.

EC: What did you learn about the impact of pain on the quality of life?

CC: Nearly three quarters of the respondents reported that their pain negatively impacted their quality of life and interfered with their productivity. For example, 78% said that their pain interfered with their sleep, 68% said that their pain interfered with the ability to do everyday things, and 73% said that their pain interfered with their ability to work productively.

EC: Since most of the respondents reported having a pain diagnosis, where were they receiving their medical care, and what treatments were they using?

CC: Respondents relied predominantly on their primary care providers for pain care, although a substantial number also used other medical specialists, including pain specialists. Only 40% found their primary care provider to be very helpful. Within the last two years, 31% reported going to the emergency room, the most expensive place to get medical care, for pain treatment.

Respondents over age 70 were less likely to use the emergency room (24%), than those under age 55 (39%). Respondents over age 70 were also less likely to have a diminished quality of life, and more likely to have a diagnosis.

Respondents reported using different types of pain therapies including exercise, OTC medications, prescription medications, physical therapy, prayer, and several types of complementary therapies. Respondents found OTC pain medications the least effective pain therapy, and prescription pain medications the most effective pain therapy.

EC: Survey results were reported in the Boston Globe newspaper and its website, and the resulting emails to the paper covered a wide range of opinions, from “these are drug seeking addicts” to “the overwhelming majority of patients who suffer from chronic pain are not drug addicts.” Do you have thoughts about this?

CC: The comments are difficult to interpret, but they reflect a common misconception of assuming strategies for effective pain management and the problem of substance use disorder are one and the same - they are NOT. They are two entirely different issues. Undertreatment of pain is a serious problem affecting every aspect of a person's life. Opioid medications can be highly effective and are a legitimate part of a comprehensive pain management plan. Addiction is a chronic brain disorder characterized by compulsive use, use that is out of control, and the continued use of a substance despite harm. This does not describe the majority of people with pain.

As noted in some of the comments, many people with pain are often reluctant to take medications, but do so to manage pain and improve their function, productivity and quality of life. To accuse them of malingering or having a substance use disorder based only on the fact they are taking opioids for pain is incorrect. No one should live or die in pain because of our misunderstandings or misperceptions. The potential for abuse and diversion requires a balance between availability for providers for legitimate use for pain management, and sensible controls to prevent diversion and abuse. It's important not to confuse two very different issues and treat them as if they are one.

For more information about this survey go to the Massachusetts Pain Initiative web site.

Like all Pain Initiatives, MassPI welcomes volunteers from diverse backgrounds. Read the text of a short speech posted on the painACTION website, given by Cindy Steinberg, a person with pain from Massachusetts, when she received a national commendation.