Jonas Bromberg, Psy.D. is the Director of Health Communications and a Senior Research Scientist at Inflexxion, Inc. in Newton, MA. He is a consulting psychologist for the Boston Adult Congenital Heart Service at Children’s Hospital, Boston, and a staff psychologist at Human Relations Service in Wellesley, MA.

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Questions

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Evelyn Corsini, MSW:

At Inflexxion you have helped to develop a variety of programs for people living with chronic illnesses, including chronic pain. What led you to apply to the National Institutes of Health for a grant to explore the feasibility of developing a website to help people living with Parkinson’s disease (PD) who experience chronic pain?

Jonas I. Bromberg, Psy.D.: I became intrigued with the idea of developing this resource when I learned that pain is very prevalent in PD, but is often ignored. In the medical realm there is a disproportionate amount of emphasis placed on dealing with the motor symptoms of PD. In the past, many people with PD were told that they would not have pain; but we know now that pain prevalence ranges from 40% to 83% of PD patients, and for some, pain is more disabling than their motor dysfunction.

Over the past ten years there has been an increase in the understanding of, and emphasis on, the non-motor problems, including the psychological and social disabilities, that occur with PD. Dr. Michael Okun, Medical Director for the National Parkinson’s Foundation, powerfully makes this point by asking, “Why is it that when we ask patients with PD, they frequently report pain, yet most neurologists and practitioners fail to address it, or alternatively sweep it under the carpet.” We hope that this interview, and the work we have done to plan the website, will also help draw the attention of clinicians, patients, family members, and advocates to this problem.

EC: How have you gone about your first phase of research for the grant?

JB: In addition to reviewing the literature and talking with our consulting team, our primary method has been to conduct telephone interviews with people with PD, their care partners, and clinical professionals with expertise about PD. During the interviews we talk about their experience with PD-related pain and elicit suggestions for content to include on the site. We will follow up the interviews by asking interviewees to rank their interest in different topic areas. We are still scheduling interviews. We are especially interested in having representation from non-white groups. We would be happy to hear from PainEDU readers who would like to participate in this part of the project.

EC: What have you learned so far?

JB: A number of common themes have emerged from the interviews. First, patients report that their healthcare providers do not routinely ask them about pain. Secondly, patients are not sure who they should talk to about their pain. They see their PD specialist more than their primary care provider, but perceive the specialist as focused primarily on their movement disorder. They don’t see their primary care provider often, and when they do, if they ask questions, answers are usually deferred to the specialist. Third, healthcare providers told us that typically they do not use a standardized assessment with their patients with PD who have pain, and they tend not to refer their PD patients to pain experts.

Both patients and care partners describe that pain has a major negative impact on their life. Universally, patients expressed that they did not know why they were having pain, what caused the pain, did not track their pain, and did not know what to do to lessen the pain. Patients did not report either taking medication for their pain or having an interest in taking medication for pain.

Healthcare providers described their sense that PD pain was not related to the stage of the disease, and that both younger and older patients have pain. They described that a common source of explainable pain for all PD patients is from injuries from falls, and that older patients likely have age-related osteoarthritis as well. They believe that another major cause of pain is related to the on/off timing of the PD medications.

EC: What other connections between pain and PD did you hear about?

JB: Musculoskeletal pain was the most common type of pain patients described, especially back pain. Healthcare providers thought that involved factors included poor posture and muscle spasms. People living with PD reported a lot of anxiety and depression, factors that are also correlated with chronic pain. People living with PD described a great deal of disability. There is a large burden on both the patient and the care partner, and chronic pain leads to additional suffering. This is captured in what one patient told us: “I need my spouse to lift me on and off the toilet and her arthritis is getting worse; I don’t know how long we can continue doing this.”

EC: Did anyone describe pain treatment that they found helpful?

JB: Several patients described that massage was helpful, and they wished they could afford it more often. Physical therapists stated that staying active is important in coping with pain. One therapist noted that though it may seem counterintuitive to the patient to be told to exercise, it is beneficial if the right kind of exercise is tailored to patient’s specific symptoms. We heard about a couple of multidisciplinary PD programs that offer yoga, tai chi, and dance in the physical activities program, all of which were perceived as very helpful.

EC: What is your next step?

JB: We will finish the work we are currently doing and submit a report to the National Institutes of Health with a proposal for a second grant to develop the site and test its effectiveness. Those of us on the project recognize what a complex disease PD is to treat, and the great burden that is on patients and their care partners. We intend to try to provide a website that will enhance the patient’s sense of self control and self-efficacy to manage PD-related pain, relieve depression and anxiety, and help to improve quality of life.

Note: For information about being interviewed for this Parkinson’s Pain project, contact Dr. Bromberg at jbromberg@inflexxion.com