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Communicating the Experience of Chronic Pain and Illness through Blogging

When one thinks of chronic or persistent pain one often thinks in terms of the biologic pathways of pain perception.  However, an important component of pain involves of the psychosocial aspects of coping with a chronic illness.  Disciplines across the health professions, including medicine, nursing, psychology, social work, and sociology, are actively engaged  in understanding the psychosocial and emotional consequences of chronic pain and illness: Yet few studies have addressed the  use of web-based tools, such as blogs, in the patient experience of living with chronic pain or illness.

Four Tufts University School of Medicine faculty members, Pamela Katz Ressler (Pain Research, Education and Policy Program), Libby Bradshaw (Pain Research, Education and Policy Program), Lisa Gualtieri (Health Communications Program), and Kenneth Chui (Public Health and Community Medicine) from the Tufts University School of Medicine in the Department of Public Health and Community Medicine recently published the results from a  formative research study,  Communicating the Experience of Chronic Pain and Illness through Blogging, in the Journal of Medical Internet Research.

The goal of this research was to explore the use of patient illness blogs as a means of communicating the experience of chronic pain  and illness and to articulate the unique set of benefits and barriers of blogging.  Qualitative data from 230 current illness bloggers were collected and analyzed to better understand the self-perceived psychosocial and health effects associated with the blogging activity. Results suggest that blogging about chronic pain and illness may decrease a sense of isolation through the establishment of online connections with others and increases a sense of purpose to help others in similar situations. While the authors’ acknowledge the study limitations, they are hopeful that further research will be conducted to explore the observed associations between communicating the experience of chronic pain through blogging and patients’ coping and self-efficacy when living with chronic pain or illness.

To read the full paper, Ressler, PK; Bradshaw, YS; Gualtieri, L ; Chui, KKH: Communicating the Experience of Chronic Pain and Illness through Blogging,  in the Journal of Medical Internet Research, please click here.

 

1 comment December 11th, 2012

Pain as a Top-Down Phenomenon: a Bibliography

by Daniel B. Carr, MD, FABPM, FFPMANZCA (Hon.), Director, Pain Research, Education and Policy (PREP) Program, Tufts University School of Medicine

Since its inception in 1999, a single concept has unified PREP’s curriculum and connected its community. This theme is that the study of pain is best accomplished if it is seen as a top-down (i.e., population-based) public health phenomenon as noted in the 2011 IOM Report on Pain.  We are fortunate that PREP has always been situated within the Department of Public Health and Community Medicine and grateful that its Chairs and Deans — Harris Berman and Aviva Must — have shared this view and continually encouraged PREP’s growth.

Advances in pain research and education, particularly as informed by the emerging field of social neuroscience, have made PREP’s vision more and more timely.  Reflecting the broader pain community’s growing awareness of PREP’s distinctive voice, this year I’ve had the privilege of delivering keynote addresses at congresses of the American Pain Society, the Special Interest Group on Pain Education of the International Association for the Study of Pain, and the American Society of Pain Educators’ PAINWeek. The specifics of each talk differed somewhat but all conveyed PREP’s underlying theme.

In response to requests from attendees at these lectures, I have assembled an interim bibliography to allow anyone interested to become better informed about some of the sources that the PREP program draws upon. Reflecting PREP’s interprofessional, eclectic outlook, many are from the humanities and social sciences, complemented by the biomedical literature.  For example, according to the narrator in the novel by Greer, “I do not know what joins the parts of an atom, but it seems what binds one human to another is pain”.

Those who wish to immerse themselves in our curriculum will enroll in a course or one of our certificate or degree programs. Click here to find out more about taking a course.  Following the great success this summer of PREP 233 (End of Life and Palliative Care, directed by Pam Ressler) in a blended onsite-online format, our foundational course PREP 230 is the next of our courses to be offered in this format.  This fall, PREP 230 will begin on September 28.  To reflect exciting advances in the field of pain, we have changed this course’s title from “Neuroanatomy, Neurophysiology and Neuropharmacology of Pain” to “Neuroscience of Pain: from Society to Synapse”.  Click here to learn more about this course.  As in earlier years it will be directed by Steve Scrivani, who has consistently earned high praise for his meticulous running of this course. Besides his own lectures, over the years Steve has assembled a core group of dedicated, expert faculty to provide students with an unparalleled learning experience.

Click here to access bibliography.

Add comment September 5th, 2012

New Multidisciplinary Pain Program Announced at NIH

By Pamela Katz Ressler, MS, RN, HN-BC, adjunct faculty, Pain Research, Educationand Policy Program, Tufts University School of Medicine

The National Institutes of Health (NIH) recently announced a new multidisciplinary pain program that will be focused on the role of the brain in perceiving, modifying, and managing pain.  The program, lead by internationally recognized pain researcher and neuroscientist, Catherine Bushnell, PhD,  will be based in the National Center for Complementary and Alternative Medicine (NCCAM), a part of the National Institutes of Health.

“Dr. Bushnell’s work has profoundly changed the ways in which we understand and study this very important problem,” said NCCAM Director Josephine P. Briggs, M.D. “Under her leadership, this program will continue to work toward the development of better ways to safely and more effectively treat chronic pain, and advance research on the intersection and integration of pharmacological and non-pharmacological approaches.”

The NIH announcement of the pain program comes at a critical time in the growing burden of chronic pain in our society.  The Institute of Medicine reports that more than 100 million people suffer from chronic pain conditions and nearly $635 billion is spent annually for treatment and lost productivity.

Research projects for the new program will include investigating  how chronic pain produces changes in the brain that may modify how the brain reacts to pain medications, such as opioids; as well as exploring factors such as emotion, environment and genetics in pain perception.

The Tufts Pain Research, Education and Policy program faculty and students will look forward to future collaboration with this innovative new program.

Read the July NCCAM Clinical Digest on Chronic Pain and Complementary Health Practices

Add comment July 17th, 2012

Are Pain Medication Prescriptions Delaying Workers Return to Work?

by Pamela Katz Ressler, MS, RN, HN-BC, adjunct faculty, Pain Research, Education and Policy Program (PREP), Tufts University School of Medicine, moderator PREP-Aired blog

Workplace insurers spend an estimated $1.4 billion annually on opioid pain medication for injured workers, and this number has continued to rise over the past decade.  A recent article in the New York Times, Painkillers Add Costs and Delays to Workplace Injuries highlights a 2008 study by the California Workers Compensation Institute that found that workers who received high doses of opioids stayed out of work three times longer compared with workers with similar injuries who received lower doses of opioids.  However, one must not look at these data in isolation and out of context of current health care reimbursement practices — is it the dose of opioids or other factors that contributed to their inability to return to work?  A trend over the past decade has been for insurers to reimburse for prescription medication but  to reduce or eliminate reimbursement for other pain therapies such as physical therapy, behavioral therapy and intergrative models of pain management.  Perhaps examining current best practices for pain management, which include pharmaceutical as well as other non-pharmaceutical therapies will result in more positive outcomes for injured workers and cost savings for workplace insurers.

What are your thoughts?

Add comment June 7th, 2012

The PREP Program at Tufts University School of Medicine is GOING THE DISTANCE

The Pain Research, Education & Policy (PREP) program at Tufts University School of Medicine is GOING THE DISTANCE! 

Since 1999 Tufts has had a unique program that trains leaders in pain research, education and policy. Our graduates have included nurses, physicians, dentists, physical therapists, nurse practitioners, physician’s assistants, pharmacists, researchers, holistic health practitioners, occupational therapists, massage therapists, social workers, hospice workers, health policy advocates, and other health care professionals.

Your input is valuable to us as we plan our move from Boston only-based classroom learning to distance/online  learning — please take this brief, 21 item educational needs  survey. It should take 10 minutes or less to complete.

 TAKE SURVEY NOW

SURVEY EXTENDED TO APRIL 30th TO ALLOW A BROADER RANGE OF OPINIONS TO BE ADDED.  COMPLETE THE SURVEY BY APRIL 30, 2012 TO BE ELIGIBLE FOR THE PRIZES BELOW! 

If you wish to be eligible to win

  • The new (March 2012) iPad (1st prize)
  • 1 OF 2 iPOD SHUFFLES (2nd Prize)
  • 1 OF 25 iTUNEs $10 GIFT CARDS (3rd Prize)

Just leave your name and email address as directed at the end of the survey.

1 comment April 19th, 2012

Tufts PREP Hosts WEGO Health Twitter Chat (#HAchat) on March 13

by Pamela Katz Ressler, MS, RN, HN-BC, adjunct faculty Pain Research, Education and Policy Program (PREP) Tufts University School of Medicine, PREP-Aired blog moderator and administrator

The Pain Research, Education and Policy Program (PREP) will be hosting the WEGO Health health activists Twitter Chat on March 13, 3 PM EDT (#HAchat). We are thrilled to be sitting around the virtual table with health professionals, caregivers, health activists and advocates to discuss the important issue of chronic pain. To participate in the chat you will need a Twitter account, then join us at this link: tweetchat.com/room/HAchat#

Here are some interesting (and alarming) statistics about chronic pain (note that these statistics do not include pediatric pain).

From MA Pain Initiative survey (2010)

  • 1 out of 4 adults in Massachusetts suffers from persistent pain, interfering with daily life/work for at least some of the time.
  • Among minorities, 42% reported persistent pain

From Institute of Medicine Report on Chronic Pain (2011)

  • Chronic pain (pain lasting more than 3 months) affects an estimated 116 million American adults—more than the total affected by heart disease, cancer, and diabetes combined.
  • Pain also costs the U.S. up to $635 billion each year in medical treatment and lost productivity.

Pain was previously described as a symptom of another disease and was treated as such.  However this definition has been proven to be very narrow.  The Institute of Medicine now describes pain as a public health issue, affecting the health of the society as well as the individual.  This is a call to action for health activists and advocates to educate themselves to work toward better and more comprehensive pain management.

Here are some helpful websites to learn more about the multiple dimensions of pain:

Resources

Want to learn more about the Pain Research, Education and Policy Program at Tufts University Medical School? Did you know that we are the first and only multidisciplinary pain program in the country? Did you know that we welcome both clinicians and health advocates and activists to our program? Did you know that you can take a course without being a matriculated student?  Contact Wendy Williams (Wendy.Williams@tufts.edu), Associate Director of the Tufts Pain Research, Education and Policy Program to discuss how you can make a difference in the treatment of pain.

2 comments March 13th, 2012

Can Diet Play a Role in Pain Management?

by Pamela Katz Ressler, RN, MS-PREP, HN-BC, adjunct faculty Pain Research, Education and Policy (PREP) program at the Tufts University School of Medicine, and moderator of the PREP-Aired Blog

Can diet be a tool in our pain management arsenal?  According to McGill professor and researcher, Dr. Yoram Shir the answer is yes.  The Pain Research, Education and Policy Program (PREP) was honored to host Dr. Shir on  February 9, 2012 and hear about his fascinating research on the association of pain and diet.  Dr. Shir, director of the Alan Edwards Pain Management Unit at McGill University Health Centre, related that moving his lab from Israel to the United States created an unexpected opportunity to study the effect of different standard diets on pain in animal models (lab rats).  The combination of type of protein as well as type of fat suggested an influence on pain in the animals studied.

Exploring the observation of a correlation between diet and pain, Dr. Shir began testing various combinations of protein and fat.  Interestingly, a diet high in soy protein and omega-3 fatty acids appeared to inhibit pain, while a diet rich in canola oil appeared to increase the pain response.  Small pilot studies with human subjects, those suffering from neuropathic pain, have been promising, but larger studies will be needed to further generalize the findings.

The Pain Research, Education and Policy program thanks Dr. Shir for sharing with us his exciting research in diet and pain.

4 comments February 27th, 2012

LIFE Before Death Documentary Screening

by Pamela Katz Ressler, RN, MS-PREP, HN-BC, adjunct faculty Pain Research, Education and Policy Program, Tufts University School of Medicine, PREP-Aired blog moderator

On February 2, 2012, at sites around the world, a remarkable documentary will be premiered.  LIFE Before Death seeks to raise awareness of the global issue of untreated and under-treated pain and the lack of adequate access to palliative care.

Dr. Dan Carr, director and founder of the Pain Research, Education and Policy Program (PREP) within Tufts Public Health recently commented on the selection of the Tufts’ PREP program as one of the U.S. movie screening locations, and global issue of pain relief as a human right.  “PREP is honored to be one of the sites at which this remarkable film will be premiered worldwide. Sponsored by international pain relief and anti-cancer organizations, LIFE Before Death presents a moving, sobering and ultimately inspiring picture of courage amidst suffering. Tragically, much of the suffering at the end of life documented in this film in emerging economies is the unnecessary consequence of the unavailability of morphine and other inexpensive, effective medications. In first-world countries, patients are caught within health systems whose major goal is curbing prescription drug abuse. At a time when access to pain control is seen as a human right, this film appropriately pushes us out of our comfort zone”, stated Dr. Carr.

As emphasized by Dr. Carr, the issue of pain control in emerging global economies is immense.  Global health organizations have estimated that more than 3.3 million individuals die with untreated moderate or severe pain form cancer and HIV each year (2009 WHO and UN Narcotics Control Board).  Advocacy for adequate pain and palliative care is essential, concurred Carol Curtiss, MSN, RN-BC, a palliative care expert and adjunct faculty member of the PREP program.  Ms. Curtiss stated, “Unrelieved pain and other distressing symptoms are challenges to quality of life, yet millions of people worldwide do not have access to  expert care, basic pain medications and the other essential resources. Through viewing this film, LIFE Before Death,  I hope participants will acquire or renew their passion to advocate for changes in policy, education and research that will make access to pain and palliative care a reality for people who experience  life-threatening illnesses. For me, this film reaffirms what I’ve learned over the years by working with colleagues in developing countries and in clinical practice here – we have much more work to do to assure that individuals everywhere have the right to effective  pain management and palliative care throughout their lives. In the U.S., we are facing difficult times dealing with misuse and diversion of medications. We MUST be sure that people with pain have access to evidence-based pain management and palliative care in the U.S. and around the world.”

Join together with clinicians, educators, policy makers, advocates and activists who believe that pain relief is a human right for the Tufts’ PREP screening of LIFE Before Death on Thursday, February 2 from 3:00-5:15 PM at the Wolff Auditorium at Tufts Medical Center.  The Tufts’ screening will be introduced by nationally syndicated health columnist, Judy Foreman and followed by a panel discussion with pain and palliative care experts.

Click here for more information

LIFE Before Death Movie Trailer

Add comment January 30th, 2012

Acupunture and Palliative Care Research Study

by Pamela Katz Ressler, MS-PREP, RN, HN-BC, adjunct faculty Pain Research, Education and Policy Program, Tufts University School of Medicine, PREP-Aired Blog moderator

Jessica Peck, MAc, LAc, MS-PREP candidate presented her capstone research project on December 9, 2011 to a group of students, faculty members and invited guests at the Tufts University School of Medicine. Jessica initiated an ambitious, ongoing study for her capstone project which is being conducted at the Maine Medical Center’s Palliative and Supportive Care Clinic. The focus of her pilot research study is the implementation and evaluation of the feasibility of using acupuncture plus standard care to treat pain and associated symptoms in cancer patients. Jessica will continue to work with her capstone preceptor, Dr. Lauren Michalakes, Director of Palliative Care at Maine Medical Center as her study progresses.

Congratulations, Jessica, for embracing the collaborative nature of the Pain Research, Education and Policy Program by creating a working partnership between eastern and western models of health care.

Jessica Peck and NESA's Amy Hull

1 comment January 6th, 2012

Patients are Dissatisfied with Chronic Pain Management

by Pamela Katz Ressler, MS-PREP, RN, HN-BC, adjunct faculty Pain Research, Education and Policy Program, Tufts University School of Medicine and PREP-Aired blog moderator

As has been discussed previously in this blog, the under-treatment of chronic or persistent pain places an enormous burden on individuals, the health care system, the economy and our society.  In June 2011, the Institute of Medicine reported that there are an estimated 116 million individuals in the United states who report chronic pain, at an economic cost of $635 billion per year.   According to a recent article by Matthew Brady in the magazine of the site, Angie’s List, (which reviews numerous categories of service and health care providers;) “health care providers in the pain management category garner negative reviews at twice the average of other Angie’s List categories” Additionally, Angie’s List members reported that their “health care provider didn’t take their problem with pain seriously”.

While reports of patient dissatisfaction with chronic pain management are disturbing, they are understandable when one recognizes the paucity of training most clinicians receive in chronic pain management.  According to the Association of American Medical Colleges less than 1 in 4 of the 133 accredited medical schools in the country teach students about chronic pain management and most students receive less than 11 hours of pain management training in their entire 4 years of medical school.

Addressing the systemic lack of comprehensive pain education is a key mission of the Tufts University School of Medicine’s Pain Research, Education and Policy Program (PREP).  The founding director of the PREP program, Dr. Dan Carr, states that the high level of dissatisfaction and complaints among patients seeking effective chronic pain management may reflect the traditional training of clinicians to focus only on objective measures and procedures to alleviate pain, without regard to the social and psychological aspects of persistent pain. “There is an enormous social component to pain,” states Dr. Carr. “Patients will be more satisfied if they feel they have been cared for. That has more to do with their satisfaction with pain control than the actual intensity of their pain.”

While there are no easy answers to chronic pain management; patients, clinicians, educators and health care stakeholders all agree that our current approach to pain management is inadequate and needs to be addressed as we prepare to meet the increasing health needs of an aging baby-boomer population.

What are your thoughts on how we can create a more comprehensive model of chronic pain management?

Add comment December 8th, 2011

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