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

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

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

Online Forum for Pain Researchers

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

Social media forums and online communities surrounding health topics are prevalent on the Internet.  The most frequent reason individuals seek medical care is pain; so it is not surprising that there are numerous of active pain-related  online communities.  Most of these communities are focused on pain conditions, treatment, advocacy and support of the individual living with chronic, persistent pain. In contrast to the robust nature of these pain-related online communities for patients and advocates, there has been a paucity of similar online communities for pain researchers and investigators.  The sharing of information and relevant research surrounding the complex nature of persistent pain has historically been relegated to periodic academic conferences and print publications researchers.  However, that may now be changing with the development of the Pain Research Forum.  Launched in June 2011 by  the Harvard NeuroDiscovery Center and Massachusetts General Hospital’s Science Collaboration Foundation,  the Pain Research Forum seeks to speed the translation of scientific knowledge into novel pain therapies by fostering the collaborative nature of an online community and by raising interest in pain research to a wider audience.

We in the Pain Research, Education, and Policy Program (PREP) at Tufts University School of Medicine applaud the collaborative nature of the Pain Research Forum and look forward to participating in this important pain research-based online community.

3 comments November 9th, 2011

Dr. Harris Berman Named Dean of Tufts University School of Medicine

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

The Tufts Pain Research, Education and Policy Program congratulates Dr. Harris Berman on his recent appointment to the position of Dean of the Tufts University School of Medicine. Dr. Berman, a visionary leader in providing healthcare to populations, has a keen interest in the intersection of public health and medicine. In a recent interview in Tufts Now, Dr. Berman discussed his belief that public health should be a part of medicine, an integral part of how we care for the health of our population. Dr. Berman’s interest in population health and prevention began as a Peace Corps physician in India and continued into his leadership roles of healthcare organizations and academia.

The Tufts Pain Research Education and Policy Program began in 1999 when Dr. Berman held the position of Chair of Tufts’ Department of Public Health and Family Practice (as it was then known). A fellow visionary regarding pain as a public health concern, he welcomed PREP into that department where it has been happily housed ever since, now under the Dean of Public Health and Professional Degree Programs, Dr. Aviva Must.

As we, in the Pain Research, Education and Policy Program move forward in our efforts to address the immense burden of pain globally, we are pleased to have Dr. Harris Berman at the helm of the Tufts University School of Medicine.

Add comment October 13th, 2011

PREP Graduates’ Research Collaboration Published in Cochrane Library

by Pamela Katz Ressler, MS-PREP, RN, HN-BC, Adjunct Faculty, PREP Program, Tufts University School of Medicine, PREP-Aired blog administrator and moderator

The Pain Research Education and Policy Program at Tufts University School of Medicine educates thought leaders in the multidisciplinary area of pain.  This is evident by the efforts of two PREP program graduates, one a current Tufts PREP program faculty member and the other a practicing acupuncturist, through their collaborative research concerning endometrial pain and acupuncture.  PREP graduates, Ewan McNichol and Kindreth Hamilton, along with co-author Xiaoshu Zhu, recently published a systematic intervention review; Acupuncture for Pain in Endometriosis in the Cochrane Library.   In this systematic review,  twenty-four studies were identified that involved acupuncture for endometriosis.  One trial, enrolling 67 participants, met all the inclusion criteria.  The authors concluded: “The evidence to support the effectiveness of acupuncture for pain in endometriosis is limited, based on the results of only a single study that was included in this review. This review highlights the necessity for developing future studies that are well-designed, double-blinded, randomized controlled trials that assess various types of acupuncture in comparison to conventional therapies.”

The PREP program applauds our graduates for their continued thought leadership surrounding the global issues of pain research, education and policy.

Add comment September 21st, 2011

Pain Education is a Public Health Imperative: Reflections on Pain Awareness Month and the Institute of Medicine Pain Report

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

Each year, September is “Pain Awareness Month” – a time of intense activity for PREP faculty and the entire pain community  It is also when PREP’s academic year begins.  One key insight connects diverse Pain Awareness activities and PREP’s own vision and mission: PAIN IS A PUBLIC HEALTH ISSUE, AND PAIN EDUCATION IS A PUBLIC HEALTH IMPERATIVE.  Now is a perfect time to step back and place some context around this idea at the heart of not only PREP’s curriculum, but also our entire approach to interprofessional education.

The report issued by the Institute of Medicine earlier this summer – “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research” (ref 1) — is the latest in a series of white papers on pain by governmental and professional groups dating back well over two decades.  These include the first US federal clinical practice guideline (ref 2) on any topic,  numerous international guidelines (ref 3), and white papers from authoritative sources such as the Mayday Fund (ref 4), the American Academy of Pain Medicine (ref 5), and even the World Health Organization (ref 6). Together, they present steadily accumulating evidence that acute, chronic and cancer-related pain are widely prevalent and exact a major economic and human burden in developed nations and even more so in resource-poor countries. Other common themes include lost opportunities for early intervention to control or prevent the transition from acute to chronic pain, the negative outcomes of undertreated pain, the importance of optimal pain control for patient-centered care, disparities in pain assessment and treatment experienced by minorities and other under-represented groups such as women or those at the extremes of age, and the need “to adopt a population-level prevention and management strategy” (ref 1) for pain.  Related to all these is the growing perspective that pain control is a fundamental human right (ref 7) as articulated by Human Rights Watch (ref 8  ) and recently affirmed in the 2010 Declaration of Montreal by delegates to the International Pain Summit (ref 9).

Since its inception in 1999, the Tufts program on pain research, education and policy has been housed in its Department of Public Health and Community Medicine. Although the pain community has long held a consensus that pain is a biopsychosocial phenomenon, most prestigious journal articles and a majority of research funding have emphasized the “bio” end of that word. Thus, the classical Loeser model of pain originates in subcellular nociceptive machinery, then broadens to encompass the experiences of pain and suffering, followed by pain behavior.  The Loeser model is an intrinsically individual one.

(Fig 1. Loeser Model used with permission of Professor John Loeser)

Our program’s framing of pain employs a sociobiological perspective, in keeping with our having been co-founded by a PhD sociologist, Kathy Lasch. Those individuals better able to detect and remember threats to their survival have better odds of propagating their DNA within the collective gene pool. Indeed, within Darwin’s (and more recently, Dawkins’s) “selfish gene” framework, individuals are mere vessels through which genes propagate themselves (ref 10). Whether or not we agree with this view, it sets the stage for interesting discussion by shifting our reference frame to a distinctly supraindividual model of pain. According to PREP’s social model, the experience of pain is still at the core, but to understand it requires research that goes beyond the individual. In human society, research is lost if not translated into education – particularly one that embraces the intersubjective, social and emotional nature of the pain experience. We at PREP are committed to interprofessional education of pain leaders as the most effective way to effect social change – a commitment that led to our program’s specific acknowledgment in the IOM report in its chapter 4, on education.  Among recent PREP graduates and applicants we are beginning to see a few exceptional persons who have chosen to spend their careers as policymakers in the important field of pain. I am delighted to see this, because the continuous translation of the benefits of research and education requires ongoing support through enlightened, population-based health policies.

Fig 2.  PREP model

References

1: Institute of Medicine Report (2011)  http://books.nap.edu/openbook.php?record_id=13172

2: AHCPR clinical practice guideline: acute pain (1992) http://www.ncbi.nlm.nih.gov/books/NBK16501/

3: Carr, DB .”The Development of National Guidelines for Pain Control: Synopsis and Commentary”, European Journal of Pain (2001), 5 (Suppl. A) p. 91-98.

4: “A Call to Revolutionize Chronic Pain Care in America: An Opportunity in Health Care Reform”, Mayday Fund (2009)  http://www.maydaypainreport.org/docs/A%20Call%20to%20Revolutionize%20Chronic%20Pain%20Care%20in%20America%2003.04.10.pdf

5: Dubois, MY, Gallagher, RM, Lippe, PM. “Pain Medicine Position Paper”, Pain Medicine, vol. 10, issue 6, p. 972-1000, Sept 2009. http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4637.2009.00696.x/full

6: World Health Organization press release (Oct 11, 2004)  http://www.who.int/mediacentre/news/releases/2004/pr70/en/index.html

7: Brennan, F, Carr, DB, Cousins, M. “Pain Management: A Fundamental Human Right”, Anesthesia & Analgesia, vol. 105, no. 1, p. 205-221, July 2007.    http://www.anesthesia-analgesia.org/content/105/1/205.full.pdf+html

8: Human Rights Watch 2009 report   http://www.hrw.org/reports/2009/03/02/please-do-not-make-us-suffer-any-more-0

9: Declaration of Montreal 2010 from International Pain Summit http://www.iasp-pain.org/Content/NavigationMenu/Advocacy/DeclarationofMontr233al/default.htm

10: Carr, DB; “What Does Pain Hurt?”, IASP — Pain Clinical Updates, vol. XVIII, issue 3, p. 1-6, July 2009  http://www.iasp-pain.org/AM/AMTemplate.cfm?Section=HOME&TEMPLATE=/CM/ContentDisplay.cfm&SECTION=HOME&CONTENTID=9599

Add comment September 1st, 2011

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