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Post-Polio Health (ISSN 1066-5331)

Vol. 16, No. 3, Summer 2000

May Meeting in Warm Springs

Joan L. Headley, Saint Louis, Missouri

"International Conference on Post-Polio Syndrome: Identifying Best Practices in Diagnosis and Care" was the name of the conference in Warm Springs, Georgia, May 19-20, 2000. "Best practices" is a term used to describe the documented information that is available to guide treatment of a particular disorder. Another term used is "clinical practice guidelines" and is defined by the Institute of Medicine as ".systematically developed statements to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances."

Each invited health professional (listed below) was assigned a topic and was asked to review the medical literature and present a summary of the information. The biologic plausibility for each topic, or sub-topic, was judged as theoretical or demonstrated. Case reports, case series, uncontrolled observational studies, controlled observational studies, and controlled clinical trials were reviewed to determine evidence (for, against, indeterminate, or no data) for a causal relationship. The participants also provided a summary of the evidence for the effectiveness of interventions/treatments, when feasible.

Following the formal presentations, the attendees discussed how to proceed to reach consensus on the varied and sometimes inconsistent information. One of the points of discussion was the definition of "post-polio syndrome," and it is apparent that there is not an accepted universal definition. (Another recurring theme was the need for more dollars for research, with a limited discussion of possible strategies to increase the amount of funds.)

To fulfill the stated goal of the meeting, the evidenced-based recommendations will be incorporated in the final conference report - "Practice Guidelines for the Management of Post-Polio Syndrome." The March of Dimes will facilitate the preparation of this document and will utilize the abilities of the steering committee, the content of the presentations, and the cooperation of the American Academy of Neurology, the American Academy of Physical Medicine and Rehabilitation, as well as several other allied health care professional organizations. The report and other related educational materials will be completed in the fall.

The following panel presented ideas for the dissemination of the committee's findings:

Christopher P. Howson, PhD, Moderator, March of Dimes, White Plains, New York; Anne Gawne, MD, Roosevelt Institute for Rehabilitation, Warm Springs, Georgia; Joan Headley,* Gazette International Networking Institute, Saint Louis, Missouri; T. Jacob John, MD,* Christian Medical College, Vellore, India; Pesi Katrak, MD, Prince Henry Hospital, Little Bay, Australia; Andria Spindel, Ontario March of Dimes, Toronto Ontario, Canada.

Leland P. Rowland, MD,* National Institute of Neurological Disorders and Stroke, Bethesda, Maryland, chaired the two-day meeting. Jennifer L. Howse, PhD, President and Chief Executive Officer, March of Dimes, White Plains, New York, welcomed the participants, and Anna Eleanor Roosevelt, Vice Chair of the March of Dimes National Board of Trustees, opened the meeting by presenting the "Historical Perspective: Role of the March of Dimes and Warm Springs."

Frank Ruzycki, Executive Director, Warms Springs Roosevelt Institute for Rehabilitation, and his staff provided southern hospitality and tours of the historied facility.

Presenters and Their Topics

Health Impact of Polio – Barbara Vickrey, MD, MPH,* University of California, Los Angeles, California

Pathology – Marinos Dalakas, MD,* National Institute of Neurological Disorders and Stroke, Bethesda, Maryland

Electrophysiology – Neil Cashman, MD,* University of Toronto, Ontario, Canada

Diagnosis: Inclusion and Exclusion Criteria – Lauro Halstead, MD,* National Rehabilitation Hospital, Washington, DC

Evaluation and Treatment – Daria Trojan, MD,* Montreal Neurological Hospital, Quebec, Canada

Exercise – James Agre, MD, Howard Young Medical Center, Woodruff, Wisconsin

Musculo-Skeletal Sequelae: Muscle and Joint Pain – Frederick Maynard, MD, Upper Peninsula Rehabilitation Medical Associates, Marquette, Michigan

Drug Treatment – Susan Perlman, MD,* University of California, Los Angeles, California

Pulmonary Dysfunction – John Bach, MD,* University of Medicine and Dentistry of New Jersey, New Jersey Medical School, Newark, New Jersey

Speech and Swallowing – Barbara Sonies, PhD, National Institutes of Health, Bethesda, Maryland

Sleep Disturbances – Susumo Sato, MD, National Institute of Neurological Disorders and Stroke, Bethesda, Maryland (unable to attend due to emergency)

Psycho-Social Issues: Including Depression – Rhoda Olkin, PhD,* California School of Professional Psychology, Alameda, California

Post-Polio Fatigue – Kristian Borg, PhD,* Karolinska Hospital, Stockholm, Sweden

Effectiveness of Physical Therapy – Elizabeth Dean, PhD, PT,* University of British Columbia, Vancouver, British Columbia, Canada

Occupational Therapy in Management – Beth Kowall, MS, OTR, Greenfield, Wisconsin

Nursing Interventions – Alexa Stuifbergen, PhD, RN, University of Texas at Austin, Austin, Texas
Nutrition - Charlotte Gollobin, MS, Bethesda, Maryland

Post-Polio Problems of the Developing Countries – T. Jacob John, MD, Christian Medical College, Vellore, Tamil Nadu, India

*Members of the Executive Steering Committee
Richard B. Johnston, Jr., MD, National Jewish Medical and Research Center, Denver, Colorado, and William Wendling, Chief Communications Officer of Cleveland Municipal School District, Cleveland, Ohio, are also members of the Executive Steering Committee.