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Post-Polio Health (ISSN 1066-5331)

Vol. 18, No. 1, Winter 2002

Maximizing Health for Survivors of Polio - Early Findings

Alexa Stuifbergen, PhD, RN, FAAN, The University of Texas at Austin School of Nursing, Austin, Texas

Dr. Stuifbergen, Professor at The University of Texas at Austin School of Nursing and Associate Dean for Research and Director of the Center for Health Promotion Research in Underserved Populations, has conducted research for about 15 years with persons who have multiple sclerosis. When her new study, funded by the National Institutes of Health, included a study of polio survivors, she contacted International Polio Network (IPN) in 1999 for assistance with locating polio survivors. Stuifbergen mailed questionnaire packets to 2,302 subscribers of Polio Network News and received 2,153 completed questionnaires – a remarkable 93.5% response rate.

The participants in our study, Maximizing Health for Survivors of Polio, were primarily recruited through IPN, so the findings represent this group of respondents and not a random sample of polio survivors. It is also important to remember that your individual experience can be very different.

The average age was 62 years, approximately half were age 41-60, and half were over age 60. The majority (69%) were female and married (67%). Almost all of the participants had completed high school and 49% had completed at least four years of college. Only 20% of the respondents were still employed full time. Most participants (65%) reported that they had originally had spinal polio involving weakness in the arms, legs and back; 23% reported both spinal and bulbar polio. Twenty percent of those responding to the questionnaire were under age two when they had polio; 64% were age 10 or younger.

Compared to their own physical best, many reported that during the last five years they had experienced either quite a bit (29%) or a great deal (29%) of a decrease in their ability to carry on their normal activities of daily living. Of those responding, 76% said they had been diagnosed as experiencing post-polio syndrome and 69% had been diagnosed as having the late effects of polio. Those who had been diagnosed with post-polio syndrome tended to report more barriers to taking care of their health, more depressive symptoms, greater physical impairment and they perceived their quality of life less positively compared to those who had not been diagnosed with either post-polio syndrome or the late effects of polio. Again, there was a tremendous amount of individual variance.

There were many questions about health practices – nutrition, physical activity, stress management and social support, because the research focuses on how these health behaviors can positively impact a person's quality of life. Overall, the scores on the measures of health promoting behaviors were not very different from the scores of the large samples of persons with MS or other persons residing in the community.

The one major area of difference was in the scores on physical activity. Some individuals wrote on the questionnaire that persons with post-polio syndrome cannot exercise and that these questions should not be asked. I would like to emphasize that while it is important to not "overdo" and engage in overly strenuous exercise, staying physically active is very important to all persons.

Only 40% of the respondents did stretching exercises, only 16% engaged in light to moderate physical activity, and 15% engaged in leisure-time physical activities. These findings are very important - inactivity can lead to many other problems that are related to deconditioning. If you are experiencing pain or fatigue, you may find that engaging in some type of activity – a stretching program, swimming, gentle exercise or some type of adaptive activity – may help. You should consult with your physician or a physical therapist to determine what is right for your individual situation.

One of the findings from this study is that the practice of positive health behaviors (stress management, keeping as physically active as possible, engaging in supportive relationships, maintaining a positive attitude and eating a healthy diet) can mediate the effects of impairment and disability on quality of life. That is, some persons who have more severe impairment and who practice health promoting behaviors more frequently will perceive their overall quality of life more positively and have fewer depressive symptoms than those who do not practice these behaviors.

During the last year, three articles about post-polio problems were published in nursing journals that reach a large percentage of practicing nurses.

References

Chasens, E.R., et al. (2001). Nocturnal problems in post polio syndrome: Sleep apnea symptoms and nocturia. Rehabilitation Nursing 26(2), 66-71.

Chasens, E.R., & Umlauf, M.G. (2000). Post-polio syndrome: Symptoms resurface in polio survivors. American Journal of Nursing 100(12), 60-65.

Harrison, T., & Stuifbergen, A. (2001). Barriers that further disablement: A study of survivors of polio. Journal of Neuroscience Nursing 33(3), 160-166.