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Post-Polio Health (ISSN 1066-5331)

Vol. 11, No. 1, Winter 1995

Post-Polio Research

The Latest from the Later Life Effects (LLE) Study

Joan L. Headley

In 1990, I read about a five-year study funded by the National Institute on Disability and Rehabilitation Research (NIDRR), Later Life Effects of Early Life Disability: Comparison of Age-Matched Controls on Indicators of Physical, Psychological and Social Status (LLE Study), and was intrigued.

Many studies and surveys of post-polio sequelae are criti­cized because the sample is not selected randomly; there is no comparison to non-polio individuals; and data are not collected over time in a longitudinal design. Because the Later Life Effects (LLE) study included a control group, I called co-investigator Margaret L. Campbell, PhD, and offered our network to her, immediately catching some of her enthusiasm.

Five years have lapsed and the final 168-page report of hypotheses, procedures, comparisons, results, summaries, and conclusions has been released.

Campbell's colleagues, Bryan Kemp, PhD, and Kenneth Brummel-Smith, MD, are now preparing major articles for publication on the "stress-buffering effects of family func­tioning on physical independence and psychological well­being in the later years." Campbell and Victor Ettinger, MD, are also putting final touches on an article comparing the risk of osteoporosis for female polio survivors and sex­and-age-matched controls, ages 50 to 88. Hopefully, the results of this analysis will assist us (women with polio) in making better health care decisions surrounding menopause which, interestingly, lists among its symptoms fatigue, decrease in ability to concentrate, and problems with sleep.

While waiting for these major articles, I decided to high­light some of the conclusions. But first I would like to include Dr. Campbell's description of the "life course per­spective" and share a pertinent quote.

The Life Course Perspective

"Unlike more traditional rehabilitation models, which emphasize physical impairment or functional limitations, the life course perspective enhances our understanding of the meaning and consequences of polio by placing polio-related events, such as acute onset and period of 'physical best,' within the broader context of the individual's whole life and the social and family resources individuals have available to cope with their changing needs and circumstances."

Why Study Polio?

"The importance of studying chronic polio, however, is due as much for its precedence as it is to its prevalence. Developing a better understanding of the later life effects of polio can serve as an important prototype for studying the secondary complications associated with other long term physical disabilities, such as cerebral palsy, rheumatoid arthritis, and spinal cord injury"

Who Was Studied?

The focus is on aging with a disability, so the minimum age for participation was 50 and the historical period of onset was noted. (21.5% had polio between 1906 and 1929; 24% during the '30s; 35.5% during the '40s; 19% during the '50s.) Sixty-five percent were female, 35% male, reflecting the consistent finding that females are disproportionately represented in survey studies.

The average polio survivor studied was 11.9 years old at time of acute onset, and 50.9 years have lapsed since the original polio. The average year when they had polio was 1939, and they spent 26 weeks in the hospital.

Thirty-eight percent were recruited from the newspaper; 46% support groups; 16% friends/personal contacts. Ninety-eight percent of the polio survivors were Caucasian. In other words, the participants were not selected randomly.

Twenty-two (22.3) percent had no or one limb affected at acute onset; 40.5% two limbs; 37.2% three or four limbs. Fifty-eight (57.8) percent met all five criteria for post-polio syndrome (see Halstead, page 2, shaded box); 25% reported no new physical health problems and no new functional loss in activities of daily living (ADL); while 17.2% acknowledged the onset of new health problems, but no new loss of function. These three groups were categorized as "PPS," "no," and "maybe."

Findings

These findings are important because they provide initial empirical support for the first half of the prediction by Jacquelin Perry MD, as to who is most at risk for developing the later life effects of polio. According to Perry, polio survivors most likely to experience PPS are those who were most impaired at acute onset - which is consistent with our data – and who recovered the most between onset and time of physical best.

Data support the conclusion that both the age of onset and severity of acute onset are significantly related to the functional independence and psychological well being of survivors an average of 51 years later. In general, it is a combination of being both older and more severely impaired at acute onset that increases the chances of depressive symptoms and of being more functionally limited when compared to those who were equally impaired at onset but who contracted polio before the age of nine.

The Next Five Years

The Rehabilitation and Research Training Center (RRTC) on Aging with Disability was funded by NIDRR for another five years to continue their investigation of later life effects and secondary conditions associated with long-term disability. In the second funding cycle, both the sample size and number of disabling conditions have been expanded from the previous polio and stroke survivors to include approximately 1,000 individuals aging with cerebral palsy (N=120), polio (N=400), rheumatoid arthritis (N=250), and stroke (N=225).


Margaret L. Campell, PhD, may be reached at the RRTC on Aging with Disability, Rancho Los Amigos Medical Center, 7600 Consuelo St., Downey, CA 90242.

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