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Health and Demographic Characteristics of Polio Survivors

Sandra S. French and G. Sam Sloss
Associate Professors of Sociology at Indiana University Southeast

A Lincolnshire Post-Polio Library Publication - April 1999

Since 1985, the Louisville and Ashland, Kentucky chapters of the Polio Survivors Organization have collected questionnaire data from polio survivors. The questionnaires included data on:

Two graduate students¹ keyed approximately half (N=295) of these questionnaires into an SPSS data file. While most respondents are from the Midwest, the sample is national in scope. Respondents include people from the east coast to the west coast and from states bordering both Canada and Mexico. The 295 respondents live in 202 different zip code areas with no more than three people from any one zip code. Below we report on the data from this sample of polio survivors. Due to changes in the questionnaires over time (e.g., marital status is not asked in all versions) and missing data from some questionnaires, the N for most tables is fewer than 295.

Social and Demographic Characteristics of the Sample

Comparing our sample with the 1990 Post-Polio Sample reported on by Bruno and Frick (1991), we find similar demographic profiles (Table 1). Respondents ranged from 29 to 85 years in age, with a mean age of fifty-three (53) and a median age of fifty (50). The female/male ratio was 1.7 with eighty-seven (87) percent of the sample either currently or previously married. While the reported educational attainment of our sample is lower than the 1990 National Post-Polio Survey, it is still higher than both the disabled and non-disabled groups. Over half had some college with one in four reporting a bachelors' degree and another fifteen (15) percent with a graduate degree.

Table 1
Characteristic Current
Survey
1990 National Post-Polio Sample²
Post-polio Disabled Non-disabled
Age (Mean) 53 54 -- 47
Female/male ratio 1.7 1.7 -- 1.5
Marital Status
Single 13% 11% 13% 22%
Married 70% 71% 56% 58%
Other (divorced, widowed, separated) 17% 18% 31% 20%
Education
High School or below 44% 29% 71% 52%
More than High School 56% 71% 29% 48%
² Data reported in Bruno and Frick, 1991.

Most people in our sample participated in the paid labor force (Table 2). As we might expect from a population with above average education and physical handicaps, polio survivors were under represented in blue collar occupations and over represented in professional occupations.

Table 2. Work Experience
Work Experience Percent N
Never 2.7 7
Blue collar 10.8 28
Clerical 25.0 65
Manager 8.5 22
Professional 26.2 68
Other 26.9 70
Total 100.0 260

The Polio Experience

This sample contracted polio between the years of 1903 and 1975. Prior to the one case in 1975, the most recent year was 1963. The most frequent year for contracting polio was 1952 which represented thirteen (13) percent of the sample. Half contacted polio during the nine year period from 1947 to 1955.

The questionnaire asks respondents what "type" of polio they contracted, providing responses of cerebral, bulbar, spinal, respiratory and don't know. While classifications are not based on the type of virus but on the area of the body affected, half reported not knowing where they were affected. Of those who knew, spinal was reported most, striking over a third of the sample.

One year or less was the modal age for contacting polio (14.6%) with the next most frequent ages being two, three and four in that order. Nearly half were five or younger and three of four were fifteen (15) or younger. Less than five (5) percent were over thirty (30). On average, respondents filled out the questionnaire forty-five (45) years after first contracting polio.

Table 3. Type of Polio
Type of Polio Percent* Number
Cerebral 3.1 9
Bulbar 14.9 44
Spinal 36.3 107
Respiratory 9.8 29
Don't know 44.4 131
* Over 100% as several had more than one type.

Polio struck people about equally on the right and left sides of their bodies. Legs were affected more than arms (see Table 4).

Table 4. Body Area Affected by Polio
Area Affected Percent* Number
Left side 81.6 191
Right side 85.7 203
Legs 92.5 222
Arms 48.9 116
* Over 100% as several had more than one type.

Three fourths of the sample was hospitalized. The length of stay in the hospital ranged from one month to 10 years. Nearly a third spent up to six months with one in five spending between one and two years and the final fifth spending more than two years hospitalized. Three people reported being hospitalized for ten years.

Table 5. Hospital Experience
Length of hospitalization Percent
Not hospitalized 26.3
1 to 6 months 31.4
1 year to 2 years 21.2
More than two years 21.2

Most survivors report receiving some form of physical therapy (Table 6). Half report being treated with Kenny Hot Packs. Six percent were in tank respirators with another six percent on another type of respirator. Very few received psychiatric attention. While the questionnaire did not ask if any respondents received the polio vaccine before they contracted polio, more that two thirds (68.8%) report taking the vaccine after having polio.

Table 6. Type of Treatment
Type of Treatment Percent*
Physical therapy 82.2
Kenny hot packs 56.3
Occupational therapy 13.1
Psychiatric help 3.6
Respiratory therapy 7.1
Tank respirator 5.6
Other respirator 9.6
Rocking bed 3.2
* Over 100% as several had more than one type.

Polio survivors were left with varying degrees of physical problems, with weakened muscles the most common (see Table 7). For many the weakened muscles required they use a variety of aids for mobility.

Table 7.
Physical condition Percent* N
Weak muscles 67.2 180
Paraplegic 21.6 59
Quadriplegic 5.5 15
Ambulatory 19.2 52
Wheelchair 17.2 47
Braces 42.5 116
Respiratory Aids 4.4 12
* Over 100% as several had more than one type.

The questionnaires included two symptom checklists. The first list asked respondents "Have there been ANY changes in your physical condition?" They were instructed to "Check any or all that apply." Respondents were then asked to list the problems from the list for which they sought medical advice (Table 8). The instructions for the second symptom checklist read, "In the past few years, have you experienced any of the following?" (Table 9).

Over ninety (90) percent reported at least one recent health problem. Like the 1985 and 1990 National surveys, this sample reported fatigue to be their most common new health problem. On both lists approximately eighty (80) percent report suffering from this ailment. A close second on each list is weak muscles. Items pertaining to sleep, circulatory problems and numbness were checked by nearly half the respondents. Other items reported by significant percentages of the sample include gastrointestinal problems, breathing and respiratory problems, scoliosis, and urinary problems. While most of the problems are physical, significant numbers checked psychological problems of depression, anxiety and personality changes.

Table 8. Checklist 1: Any changes and if medical help was sought for the problem.
Type of change? Percent Med help?
Any changes 91.2 71.3
Shortness of breath 42.8 8.4
Headache 41.1 13.3
Fatigue 78.1 20.0
Dizziness 25.5 7.9
Brittle bones 9.6 4.2
Fractures 10.7 5.8
Anxiety 33.6 7.9
Blacking out 5.2 3.6
Scoliosis 30.4 9.7
Personality change 18.5 4.2
Gastrointestinal 38.0 13.3
Depression 39.1 12.7
Interrupted sleep 47.6 12.7
Need to sleep 41.3 12.1
Numbness 48.0 12.1
Respiratory infection 24.3 7.9
Weak muscles 67.2 32.7
Other 42.9 50.3

 

Table 9. Checklist 2 - Percent experiencing problem in past few years.
Symptom Percent
Increased fatigue 83.9
New muscle weakness 81.1
Muscle/joint pain 78.6
Scoliosis 44.4
Depression 51.0
Numbness 55.3
Gastro-intestinal 51.9
Ambulatory 67.9
Respiratory 36.3
Circulatory problems 50.0
Arthritis 55.3
Insomnia 54.4
Night sweats 36.7
Nightmares 18.0
Night breathing/choking 26.4
Hoarseness 26.5
Increased thirst 32.6
Urinary problems 35.9
Memory problems 33.9

Forty (40%) were currently under treatment for a health problem. Seventy-two (72%) percent suspect their recent problems are polio related. When asked where they had heard about post-polio problems, the most common response was from a newspaper article (see Table 10).

Table 10. Media Source Suggesting Polio
Source of Suspicion Percent N
Television 26.1 41
Radio 5.9 9
Newspaper 60.5 95
Magazine 26.6 41

Nearly three fourths of the polio survivors experiencing a new problem suggested to their physician that the problem might be polio related (Table 11). Respondents report six of ten physicians were receptive to their suggestion. Nearly half report their physicians connected the symptoms with polio. While we can understand why only one in four physicians had previous experience treating polio patients, it was disappointing to find only one in five reported their physicians sought additional information for them. Less than a third of the physicians recommended a rehabilitation evaluation.

Table 11. Interactions with Physicians
Interactions with Physicians Percent
Did you suggest to physician polio was cause of problem? 73.3
Was physician receptive? 61.9
Did physician suggest polio was cause? 47.1
Had physician treated polio in past? 20.9
Did physician seek information for you? 21.8
Did you have a rehabilitation evaluation? 27.7

Sex Differences

There were no sex differences by type of polio, age of contracting polio, or educational attainment. Polio weakened and crippled both males and female at similar rates. Treatments were similar except females were more likely (61% to 46%) to have been treated with Kenny hot packs.

As we might expect, females were more likely to work in clerical positions. Similarly, females report seeking medical advice more often (76% - 63%) than men.

There were few reported sex differences in current health problems. Of the problems listed in tables 8 & 9, females report more fatigue, while males report slightly higher rates of memory problems and personality changes. Weaker muscles in women are found in the general elderly population (Litt, 1998) so this is not likely to reflect a differential impact by polio. The most interesting finding is that there are virtually no differences in health problems by sex.

Age Factors

T-tests between those experiencing and not experiencing specific health problems revealed few differences in the age each group contracted polio. Those experiencing anxiety and scoliosis were slightly younger than those not reporting these problems. On the other hand, those suffering from weak muscles and ambulatory problems were slightly older than those not experiencing these problems. The largest age difference was between those hospitalized for polio (11.7) and those not hospitalized (4.8 yrs.).

As we might expect, those who had polio more recently were more likely to have been hospitalized. Contrary to what we might expect, symptoms did not become greater the longer it had been since one was first infected with polio. Of all the problems listed in tables 8 & 9, only those reporting urinary problems had polio in the more distant past. On the other hand, those reporting problems with headache, fatigue, need to sleep, muscle/joint pain, depression, numbness, and memory problems had polio more recently.

The major issue is which health problems are due to Post Polio Syndrome and which to normal aging. Overall we found few differences in current age between those experiencing symptoms and those not experiencing symptoms. When differences do exist, those reporting the problem are younger than those without the problem. Those reporting problems with headaches, personality change, sleep problems and depression, were slightly younger than those not reporting such problems.

Summary and Conclusions

The survey data collected by the Polio Survivors Organization is consistent with and supports research findings from previous populations of polio survivors. While polio survivors have had to deal with a variety of physical disabilities, they are at least as likely to marry as the general population, have been actively involved in the labor force and have above average educational attainment.

Thirty to forty years after being afflicted with polio, many survivors are experiencing new medical problems that appear to be related to their earlier polio experiences. While many polio survivors have sought medical treatment for some of their problems, many physicians have not had experience treating polio patients.

Acknowledgements

We want to thank the Polio Survivors Organizations of Louisville and Ashland, Kentucky for collecting the data. We would also like to thank Indiana University Southeast for funding our Summer Faculty Fellowships that provided us the time to analyze the data.

¹Special thanks to Lee Bruce and Alice Wilson for work on this project.

For more information please contact Sandra S. French (sfrench@ius.edu) or G. Sam Sloss at (gsloss@ius.edu).

References

Bruno, Richard L. and Nancy M. Frick. "The Psychology of Polio as Prelude to Post-Polio Sequelae: Behavior Modification and Psychotherapy." Orthopedics. V.14:11. November, 1991. 1185-1193. [Lincolnshire Library Full Text]

Litt, Iris F. 1998. "Health Issues for Women in the 1990's." in Dina L. Anselmi and Anne L. Law. Questions of Gender. Boston: McGraw Hill. 690-701.

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© Copyright Sandra S. French and G. Sam Sloss 1999

© Copyright The Lincolnshire Post-Polio Network 1999 - 2010.

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Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.
Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/library/usa/kentuckysurvey.html>
Created: 14th April 1999.
Last modification: 31st January 2010.

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