On October 25, 1997, the Rancho Los Amigos Post-Polio Support Group, Downey, California, was privileged to hear Margaret Campbell, Ph.D. report on her research with polio survivors. Since Dr. Campbell is a social scientist, specializing in aging, her approach is very different from that of a medical doctor.

The Changing Disabled Population

Until recently, the public health field wasn't particularly interested in disability. But within the last 10 to 15 years the number of people living with long term disabilities has been increasing dramatically. So disability has become a "growth industry" in terms of health care and in terms of policy. What has caused this change?

• Longevity:
  People are living longer and thus are more apt to develop age related disabling conditions.
• Survivorship:
  People who had onset of disability early in life such as polio or post-polio syndrome are living longer than ever before.
• Secondary Conditions:
  People living with the long-term effects of disabilities acquired earlier in life are at-risk of developing "secondary conditions" as they age with their disability.

  Secondary conditions are new health problems, impairments, and functional limitations that occur after the onset of the primary disability and are related to it (directly or indirectly). These secondary conditions can include complications associated with the primary impairment as well as age-related conditions or chronic illnesses (e.g. heart disease, hypertension, osteoporosis, and diabetes). Although these conditions occur in the general population, they may occur more frequently among persons aging with disability because of their reduced mobility and potentially narrower margin of health. Regardless of the exact cause, the significance of secondary conditions stems from their capacity to erode independence, undermine quality of life, and increase need for health-related services.

  The "good news" is that many secondary conditions are preventable through early detection and better self-care practices and health habits. Because of the growing numbers of people at-risk and the "costs" (both personal and societal) associated with these conditions, preventing secondary conditions among the elderly and persons with chronic disabilities has become a major public health goal of the 1990s and beyond.

The Research

This Aging With Disability Study [Variations In Secondary Conditions, Risk Factors And Health Care Needs For Four Groups Of Persons Aging With Physical Disability] was based on research funded by the National Institute of Disability and Rehabilitation Research, U.S. Department of Education. This research seeks to answer questions about the new health problems polio survivors and other persons with physical disabilities experience as they age and what "survivors" can do to help themselves. The report is based upon responses from 120 polio survivors whose average age at acute onset was about 10 years and 73% of whom were hospitalized. A look at this polio sample reveals:

• Average age about 62 years
• 47.5% female: 52.5% male
• 56% currently are married or cohabit
• 78% have attended college

Question 1:

What new health problems and functional limitations do polio survivors report approximately 50 years after acute onset?

1. New Health Problems

   On average, polio participants reported a total of 9 secondary health conditions, but less than one-third of these conditions are considered to be leading causes of death. High frequency chronic conditions reported by the polio sample were as follows:

   Hypertension	48%
   Scoliosis	47%
   High Cholesterol	38%
   Obesity	24%
   Depression	24%
   Respiratory Disorder	24%
   Heart Disease	22%
   Osteoporosis	18%
   Hypothyroid	13%
   Diabetes	11%

2. Functional Impairments

   Level of Functional Impairment Difficulty At Physical Best % At Present Time % MUSCLE WEAKNESS     None or Mild     Moderate     Severe   83% 13%   4%   28% 31% 42% FATIGUE     None or Mild     Moderate     Severe   77% 21%   2%   23% 37% 40% PAIN     None or Mild     Moderate     Severe   71% 25%   4%   19% 51% 30%

   This study also measured both current levels of functional impairment and change in impairment across eight different areas. On average, polio participants reported having current difficulty at the "mild", "moderate", or "severe" levels, with 4.5 of the following functional impairments: muscle weakness, fatigue, pain, breathing, sleep, urinary problems, gait problems and falls. However when current level of impairment was compared to the amount of difficulty respondents experienced at the time of their "physical best" a dramatic difference emerged (see table above). For example, in the area of muscle weakness the percentage of polio survivors reporting "none to mild" dropped from 83% at physical best to only 28% at the present time; whereas, the percentage reporting "severe" difficulty with muscle weakness increased from 4% to 42%. The same pattern also holds for both fatigue and pain.

Question 2:

Who is most "at-risk" for the secondary health problems and functional changes associated with polio?

• Female polio survivors and "non-marrieds" have significantly more health problems and disability days compared to males and survivors who are married or cohabit with a partner.

• High levels of pain and fatigue are significant risk factors for secondary conditions and number of disability days. (A disability day is when all or part of a day is spent in bed due to disability. The national average is 7 disability days in a six month period)

• Survivors whose mobility status changed from "no wheelchair use" to "regular use" have significantly more health problems and disability days than those who either never used a wheelchair or who have always used one.

• Both the number of current impairments as well as an increase in level of impairment are risk factors for greater numbers of health problems

• Self assessed, or perceived, health corresponds closely to objective reports of health status.

Question 3:

What protective influences can we identify that may buffer the impact of "aging" on the health and well being of polio survivors?

1. Informal Social Support (ISS): the number of people providing practical and emotional support.
   • An increase in the number of people providing ISS increases life satisfaction, but only for survivors with "high" levels of current impairment.

   • Women with low levels of ISS appear to assess their health as worse than men with the same low levels of support. (This higher number of respondents approaches significance.)

2. Social Participation: the number of social roles occupied, such as marriage, parent, worker, volunteer, "best friend", religious attendance, support group attendance.
   • An increase in social roles is associated with an increase in life satisfaction, but only for "lower income" participants.

3. Self Management Strategies (SMS): the number of approaches used to manage disability related symptoms may include prescribed medications, over-the-counter medications, lifestyle modifications, relaxation and meditation, stretching, exercise, chiropractic, massage, and support group attendance.

   The "benefits" of SMS appear to differ by marital status. For married survivors, an increase in SMS is associated with increased levels of depressive symptoms. Whereas for non-marrieds, practicing high levels of SMS is associated with lower levels of depression.

4. Religiosity: the presence or absence of current religious affiliation, frequency of attendance, and perceived importance of religion or spirituality in coping with disability.
   • The "benefits" of religiosity on depression appear to differ by support group attendance. An increase in religiosity is associated with a decrease in the number of depressive symptoms, but only for survivors who attend support groups.

The Aging with Disability Study is still in progress. The results of this polio portion will be compared to the results from in-depth interviews with people in three other disability groups: rheumatoid arthritis, stroke and cerebral palsy. Further interpretation will be forthcoming as the research continues.

For more information on the Aging with Disability Study access the Web Site at http://www.usc.edu/dept/gero/RRTConAging/