"I've had a disability for 45 years and I'm dealing with it just fine. But what's with all this new stuff, all these aches and pains? Breathing is getting worse, circulation is getting worse, bladder is giving me problems now. I'm too young to be feeling so old." [45-year-old woman with a neuromuscular disorder]
The Centers for Disease Control and Prevention has funded a cadre of researchers to study the onset of new health problems among people with physical disabilities. These studies have begun to shed some light on the types of conditions people with disabilities experience as they age and on secondary prevention, that is, ways in which people with disabilities can get information on their options for medications, therapies, or lifestyle changes that could help them avoid acquiring new health problems that may or may not be directly related to their primary disability. Not much is known, however, about how the course of disability can lead to chronic conditions among women. In our survey, we gave a list of 15 chronic health problems that have been discussed in the literature and asked the participants to indicate which ones they have experienced. We analyzed the prevalence of each condition among the women with disabilities compared to the women without disabilities. For some of the conditions that were significantly more prevalent among women with disabilities, we examined factors that may distinguish those who have the condition from those who do not.
Results
Women with physical disabilities reported chronic conditions more often than the comparison group without disabilities, and at younger ages. As women with disabilities age, a greater number of them report having chronic conditions than women without disabilities. Significantly more women with disabilities reported having chronic urinary tract infections (18 percent), major depression (17 percent), osteoporosis (12 percent), restrictive lung disease (6 percent), inflammatory bowel disease (6 percent), heart disease (5 percent), seizure disorder (5 percent), and kidney disease (3 percent) than the able bodied comparison group.
Urinary Track Infection
Although chronic urinary tract infection was more prevalent among women with disabilities than women without disabilities, it was associated primarily with disorders characterized by neurogenic bladder, such as spinal cord injury (35 percent), multiple sclerosis (30 percent), and cerebral palsy (17 percent). However, 6 percent of women with polio had chronic UTI despite a presumably neurologically intact bladder. Factors that promote urinary tract infection in women with mobility impairment need further investigation, but may include difficulty in maintaining adequate cleanliness, restricting fluid intake to reduce the number of trips to the rest room or avoid searching for accessible rest rooms, contaminated catheterization, infrequent urination, and excess sweating with prolonged sitting in a wheelchair.
Depression
The rate of diagnosed major depression was significantly higher for women with disabilities between the ages of 18 and 49 compared to younger women without disabilities. Among women age 50 or older, there was no difference between the two groups. The rate of depression was significantly different by disability type. The highest rate was in women with spina bifida (39 percent), with 25 percent or more in women with amputation, traumatic brain injury, and multiple sclerosis. The lowest rate was in women with spinal cord injury. There is a need for a more thorough investigation of depression in this population. Previous studies have used measures of depression that contain questions about fatigue and weakness, symptoms that, for women with physical disabilities, may be more reflective of the disability itself than of depression. We need to gain a better understanding of the role social support, social attitudes, and environmental barriers might play in engendering feelings of being devalued and overwhelmed by life that can lead to clinical depression.
Osteoporosis
Lack of weight-bearing is a known risk factor for osteoporosis. Therefore, we predicted that women with mobility impairments would be at increased risk of getting osteoporosis at an earlier age. Most women are unaware that they have osteoporosis until spinal fractures are detected or they acquire fractures during a fall or while conducting ordinary daily activities. Therefore, it is remarkable that osteoporosis had already been diagnosed in women in their 30's with disabilities in our study. In this study, the women with disabilities had seven times the risk of getting osteoporosis as the women without disabilities. Research is needed on treatment that would delay the onset of osteoporosis among susceptible women with disabilities as well as on the most efficacious treatment to arrest its progress in the early stages in this population. Information on the osteoporosis experienced by younger women with mobility impairments may emerge from the medical experiments done by NASA's space program. Researchers have observed that immobilization produces a similar pattern of bone density loss as micro-gravity.
Heart Disease
The leading cause of death in women, like men, is coronary artery disease. Having a primary disability such as spinal cord injury, cerebral palsy, muscular dystrophy, or amputation does not exempt women from also acquiring heart disease. However, physicians are more likely to attribute symptoms suggesting angina in women to non-cardiac causes. When a woman also has a disability, the physician may be more likely to assume that chest pain and other symptoms are related to her underlying disabling condition. If the woman has impairment of sensation, she may experience silent ischemia, a phenomenon also noted in advanced diabetes. Other women with disabilities have atypical, nonspecific symptoms like indigestion. The disabling effects of heart disease may compound those from the primary disability, increasing total functional disability. The few studies of heart disease in people with disabilities have used primarily male subjects. Is cardiovascular disease as rare in premenopausal women with disabilities as it is in premenopausal women without disabilities?
Among the 881 respondents, 33 women self-reported having heart disease, including 23 of the 475 (5 percent) women with physical disabilities and 10 of the 406 (2.5 percent) of those without disabilities. The difference in prevalence of heart disease between these two groups approached significance when examined for all age groups. As age increased, both groups experienced an increase in risk of having heart disease. There was no difference in prevalence of heart disease when post-menopausal women with and without disabilities were compared. However, among pre-menopausal women aged 18-49 years, the number of cases of heart disease was significantly higher among women with disabilities; 17 (5 percent) of women with disabilities reported heart disease compared to 4 (1 percent) of the able-bodied comparison group.
Further studies are needed to investigate the association of known risk factors for heart disease among women with disabilities. Several factors are known to increase the risk for acquiring or accelerating the onset of coronary heart disease, but with worse outcomes in women. These risk factors include diabetes mellitus, smoking, hypertension, physical inactivity, obesity, high cholesterol, low levels of high density lipoproteins, or HDL and post-menopausal status. Although these same risk factors can be expected to promote heart disease in women with disabilities, there has been no examination of the extent to which the additional presence of disability and limitations in the ability to exercise effectively may increase the degree of risk. Does having other chronic conditions also increase or change the risk profile of women with disabilities? Do women with disabilities have other risk factors for heart disease that are not found among women without disabilities?
Conclusion
Urinary tract infection, depression, osteoporosis, and heart disease are health problems that are faced more often by women with certain physical disabilities than by women without disabilities. It would not be fair to say that these conditions are entirely preventable; however, it is very possible that rates could be reduced by informing women with disabilities about their increased risk and offering suggestions on what they could do to reduce their risk or delay the onset of diseases of aging. When we presented our findings on chronic conditions to a group of physicians, the response was essentially a lack of surprise. The medical profession has, for many years, understood that these conditions are an inevitable consequence of physical disability and not enough is known about how to alter the course. The message we received from our participants was that they are not content to live with such resignation. They want information and they want solutions. Much more research is needed before we can make specific recommendations on how chronic conditions can be prevented in women with physical disabilities. The Center for Research on Women with Disabilities was fortunate to receive new funding in 1996 from the National Institutes of Health to pursue some of this research, particularly as it relates to strategies used by women with physical disabilities to avoid chronic conditions and maintain good health. It is our hope that other researchers, clinicians, and health educators will take an increased interest in some of these questions and assist in expanding the body of health information available to women with disabilities.