In Touch
A Publication of the
Jacobs Institute of Women's Health

September 1996 - Volume 4, Number 3

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Chronically Ill or Disabled Women Face Basic Health Care Issues

Women with chronic illness or disabilities may face more problems than most women, including more difficult access to health care, according to Sandy Welner, MD. Some 43 million Americans have disabling conditions and, despite the advances fostered by the Americans with Disabilities Act (ADA), many barriers to adequate health care remain. Dr. Welner spoke at the Jacobs Institute's July 24 breakfast seminar, "Living Well Despite Chronic Illness or Disability."

Access to health care is especially and ironically difficult: if a woman with disabilities can't even get into a facility, it suggests she can't get good health care there. Some problems are specific to the physical facilities. A classic example is whether the exam table is low enough (ideally, 19 inches high) so that the woman with disabilities can get on it without assistance.

Typical medical issues that raise problems for such women are primary care services such as preventive screening for hypertension, diabetes, hypothyroidism, and hyperlipidemia. Women with disabilities may have such overwhelming disabling medical problems that sometimes basic screening--including pelvic exams--is overlooked.

Screening for breast cancer can be problematic for similar reasons. Dr. Welner observed that she has often seen reports citing "inadequate mammogram due to patient's underlying physical condition"--that is, because the patient was unable to lift her arms and lean her body forward in a certain way, or because the equipment requires the patient to stand. Dr. Welner pointed out that one new mammography system has a chair which moves to tilt the patient to the right position. Another new technique involves the adjunctive use of three-dimensional ultrasound, which in conjunction with a less than perfect mammogram can help obtain a clearer picture. "I'm really excited about the possibilities this opens up for improved screening for breast disease in women with disabilities," she said.

Another common medical oversight involves contraception. Dr. Welner pointed out that physicians have to realize that women with disabilities are still women. "Some disabled patients don't realize they can get pregnant," she said. "Some physicians don't think to ask about contraception, figuring the disability automatically means the woman is not sexually active." Sexual counseling and issues of body image and self esteem can be especially important.

There are potential medical complications as well: for example, because mobility impairments tend to increase the risk of thrombotic complications due to increased venous pooling in dependent lower extremities, for example, combination oral contraceptives raise the risk of thrombosis. So physicians may want to discuss the advantages of injectable contraceptives and implants for such women.

Treatment of urinary tract infections and vulvovaginitis can be much more complicated for wheelchair users. Lesions from sexually transmitted diseases can be difficult to read. The estrogen that women with lupus take can also lead to thrombotic complications.

And when it comes to pregnancy, it is commonly assumed that a woman with either a chronic illness or a disability has no need of infertility counseling or will want to have an abortion if she becomes pregnant. Access to prenatal care can be delayed. And when a pregnancy is carried to term, it may be difficult for the woman to detect premature labor. Dr. Welner offered the audience a "mini course" reviewing spinal physiology with reference to pregnancy. Some disabilities produce autonomic reactions; for example, autonomic hyperreflexia can be confused with preeclampsia, which can lead to problems if not diagnosed properly.

Menopause presents the same problems as for other women. In addition, problems specific to the disabled or chronically ill woman can include osteoporotic vertebra (due to a lack of weight-bearing bone structures), soft tissue problems, and concern about prescribing appropriate levels of estrogen therapy (because of the potential for thrombotic complications).

Dr. Robert H. Phillips, a psychologist who specializes in coping techniques, stressed that, in many cases, people have not seen the need for the disabled to learn how to cope. "But women with disabilities are normal people trying to live with abnormal situations," he said. He offered the audience some mnemonic devices to raise awareness of some of the factors affecting women with disabilities and chronic illnesses, as well as resources to aid them in coping. SPEAK refers to social, physical, emotional, activity, and kin factors; SPIRIT covers resources such as support groups, professionals, interfamily improvement, resources, information, and techniques.

Dr. Phillips highlighted particularly the importance of family and peer support, and the necessity of being able to pinpoint what is causing stress at a given time (e.g., depression over handling the disability or illness daily, fear of being unable to be self-sufficient). Most important, he said, is that the chronically ill or disabled woman take responsibility and learn what she can do to deal with the problem. As an example, he cited statistics indicating that people living with chronic illness or disabilities tend to be just a little more nervous than others. Dr. Phillips noted that relaxation techniques can combat that, feeling and then led the audience in practicing a brief relaxation technique.

"Success in living with the problem has more to do with the way you think, with what you expect, than any other factor," he emphasized. The repetition of realistic thoughts makes them believable expectations. Women coping with disabilitiesand techniques and chronic illness need to keep an open mind to anything that might help. Dr. Welner concurred, pointing out the many successes with alternative therapies ranging from acupuncture to cognitive therapies.  up_arrow.gif (847 bytes)


Breast and Cervical Cancer Screening Still Inadequate

Many women still do not receive preventive screening services that can reduce morbidity and mortality from breast and cervical cancers. One reason is that the very programs that could most effectively increase screening rates have had to limit recruitment because their clinical services are saturated.

In a two-part Jacobs Institute study sponsored by a grant from The Commonwealth Fund, Claudia J. Vellozzi, MD, Martha C. Romans, and Richard B. Rothenberg, MD, contend that lack of financial resources is a major factor behind the enormous unmet need for screening services. Because funds are tight, programs may not be able to both publicize the availability of screening services and provide them to all eligible women. "Delivering Breast and Cervical Cancer Screening to Underserved Women: Part I," and "Part II: Implications for Policy," were published in the March/April and July/August editions of Women's Health Issues. The information presented here also appeared in The Commonwealth Fund Quarterly (Summer 1996, Volume 2, Issue 2).

The first phase of the study involved a literature review and telephone survey of 61 preventive screening programs aimed at underserved populations of women--primarily those who are over age 50, have low incomes, are members of racial and ethnic minority groups, live in rural areas, or are undereducated. These women are also likely to be underinsured; as a whole this group has been shown to receive fewer preventive services.

The programs' recruitment strategies fell into six broad categories: 1) information management systems, 2) integration of preventive health services at primary care sites, 3) mobile mammography units and mobile clinics, 4) community-based outreach, 5) mass media, and 6) personalized communications.

Different strategies were effective for different groups of women. For encouraging preventive screening across the entire spectrum of underserved groups, information management systems achieved the most consistent results. The Colorado Department of Health, for example, uses a statewide computerized system to track the screening status of more than 150,000 women for their lifetimes and issues reminders to mammography providers. For reaching more narrowly defined groups, mixed strategies were more effective. Integration of preventive services at primary health care sites and community-based outreach programs, for example, were effective in recruiting poor, elderly, African-American and Hispanic women.

The second phase involved on-site interviews with directors and staff at seven preventive screening sites chosen for their success with the target population. Although these programs had been successful in increasing the use of screening services, a large proportion of the targeted groups were still not screened. Part of the problem, the researchers contend, is barriers created by conflicting eligibility requirements.

Until programs have funds to make clinical preventive services available to all who need them, bringing together the other components of a comprehensive breast and cervical cancer screening program--outreach, diagnostic and therapeutic services, and information management systems--will be a challenge.  up_arrow.gif (847 bytes)