Symptoms and Quality of Life in Women

Symptoms occur across the trajectory of HIV disease and can diminish the quality of life of women living with the virus. Untreated symptoms may also influence medication adherence and lead to complications of HIV and coexisting illnesses. Symptom management can address these concerns. A variety of self-care approaches should be incorporated into any plan of treatment, which ideally should be based on a partnership between the woman with HIV and her health-care providers. This article will address a range of issues concerning symptoms in women with HIV both in the U.S. and worldwide.

Symptoms and Quality of Life

Women with HIV experience a constellation of symptoms, many of which arise early in HIV infection. Symptoms are defined as any perceptible change in the body or its functions. Symptoms of disease are subjective (perceived by the person with the condition), whereas signs of illness are objective (perceived by another person). The experience of the affected individual is the most important index for understanding symptoms and approaching their management.

Symptoms vary according to the stage of HIV disease and any coexisting illnesses. The essential use of highly active antiretroviral therapy (HAART) and side effects related to the drugs also contribute to their occurrence. Symptoms may affect functional status (ability to perform basic activities of daily living) as well as psychological well-being.

Quality of life (satisfaction with the conditions under which one lives) is also influenced by symptoms and is a frequent outcome measure in research. Several studies have shown that HIV symptom control can improve quality of life for women living with the virus. While quality of life is often assessed in HIV clinical trials and in practice settings, evaluation across the course of disease and in relation to medication regimen is infrequent.

What Symptoms Do Women Experience?

Symptoms in women with HIV may differ from those experienced by HIV positive men. For example, women with lipodystrophy or body fat changes are more likely than men to experience breast enlargement and abdominal fat redistribution, whereas men are more likely to have a dorsocervical fat pad ("buffalo hump"). Women are more likely to have headaches, which are usually poorly identified and poorly managed (see "Headache and HIV" in this issue). Women tend to have more fatigue, which can be related to disease or stress (such as due to childcare), and more abdominal and pelvic complaints that can mimic "normal" female complaints in healthy women. In addition, gynecological symptoms arise early and are often a marker for advancing infection.

Symptoms experienced by HIV positive women in developing countries are remarkably similar to those that affect women in the U.S., although their intensity may be greater. Fatigue, pain, and abdominal problems can be markedly more severe in areas where women lack access to over-the-counter remedies, and where HIV disease tends to advance earlier and progress faster.

Symptoms may be categorized as either physical or psychological; however, the two often overlap. For example, depression in HIV disease is a psychological symptom. Yet experts suggest that brain chemistry and neurotransmitters are linked to depression, so the condition can be considered both a psychological and a physical symptom. Anxiety and sleep disturbances are other examples of symptoms that likely involve both psychological and physical dimensions.

In HIV positive women, psychological symptoms (some of which overlap with physical symptoms) may typically include anxiety, depression, insomnia/sleep disturbances, and changes in body image. Physical symptoms may include diarrhea, nausea and/or vomiting, cough, fever, pain, neuropathy, weight loss, lipodystrophy or body fat changes, rash or other skin problems, and gynecological disorders.

A study published in the September 1, 2004 edition of Clinical Infectious Diseases analyzed the prevalence of clinical symptoms associated with antiretroviral therapy in the Women's Interagency HIV Study (WIHS). Michael J. Silverberg, PhD, MPH, and colleagues from Johns Hopkins University in Baltimore reviewed data collected beginning in April 2000 from 1,256 HIV positive women and 364 HIV negative women at several U.S. sites. In the six months before a study visit, 69% of HIV positive women on HAART, 67% of HIV positive women not on HAART, and 49% of HIV negative women reported having at least one clinical symptom. Symptoms reported by the participants included abdominal pain, diarrhea, anorexia, nausea and/or vomiting, fatigue, fever, body fat changes, body image disturbance, dizziness, headache, paresthesias (numbness or tingling sensations), xerostomia (dry mouth), kidney stones, and skin rash.

The researchers found that women who changed their HAART regimens were more likely to experience any symptom -- particularly diarrhea, nausea and/or vomiting, body fat changes, muscle pain, and paresthesias -- compared with women who remained on stable HAART. The authors concluded that the high prevalence of symptoms in HIV positive women not on therapy and in HIV negative women suggested that antiretroviral drugs were a contributing but not exclusive factor in the development of symptoms.

See the table below for a comprehensive, though not exhaustive, list of symptoms in women. The list is alphabetical rather than arranged by system.

A Systems Approach

Control of symptoms involves interventions to remove their cause as well as palliation (bringing relief without curing). Symptoms in women are often addressed via a systems approach. Affected body systems include the cardiovascular; respiratory; gastrointestinal; gynecological; genitourinary (genitals and urinary tract); dermatological; ear, nose, and throat; hematological (blood and blood-forming tissues); musculoskeletal; and neurological systems. Psychosocial factors, or the influence of social conditions on mental and physical health, may be considered an additional system in terms of management.

Some systems are more likely to be affected by HIV-related symptoms. For example, the gynecological and dermatological systems are often disturbed in women with HIV. Women may also experience symptoms that are not easily classified using a systems approach. Fatigue, depression, and pain are examples of common symptoms in women with HIV whose etiologies (causes) are often complex and may be related to several body systems.

Self-Assessment and Self-Care

Self-assessment and self-care are often vital for women living with HIV. For many women, self-care is the first or only approach to dealing with symptoms. Because women are frequently caregivers, issues related to childcare may limit their ability to focus on their own HIV-related health needs. Several studies of women with children have examined the difficulties these women face in keeping clinic appointments and addressing their symptom management needs. In addition, stigma remains a major barrier to care for women, particularly in southern Africa and Asia.

Some women use a variety of self-care strategies, including complementary therapies, as well as treatments advised by their health-care providers. In many countries where HIV prevalence rates are over 30%, the sole resource may be home remedies. In resource-limited countries, women may use both antiretroviral medications and traditional remedies to cope with symptoms. Although little evidence exists to support the use of traditional or complementary therapies in HIV/AIDS, more data suggesting their importance for symptom control are becoming available.

Marge Miles, PhD, RN, of the University of North Carolina at Chapel Hill and colleagues developed an intervention to assist African American women with symptom management that included education about self-care and medications, as well as regular home visits. Their study, published in the November/December 2003 issue of Nursing Research, showed that women with the intervention had fewer feelings of stigma, higher levels of physical functioning, and less depression and anxiety than women who received standard care.

Symptom Screening and Management

Research-based assessment tools may be helpful not only for routine clinical use by health-care providers, but also for people to comprehensively assess their own symptoms. These self-assessment tools can then be shared with providers to monitor HIV-related symptoms, effects of antiretroviral treatment and complementary therapies, self-care strategies, and progression of illness.

Several valuable symptom assessment and management guidelines exist, including those developed by Lisa Capaldini, MD, of the University of California at San Francisco (UCSF) and published in July 2004 on the HIV InSite web site (see www.hivinsite.org). [Ed. note: Dr. Capaldini is also a member of BETA's Scientific Advisory Committee.]

William Holzemer, PhD, RN, also at UCSF, has developed assessment tools such as the Sign and Symptom Check-List, which covers both signs and symptoms related to HIV and their intensity (mild, moderate, or severe). Holzemer's work has led to the development of a web site (www.aidsnursingucsf.org) that includes HIV Self-Care Symptom Management Guidelines, which were produced with UCSF faculty and students, members of the HIV/AIDS Nursing Research Network, and colleagues in four southern African countries (Botswana, Lesotho, South Africa, and Swaziland). This symptom instrument is available in four languages -- English, Afrikaans, Sesotho (Lesotho), and Siswati (Swaziland) -- so that people living with HIV/AIDS, their formal and informal caregivers, and organizations working with these individuals can manage their illness and related symptoms. Although developed for use with both women and men, the manual addresses many symptoms that occur solely in women (e.g., vaginal symptoms) or are more prevalent in women (e.g., anxiety, depression, fatigue, sleep disturbances).

As a self-care tool for BETA readers, a quick reference catalogue of symptoms occurring in women, their causes, and strategies to minimize them is available on the following pages. Also, see the sidebar on this page for a list of web sites providing more information on symptom screening and control in women with HIV.

Summary

Because HIV is an illness that requires ongoing, routine management and evaluation, women must be vigilant about cues to their health. Women often lack a clear understanding of why symptoms arise or the likely course they may take. Some symptoms may be subtle and require careful follow-up and communication between the woman and her providers to track changes over time. For women as well as men, developing a partnership and sharing observations about symptoms with health-care providers is an important aspect of HIV self-care.

Selected Sources

1. Anastasio, C. and others. Self-care burden in women with HIV. Journal of the Association of Nurses in AIDS Care 6(3): 31-42. 1995.
2. Association of Nurses in AIDS Care. Symptom Management Booklet. Akron, Ohio. 2004.
3. Bova, C. and Durante, A. Sexual functioning among HIV-infected women. AIDS Patient Care and STDs 17(2): 75-83. 2003.
4. Corless, I.G. and others. Self-care for fatigue in HIV disease. Oncology Nursing Forum 29(5): E60-69. 2004.
5. Grossman, H.A. and others. Quality of life and HIV: current assessment tools and future directions for clinical practice. AIDS Reader 13(12): 583-590; 595-597. 2003.
6. Holzemer, W.L. HIV and AIDS: the symptom experience: what cell counts and viral loads won't tell you. American Journal of Nursing 102(4): 48-52. 2002.
7. Holzemer, W.L. HIV Self-Care Symptom Management Guidelines. www.aidsnursingucsf.org. Accessed December 12, 2004.
8. Kirksey, K.M. and others. Complementary therapy use in persons with HIV/AIDS. Journal of Holistic Nursing 20(3): 264-278. September 2002.
9. Miles, M.S. and others. An HIV self-care symptom management intervention for African American mothers. Nursing Research 52(6): 350-360. November/December 2003.
10. Nicholas, P.K. and others. Self-care management for neuropathy in HIV disease. AIDS Care 14(6): 763-771. 2002.
11. Nicholas, P.K. and others. Lipodystrophy and quality of life in HIV: symptom management issues. Applied Nursing Research. In press, 2005.
12. Portillo, C.J. and others. Physical and mental fullness as descriptors that influence sleep in women with HIV. Holistic Nursing Practice 17(2): 91-98. 2003.
13. Silverberg, M.J. and others. Prevalence of clinical symptoms associated with highly active antiretroviral therapy in the Women's Interagency HIV Study. Clinical Infectious Diseases 39(5): 717-724. September 1, 2004.