II. Approach To The Patient

Jean R. Anderson, MD

The woman with HIV infection is indistinguishable from most women seen in primary care today. Women with HIV cover the spectrum of age, color, geography, education, cultural background, and income level, and have all of the health and lifestyle concerns any other woman has, in addition to those related to HIV. She is often asymptomatic, and may not know she is infected. She is frequently a mother and a caretaker for other family members. The issues most important to her will be those shaped by her personal circumstances — HIV is part of these circumstances, but her own perception of how big a part will vary from woman to woman and from time to time. The health care provider–patient relationship begins with where the individual woman is. To be most effective, it must become a partnership based on mutual trust and respect.

This chapter reviews general guidelines for interaction with all patients, highlighting points that are particularly relevant to women with HIV infection, and provides an overview of the initial and ongoing medical and psychosocial evaluation.

General Guidelines  TOP

A. COMMUNICATION

The initial interaction of patient and provider should begin with introductions and from there, it should be highlighted with clear and nonjudgmental communication. Language and terminology used should be sensitive, inoffensive, and easily understood by the patient. This will vary depending on the patient’s age, cultural background, and level of education. Translation will be needed for women unable to adequately understand or express themselves in the language of the medical provider.

Whenever possible, questions should be asked in an open-ended manner, including questions about behavior and treatment adherence, and the woman should be given permission to be honest and to acknowledge failure in terms of relapse or nonadherence. She should be given adequate time and opportunity to ask questions and express concerns.

Women undergoing gynecologic exams often feel special anxiety, vulnerability, embarrassment, or simply fear of discomfort or the discovery of pathology. This anxiety and vulnerability may be particularly pronounced in women with history of sexual abuse, rates of which are increased in some popluations of women living wth HIV. It is important to adequately prepare each woman verbally for the exam, and visually as well, if possible, showing her charts, models, or equipment (such as specula), which may demystify the whole process. Explain what will be done and why, as well as the degree of discomfort to be expected. During the exam tell her what you are going to do before doing it, describe what you see or feel, and reassure her when findings are normal.

Do not underestimate the importance of nonverbal communication. Facial expression and body posture are often far more articulate than words, and the most effective providers are sensitive to these cues and use their own body language with care. Maintaining frequent eye contact encourages the patient’s candor, builds rapport and trust, helps allay embarrassment and fear, and conveys your interest and attention. The gynecologic exam may need to be postponed until a subsequent visit in some women in order to develop trust and to ensure there is adequate time for those with special anxiety about the exam.

Patients should be given written instructions on how to reach their providers when there are problems or questions and how to make appointments. Whenever possible, written information about HIV and its treatment, and other health issues, should be available to supplement face-to-face discussions.

B. RESPECT

Every person deserves respect. Do not be condescending, patronizing, or judgemental. Under no circumstances should a patient ever be treated as a sexual object, particularly when assessing risk behaviors or performing the pelvic exam. Although different circumstances may dictate different levels of formality, addressing the patient by her first name (without her express consent) or, especially, by terms of familiarity (e.g., “honey” or “dear”) is usually inappropriate and often offensive.

Respect for the individual includes respect for her beliefs and values. The use of complementary therapies among HIV-infected individuals is common and should be respected, not ridiculed, even while discouraging potentially harmful remedies and emphasizing the proven effectiveness of currently recommended regimens.

C. SENSITIVITY

Sensitivity is essential to gather and impart important information, to foster trust, and to ensure ongoing follow-up. It requires attention to how words are used and questions are asked, and to a great deal that is unspoken. Responding to a patient’s fear, anxiety, denial, or anger is inevitably part of the health provider’s role and requires consideration of more than a disease process, but of a whole person and the entire context of her life. Any chronic and life-threatening disease carries with it an enormous burden of vulnerability and loss of control. Anything the provider can do to give back some control to the woman will help ease that burden. The importance of adherence to antiretroviral regimens for optimal effectiveness and to reduce the development of drug resistance has been well established. Allowing the patient to be involved in choosing her treatment regimen when possible will allow her values and lifestyle (job schedule, etc.) to be considered and is believed to enhance adherence. Understanding her cultural background enhances your sensitivity. For example, involvement of the patient’s spouse or mother during visits may be particularly important and reassuring for Hispanic women.

D. CONFIDENTIALITY

Confidentiality is a major cornerstone of the therapeutic relationship. It carries special meaning for HIV-infected individuals who have experienced discrimination in the workplace and other settings, stigmatization, and occasional abandonment by friends or family. HIV-positive women may be particularly vulnerable to these effects because of lower economic status, cultural traditions and general societal beliefs about the role of women, minority status, and child care or other caretaking responsibilities. Information about a patient’s HIV status or details about her medical condition should be kept strictly confidential by providers and shared only with the express permission of the woman herself. At the same time she should be encouraged and assisted in disclosing her status to others who need to know, i.e., sexual partners and health care providers. It is important to note that all states are required to report cases of AIDS and some also have mandatory HIV reporting. The need to report and the safeguards (such as anonymous reporting in some states) which are in place should be discussed with each woman.

Evaluation of the HIV Infected Women  TOP

A. TEAM APPROACH

Because of the medical and social complexity of HIV disease, a team approach to the care of women with HIV is essential and care should be both coordinated and integrated with different members of the team. Furthermore, as the time available for the primary care provider to spend with each patient becomes increasingly limited, the role of other team members in assistance with education and support becomes even more important. Expertise needed includes HIV medical expertise (including management of antiretroviral regimens), gynecology, nursing, counseling, and social service assistance/case management. Throughout the course of HIV infection, multidisciplinary medical collaborations should be available for evaluation and management of the varied medical problems associated with HIV. The use of peer counselors may be especially helpful as women deal with negotiating safer sexual practices, contraception and other reproductive concerns, medication adherence, and other issues where similar cultural background and personal experience with HIV may facilitate education and candid discussion.

B. HIV EXPERIENCE

Care by a medical provider with HIV experience is one of the few specific provider or health care system-related factors that has been shown to prolong the life of HIV-infected individuals (Kitahata, 1996; Laine, 1998). This is increasingly important as antiretroviral treatment becomes steadily more complicated and recommendations change almost monthly. Awareness of drug interactions and strategies to avoid the development of antiretroviral resistance are but two issues that have a significant impact on both the short- and long-term health of the HIV-positive individual. Primary providers with little or no HIV experience should link with providers with HIV expertise to provide optimal care by referral or regular consultation. If a woman requires referral to an HIV expert, it is important that the primary care provider assure the woman that she is not being abandoned; furthermore, as women live longer with HIV, the primary care provider’s involvement in caring for other medical conditions remains critical for the overall health of the woman. Current U.S. Public Health Service treatment guidelines, several as living documents with regular online updating, can be accessed at http://www.aidsinfo.nih.gov. The Health Resources and Services Administration also supports the AIDS Education and Training Centers warmline (1-800-933-3413), which is a resource for clinical providers needing expert consultation.

C. CULTURAL SETTING AND BACKGROUND

The ability to give optimal patient care depends on an understanding of where the patient “begins,” her traditions and beliefs. These affect her understanding of health and disease and her acceptance of conventional medical treatment, as well as possible reliance on alternative or complementary therapies. These also affect her view of herself as a woman, her role and responsibilities in society, and issues related to childbearing and contraception. Potential barriers to care that may be encountered include difficulties in speaking, understanding, or reading English, culturally based fears and mistrust of the health care system, and undocumented immigration status.The role of cultural sensitivity in the care of HIV-positive women will be more fully addressed in Chapter VIII on Psychosocial and Cultural Considerations.

D. SPECIAL POPULATIONS

In addition to cultural setting or background, women living with HIV/AIDS may have other life circumstances that require special approaches to care and unique sensitivity. These include incarcerated women; women with alcohol or drug addiction; women with psychiatric illness; lesbians and transgendered women; women who are victims of domestic violence; and others. Certain circumstances may arouse strong emotions in care providers because of the provider’s own background or beliefs. It is essential that the provider be willing and able to separate themselves from whatever personal connotations or associations they may assign to certain lifestyles or life circumstances, and provide care that is unbiased, sensitive, kind, and empathetic. If this is not possible, the patient should be referred to another provider who can give such care.

E. SPIRITUALITY

The spiritual dimension of a person’s life encompasses her beliefs and values and what gives her life meaning and a sense of wholeness (Puchalski, 2000). Spirituality is important throughout life, during both health and illness, and an individual’s beliefs and values can have a profound effect on the way she views illness and its treatment. Some women may view HIV as a punishment and this belief may lessen their acceptance of treatment or may put them at risk of nonadherence. Major spiritual questions that often arise during illness are:

• What gives my life meaning?
• Why is this thing happening to me?
• How will I survive this loss?
• What will happen to me when life ends?

It is important that the health care provider consider spirituality as an important component of physical, emotional, and mental health, assess the woman’s beliefs, and learn what is important to her. The spiritual history should include specific questions about the patient’s faith or beliefs, the importance and influence of these in her life, her involvement in a spiritual or religious community and its importance to her, and how the health care provider can help address these issues as part of her health care. Spirituality should be addressed as an ongoing issue, and referrals to ministers, priests, rabbis, other spiritual guides, or similar community resources can be an important component of care. The provider’s own spiritual beliefs can be a source of strength personally and can enhance the patient-provider relationship, but should not be imposed on the patient — her own beliefs should be respected.

F. IDENTIFYING SUPPORT SYSTEMS AND DISCLOSURE

During the initial evaluation, the HIV-infected woman’s social and emotional support system should be identified and reinforced, and updated information about this support system should be obtained at each visit. To whom has she disclosed her HIV status and what was the response? Many HIV-positive women experience feelings of guilt and shame, or are fearful of violence or abandonment, and so are reluctant to trust anyone with knowledge of their infection or their feelings about it. Many communities still attach enormous stigma to HIV and the individual woman’s fears about ostracism and abandonment should be openly addressed. Their sense of isolation is harmful to both their physical and emotional well-being, and may result in avoiding clinic visits and nonadherence to drug therapy. The use of peer advocates or support groups may offer additional support for many women with HIV.

Special issues involve disclosure to sexual partners, children, and other health care providers. Disclosure to those individuals who may be at risk for transmission of HIV from the patient should be encouraged and barriers to disclosure, such as fear of violence, should be identified and addressed. The provider should offer assistance with disclosure when appropriate. Disclosure of a mother’s HIV status to her children, who may or may not be infected themselves, is a personal decision and should be honored. The provider should discuss the various considerations in this decision and offer assistance if needed.

G. LIMITED RESOURCE SETTINGS

Currently, in limited resource settings the foundations of HIV care are services to provide basic medical care, treat sexually transmitted infections (STIs), identify HIV infection through voluntary counseling and testing (VCT), and provide primary and secondary HIV prevention services, including prevention of mother-to-child transmission. Prevention and treatment of TB and other opportunistic infections are needed as patients with HIV become more immunosuppressed, but require greater resources in terms of medications, laboratory monitoring, patient and provider education and training, and community engagement. In settings with few resources the ability to use antiretroviral drugs is still limited by issues of cost, accessibility, and health care infrastructure, but this is beginning to change with the growing global consensus that there is a moral imperative to provide these life-sustaining therapies. The Clinical Services Pyramid (Figure 2-1) (JSI/WEI Center for HIV/AIDS. 2001) illustrates the inter-relatedness of the community, laboratory infrastructure, and patient and provider education that is essential at all levels of HIV care. These components of the health care system must exist and be strengthened for both prevention and care and treatment services to succeed and use of anti-retroviral therapy (ART) to reach those most in need.

Figure 2-1
Clinical Services Pyramid
 

Source: John Snow, Inc./World Education, Inc. Center for HIV/AIDS. Boston, MA 2001.

H. MEDICAL EVALUATION

Initial Evaluation

The initial evaluation of an HIV-infected woman should include a comprehensive medical assessment, including a detailed HIV history: date of diagnosis, possible routes of exposure, HIV-related symptoms or opportunistic infections, previous antiretroviral or prophylactic therapies, disclosure history, and support systems (see above). Prior antiretroviral treatments should be documented in as much depth as possible, including specific medications, length of treatment, side effects or complications, response, results of resistance testing, if done, and adherence. Current employment, relationship status and child care responsibilities, insurance status, and drug and alcohol abuse must all be considered in decision making about further therapeutic regimens. A comprehensive gynecologic history should be obtained, including menstrual history, sexual practices, contraception and condom use history, previous sexually transmitted and other genital tract infections, prior abnormal Pap smears, and other gynecologic illnesses or symptoms. The initial physical examination should include a baseline pelvic exam with Pap smear and other studies as needed based on history and physical findings. Various studies (Anderson, 1989; Frankel, 1997; Minkoff, 1999) have found that both prevalence and incidence of gynecologic problems are high in HIV-infected women throughout their disease course.

This initial assessment should take place over several closely spaced visits. This will allow the woman and her clinical care team to become familiar with one another and to develop the trust and partnership that will form the foundation of her ongoing care. This is particularly important for the woman with newly diagnosed HIV, who is often struggling with the shock, fear, denial, and despair that accompany the discovery of a life-threatening illness; she should be given the opportunity to assimilate information about HIV and her own clinical status in small bites.

Follow-Up Visits

Follow-up visits should be scheduled at intervals based on the woman’s HIV clinical, immunologic, and virologic status; other medical or comorbid conditions, including substance abuse or mental illness; and other individual needs for counseling or psychosocial support. CD4 cell counts and HIV-RNA levels should be monitored at 3–4-month intervals and more often if results suggest inadequate or failing therapeutic response, or with development of clinical signs or symptoms. At each interval visit the woman should be questioned about new symptoms, side effects, adherence with medications, and psychosocial issues and concerns. Last menstrual period should be documented, as well as current sexual activity and interval use of condoms and contraception. Risk behaviors should be reassessed at regular intervals because sexual and drug-use patterns may vary, and safe practices should be reinforced through positive prevention counseling. (CDC, 2001). Pelvic examination should be repeated at least annually, and more frequently with history of abnormal Pap smears, unsafe sexual practices, exposure to STIs, or development of gynecologic signs or symptoms. STI screening should be performed when the patient reports recent or ongoing high-risk sexual activity. Pelvic examination every 6 months may be considered in women with clinically advanced disease, low CD4 cell counts, and/or high viral loads because their incidence of certain HIV-related gynecologic problems may be increased. The medical and gynecologic evaluation of the HIV-infected woman is described in more detail in Chapter IV on Primary Medical Care and Chapter VI on Gynecologic Problems.

I. FAMILY-CENTERED CARE

HIV is a disease of families. Not only may the woman be infected, but her husband or partner and children may also be living with HIV. Even when other family members are not infected, they are deeply affected by the presence of chronic and life-threatening illness within the family, possible fears of transmission of infection, and often stigma. The HIV-positive woman may neglect her own care while providing care to sick family members or to her children. The provider should encourage all HIV-positive family members to receive appropriate care and should help enlist family support for the infected woman by providing information and education about HIV and updates on the woman’s condition (with her permission) and by assistance in identifying support systems for the entire family.

J. EDUCATION AND COUNSELING

Despite the dramatic advances in therapy, decreases in mortality and hospitalizations, and overall improvement in quality of life, HIV remains a life-threatening and often life-ending disease with no cure on the horizon. For women it is often enveloped by poverty; isolation; person, partner, or community drug use; and the competing priorities of children and family. Mental illness, substance abuse, or domestic violence may complicate the clinical picture. Not dissimilar to diabetes, modern management of HIV disease requires a basic understanding of HIV infection and an intense personal involvement in one’s own care — taking multiple medications on fairly strict schedules, food requirements, recognizing and managing side effects, etc. Unlike most other chronic medical conditions, HIV-positive individuals remain infectious for the rest of their lives and must learn about and become empowered to change behaviors that put themselves or others at risk. This learning process is ongoing and lifelong and requires continuous reinforcement. It should aim to correct misconceptions and myths and should recognize that relapses in unsafe sexual or drug-using behaviors and at least episodic problems with adherence are the norm rather than the exception. Peer advocates (HIV-affected women from similar cultural backgrounds) can be effective members of the clinical team to help educate patients, advocate for them, and provide counseling as needed.

K. ACCESS TO CARE

A recent report from the HIV Cost and Services Utilization Study, using a national sample representative of the adult U.S. population infected with HIV and in ongoing care, found significant variations in service utilization and receipt of medication. Women were more likely than men to use the Emergency Department and to be hospitalized and were less likely to have received antiretroviral therapy including a protease inhibitor or nonnucleoside reverse transcriptase inhibitor by early 1998. Other predictors for poor access to care included racial or ethnic minority status and lack of insurance (Shapiro, 1999). If women with HIV are to benefit equally from the advances in understanding and management of this infection, attention must be paid at the individual, community, and societal levels to the factors hindering equal access to care: stigma and isolation, lack of empowerment, competing concerns (e.g., food, housing, care for other family members), child care, transportation, insurance, violence against women, and many more.

The Chronic Care Model  TOP

The Chronic Care Model (http://www.improvingchroniccare.org) was developed and refined by experts in chronic illness management to encourage high quality chronic disease care. It can be applied to a number of chronic illnesses, including HIV/AIDS. The Model identifies the key elements in the system of care that can help patients be healthier, providers more satisfied and that can help reduce costs of care throughout the system. These elements include (Figure 2-2):

Figure 2-2
Overview of the Chronic Care Model

Source: Wagner, 1998. Copyright American College of Physicians. Reprinted with permission. Available online.

A. COMMUNITY-RESOURCES AND POLICIES

Community programs can support and extend the care for individuals with HIV/AIDS. They can provide resources and support, promote better self-care, and play a broader role in advocacy for patients and for health policies that can better support the lives of individuals with HIV/AIDS.

B. HEALTH SYSTEM-ORGANIZATION OF HEALTH CARE

The health system caring for patients with HIV/AIDS should be organized in such a way that there is flexibility and ability to change, that there are appropriate resources and support for providers and patients, and that there is an emphasis on prevention and maintenance, rather than crisis-oriented care.

C. DECISION SUPPORT

Treatment decisions should be founded on evidence-based guidelines. Clinical providers for individuals with HIV/AIDS need ongoing education and training to remain current, because of the rapid changes in knowledge and practice. Primary care providers for patients also should be kept informed and involved when patients are referred for specialist care.

D. DELIVERY SYSTEM DESIGN

The health care delivery system should be proactive and should focus on keeping patients as healthy as possible. This requires determining what care is needed, clear delineation of roles different members of the team play in care, ensuring that team members have current information about patient status, and facilitating follow-up as a part of standard care.

E. SELF-MANAGEMENT SUPPORT

Successful HIV care depends on a well-informed and motivated patient. Although care providers are responsible for appropriate prescribing of antiretroviral drugs and can facilitate adherence, ultimately the woman herself must take the medications properly and return for regular care and follow-up. It is essential that patients be given the tools to better care for themselves, including information about how to take medications, recognition of adverse effects, and tools to minimize or prevent side effects. Patients should have a central role in making decisions about their care and in problem-solving; this will foster a sense of collaboration, trust, and responsibility. Patient involvement in self-management of other chronic diseases has been shown to reduce emergency and other outpatient visits, decrease health distress, and improve self-efficacy (Bodenheimer, 2002)

F. CLINICAL INFORMATION SYSTEMS

Information systems are essential to track individual patients and populations of patients with HIV/AIDS, and clinical information technology can help prevent serious errors in care, such as medication errors (Bates, et al, 1998). A meta-analysis of published reports of interventions used in management of patients with other chronic illnesses found that education of providers and feedback and reminders to providers significantly increased provider adherence to treatment guidelines and improved disease control (Weingarten, 2002).

References  TOP

Anderson J, Horn J, King R, et al. Selected gynecologic issues in women with HIV infection. Int Conf AIDS 1989 June 4–9; 5: 760 (abst # Th.D.P.10).

Bates DW, Leape LL, Cullen DJ,et al. Effect of computerized physician order entry and team intervention on prevention of serious medication errors. JAMA 1998;280:1311-1316.

Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient self-management of chronic disease in primary care. JAMA 2002;288:2469-2475.

CDC. Revised guidelines for HIV counseling, testing and referral. MMWR 2001;50:RR-19:1-58.

Frankel R, Selwyn P, Mezger J, Andrews S. High prevalence of gynecologic disease among hospitalized women with human immunodeficiency virus infection. Clin Infect Dis 25:706–12, 1997.

Kitahata M, Koepsell T, Deyo R, et al. Physicians’ experience with the acquired immunodeficiency syndrome as a factor in patients’ survival. N Engl J Med 334:701–6, 1996.

Laine C, Markson L, McKee L. The relationship of clinic experience with advanced HIV and survival of women with AIDS. AIDS 12: 417–24, 1998.

Minkoff HL, Eisenberger-Matityahu D, Feldman J, Burk R, Clarke L. Prevalence and incidence of gynecologic disorders among women infected with human immunodeficency virus. Am J Obstet Gynecol 180: 824–36, 1999.

Puchalski CM, et al. Taking a spiritual history allows clinicians to understand patients more fully. J Palliative Care 3:129-37, 2000.

Shapiro MF, Morton SC, McCaffrey DF, et al. Variations in the care of HIV-infected adults in the United States: Results for the HIV Cost and Services Utilization Study. JAMA 281:2305–15, 1999.

Wagner EH. Chronic disease management: What will it take to improve care for chronic illness? Effective Clinical Practice 1:2-4, 1998.

Weingarten S, Henning J, Badamgarav E et al. Interventions used in disease management programmes for patients with chronic illness-which ones work? Meta-analysis of published reports. BMJ 2002;325:925-942.