PROVIDING HIV/AIDS CARE IN A CHANGING ENVIRONMENT — AUGUST 2004
Nutritional status is strongly predictive of survival and functional status among people living with HIV/AIDS (PLWH/A). Nutritional problems may occur at any stage of disease and can contribute to impaired immune response, accelerate disease progression, increase the frequency and severity of opportunistic infections, and impede the effectiveness of medications. Fortunately, many nutritional disturbances are preventable and manageable.
Nutritional interventions—including nutrition assessments, counseling, therapy, and access to food—can have a positive impact on morbidity, mortality, and quality of life. Nutritional interventions can also decrease or delay hospitalizations, emergency room visits, and costly and invasive treatments. The primary care setting offers an important opportunity to help prevent and mitigate nutrition-related complications. Yet, nutritional services are not always integrated into the primary care framework. Care teams sometimes do not include anyone with expertise in nutrition; even if clients have access to a registered dietitian, he or she may not have expertise in HIV/AIDS. As a result, nutritional problems—many of them much more easily prevented than treated—often go undiagnosed and untreated.
Now more than ever, the management of HIV disease necessitates substantial expertise in nutrition. Ideally, all PLWH/A should have access to the services of a registered dietitian with expertise in HIV/AIDS who can provide nutrition assessments, counseling, and education and help determine whether the client has adequate access to food.1 Most experts recommend that all HIV/AIDS care providers have a registered dietitian in some capacity—whether full time, part time, or in consultation.2 For many providers, finding an experienced nutrition professional can be challenging due to budget restraints or because of a lack of available dietitians. Fortunately, many tools and guidelines have been developed to assist the entire clinical care team in integrating nutritional counseling and treatment into primary care (see box, page 4).
Preventing, diagnosing, and treating nutritional disturbances requires providers to navigate a complex and cyclical web of cause and effect. The systems that regulate nutrient intake and absorption are affected by—and, in turn, affect—HIV disease itself, opportunistic infections associated with the disease, and the effects of drugs used to fight HIV and HIV-induced illnesses.2 Inadequate nutrition makes it hard for PLWH/A to preserve their already weakened immune systems, increasing the risk of opportunistic infections and reducing the effectiveness of treatment. Infections can further compromise nutritional status and the strength of the immune system.3,4,5 Finally, HIV medications involve numerous food–drug interactions, so successful treatment adherence requires specific timing of medication doses and complicated dietary regimens.6
The medical and physiological sources of nutritional problems associated with HIV/AIDS may be grouped into three general categories: inadequate intake, poor absorption, and altered metabolism.
Many factors affect whether clients can ingest enough calories and nutrients to maintain health. Reduced nutrient intake can lead to weight loss as well as vitamin and mineral deficiencies.1 It generally results from loss of appetite caused by nausea, vomiting, altered sense of taste, fatigue, or opportunistic infections in the gastrointestinal (GI) tract.
Malabsorption is a common manifestation of HIV infection and may be secondary to lactose intolerance or GI infections.2 Even early on, HIV disease can directly damage the GI tract and interfere with nutrient absorption, resulting in depleted levels of certain vitamins and minerals, particularly carotenoids, B vitamins, vitamin C, selenium, and zinc. As HIV disease progresses, opportunistic infections, including intestinal parasites and candidiasis, can further impair intestinal absorption. Intestinal malabsorption may be compounded by medication side effects.7
Metabolic abnormalities alter the way the body uses, stores, and excretes nutrients and may result in an increased need for calories and protein. Metabolic problems include glucose dysregulation and lipid abnormalities and may stem from immune dysfunction, medication side effects, opportunistic infections, hormonal alterations, or the direct effects of HIV itself.5
The extraordinary success of antiretroviral therapy has reduced the frequency of some HIV-related nutritional disturbances in the developed world. Paradoxically, however, new nutrition-related problems have emerged in the past few years. In some cases, the problems are complications of medical progress—either the direct result of treatment advances or simply a function of prolonged survival.8 Among the most important nutritional disturbances are AIDS wasting syndrome and lipodystrophy.
Defined as involuntary weight loss of more than 10 percent along with either chronic diarrhea or weakness and fever, AIDS wasting syndrome (AWS) became an AIDS-defining condition in 1987.9 AWS incidence fell dramatically after the introduction of highly active antiretroviral therapy (HAART)—from 30.2 cases per 1,000 person-years in the first half of 1992 to 11.9 cases per 1,000 person-years in the first half of 1999, in one study.10 Weight loss and muscle wasting, however, remain a significant nutritional concern for people with HIV/AIDS even in populations with widespread access to treatment.11,12,13
Patients with AWS have a decreased survival rate independent of other risk factors.13 One study, for example, found that a 10 percent loss of body weight was associated with a fourfold to sixfold increase in mortality compared with maintaining or gaining weight.14 Rapid but lesser degrees of weight loss, such as weight loss of 5 percent within 6 months (which is not included in the technical definition of AWS) has been associated with increased morbidity and mortality.11,13
Unlike starvation-induced weight loss, HIV-associated wasting results in loss primarily of lean body mass. Such depletion increases the likelihood of opportunistic infections and is an independent predictor of increased morbidity and mortality, even if total body weight is maintained.12
Today, people who are on antiretroviral therapy and who develop AWS may not exhibit the symptoms characteristic of the pre-HAART era. Monitoring of weight and physical appearance may be insufficient metrics for assessing the development of AWS, especially in people with lipodystrophy which may camouflage lean body mass depletion. As a result, clinicians may fail to notice signs of AWS, especially among PLWH/A who achieve significant viral suppression and immunologic enhancement.13 Therefore, routine monitoring of changes in weight, body mass, and body composition is essential.
The incidence of lipodystrophy syndrome (LDS), or fat redistribution syndrome, has increased in the era of HAART. LDS includes a constellation of harmful metabolic and body composition alterations, yet it has no precise definition. Estimates of LDS prevalence vary widely, from 15 to 84 percent, depending on the population studied and the definition used.15
LDS is characterized by two types of changes in body fat distribution, which may occur alone or in combination. The first type involves the loss of fat, or lipoatrophy, in certain areas, particularly in the cheeks, temples, buttocks, arms, and legs. The second type involves isolated fat deposits, most commonly at the back of the neck and shoulders and around the abdomen. Breast size may also increase. Abdominal fat deposits are more common in women than in men, whereas depletion is more common in men.16 These changes to body shape can interfere with daily activities, such as exercising, sleeping, and even breathing.17
LDS has been associated with increased risk for poor circulation, heart attack, and stroke.15,16 In addition to high blood pressure, some people may develop dyslipidemia—abnormal blood lipid (cholesterol or triglyceride) levels16—which is associated with increased risk for cardiovascular problems.18 People with LDS may also experience alterations in glucose and insulin levels, which can lead to diabetes if left untreated.17
Although many people with HIV/AIDS and lipodystrophy remain relatively healthy, the noticeable body changes caused by the condition can contribute to poor body image, low self-esteem, social withdrawal, and depression.19 Ultimately, the fear of stigma may cause some people to discontinue therapy associated with LDS.
The cause of LDS has never been firmly established, but many researchers believe it is related to HAART because the syndrome was identified only after HAART use became widespread. Initially, protease inhibitors were implicated in the development of LDS, but further research has shown that LDS can occur in the presence of HAART regimens that do not include a protease inhibitor.16 The etiology of LDS may, in fact, be multifactoral. Some scientists believe that the inflammatory response to HIV may exacerbate LDS.15 In addition, older age, female gender, hepatitis C co-infection, severity and duration of HIV disease, degree of prior immune suppression, and extent of immune system recovery all are associated with LDS development.15
Nutrition alterations can occur early in HIV infection, so nutrition intervention should begin soon after diagnosis. Nutrition screening and a complete baseline nutrition assessment should be part of every care plan, as should ongoing reassessment. The three key components of nutritional care are as follows:
Screening for nutritional status is a critical part of early intervention to identify and treat nutrition problems. At a minimum, nutritional screening should include patient history, basic body measurements, and laboratory tests.20 Ideally, nutrition screening is administered by a registered dietitian with experience in HIV/AIDS; however, all HIV/AIDS providers should be able to identify nutrition-related problems and know when and how to refer clients for further evaluation and treatment. Various tools are available to guide providers in assessing risk in their HIV-positive clients.
Following the screening, HIV-positive clients at risk for nutritional problems should be referred to a registered dietitian for a comprehensive nutrition assessment. According to the Guidelines for Implementing HIV/AIDS Medical Nutrition Therapy, published by the American Dietetic Association (ADA) and the Los Angeles County Commission on HIV Health Services,21 the timeline for referral is as follows:
Referrals to a registered dietitian should be automatic when one or more “red flag” risk factors are identified during the screening, as outlined in the ADA document Nutrition Referral Criteria for Adults with HIV/AIDS.22 Red flags include weight changes, oral and GI symptoms, metabolic complications, barriers to nutrition, impaired functional status, behavioral concerns, and unusual eating behaviors.23
If risk factors or indicators are identified during screening, comprehensive baseline and follow-up nutrition assessments should be conducted by a registered dietitian knowledgeable and experienced in HIV nutrition issues.1 The assessment includes a complete psychosocial assessment and evaluation of current nutritional status, including baseline weight and body mass measures, eating patterns, and average daily caloric intake; changes in status; and goals of therapy.21 An individualized nutrition care plan is then developed to address the problems identified and establish a strategy for prioritizing, monitoring, and adjusting nutrition interventions.
The ADA and various AIDS organizations have developed guidelines for conducting complete nutritional assessments (see box at right). The ADA calls for a baseline assessment soon after an HIV diagnosis, with follow-up assessments once or twice per year for asymptomatic patients and 2 to 6 times per year for patients experiencing symptoms or with an AIDS diagnosis.
Although involuntary weight loss remains a critical metric for evaluating nutritional status, other nutritional parameters are more accurate indicators of nutritional problems than body weight.6 When developing appropriate nutritional management strategies in this era of HAART, it is critical to assess a variety of metrics, including changes in body composition of fat and lean body mass.20 The key components of a comprehensive nutritional assessment can be remembered with the mnemonic ABCD, which stands for anthropometric, biochemical, clinical, and dietary parameters, as described below.
Nutritional evaluations should include an assessment of physical appearance and functional status and should involve anthropometric (body composition) measurements, including height, weight (current and past), and hip and waist circumference.20,24 One common tool for measuring body composition is bioelectric impedance analysis, a simple, painless, and accurate procedure in which a handheld device sends a small electrical current through the body and measures the ease with which it travels. Other techniques, including dual X-ray absorptiometry, cross-sectional computed tomography, and magnetic resonance imaging, are available insome settings.20
Biochemical measures focus on blood chemistry, including levels of hemoglobin, glucose, albumin, prealbumin, liver enzymes, iron, lipids, insulin, vitamins, trace elements, free testosterone, and renal function.
The clinical component of nutritional evaluation includes assessment of altered nutritional requirements and psychosocial and financial factors that may impede adequate intake. Key factors include current medications, current medical status, use of alternative therapies, opportunistic infections and comorbid conditions, occurrence of diarrhea, symptoms of GI distress or malabsorption, and functional status.
Dietary intake assessment examines the client’s eating patterns and evaluates the factors influencing his or her ability to achieve an adequate diet, such as nausea, infection, food intolerances, or altered taste and smell. Important components of the diet history include evaluation of usual intake, current intake, and any perceived changes; ethnic and cultural food preferences and practices; food intolerances; and use of macronutrient and micronutrient supplements. Various tools are available to assist in dietary assessments, including the Quick Nutrition Guide, the Food Intake Record, and the Nutrition Assessment Tool.
In addition to medical and physiological factors, the following issues may contribute to poor nutrition status:5
If initiated soon after diagnosis of HIV or AIDS, medical nutrition therapy may help prevent malnutrition, lipodystrophy, and the loss of lean body mass. All HIV-positive clients should receive basic education regarding nutritional issues. Regular resistance exercises have also been shown to restore lean body mass and strength in PLWH/A. Registered dietitians should provide self-care education and appropriate referrals to other medical professionals, including physicians, social workers, mental health providers, and case managers, and to community resources such as food pantries, food stamps, nutrition classes, and other education and economic resource groups.20
In addition to nutrition education and counseling and referrals, various drug-based therapies can maintain or increase body weight in patients who experience wasting. Other agents have been used to treat the symptoms of the metabolic complications associated with HAART, including antilipemic medications, such as statins and fibrates, and antiglycemic medications, such as metformin. Treating painful or uncomfortable symptoms with medications such as antidiarrheals, antiemetics, and analgesics can also help improve nutritional status.1 In addition, by helping clients adhere to appropriate food and medication schedules, providers can enhance the efficacy of medications and reduce the risk of drug resistance.
Early treatment of HIV-associated wasting restores lean body mass, improves quality of life, reduces the frequency of opportunistic infections, and limits hospitalizations. Immediate goals include controlling viral load, correcting any immediate causes of wasting—including psychosocial factors—and improving nutritional intake. It is critical to increase dietary intake to reverse the loss of weight and lean muscle mass.
Unfortunately, no generally accepted nutritional guidelines exist for people with AWS, and the appropriate treatment may vary considerably from person to person.11 Moreover, the effects of AWS are not simply reversed by increasing the intake of calories and may require the use of agents to increase lean body mass.13 Research suggests that nutritional counseling and support, appetite stimulants, progressive resistance training, and anabolic hormones can reverse weight loss and increase lean body mass in HIV-infected patients.11 Clients’ response to AWS treatment and counseling should be initially evaluated at 2 weeks and then at 4-week intervals.22
Several treatment approaches are available for LDS. Changing the treatment regimen is an option for some patients, depending on medication side effects and viral resistance patterns, and has been shown to improve lipid levels and insulin function.15 Health behavior changes, including improved diet, increased exercise, and weight reduction, can be helpful.25 Smoking cessation and decreased alcohol intake also are important.18 Anticholesterol medications, primarily statins and fibrates, are used to regulate lipids, although they sometimes interact with protease inhibitors.15 Providers should consult the National Cholesterol Education Program guidelines of the National Institutes of Health in deciding when to recommend dietary changes and exercise and when to prescribe medications.26
Metformin, commonly used to treat non-insulin-dependent (type II) diabetes, can improve insulin function and reduce risk factors for heart disease.16 Cosmetic surgeries, such as facial augmentation and liposuction, can enhance appearance.15 Finally, some of the same therapies used to treat wasting—aerobic exercise, resistance training, and growth hormones—are beneficial for people with LDS.
Nutrition counseling by a registered dietitian has been shown to improve health outcomes in HIV infection and facilitate access to adequate dietary intake. Nutrition interventions face many potential barriers to effectiveness, so a good relationship between the registered dietitian and client is important to developing nutrition goals and creating a nutrition care plan that supports those goals. The nutrition care plan should work in harmony with the client’s physical, mental, spiritual, and emotional health goals. Care providers should work with their clients to develop creative ways to overcome barriers related to cultural identity, linguistic preference, lack of trust, cognitive dysfunction, or limited literacy skills. Many clients, desperate for treatment, fall prey to unproven diets or over-the-counter herbal or other remedies that could interfere with their nutrient absorption or medication effectiveness. Patients must be aware of the potential impact of alternative therapies on the effectiveness of their treatment.6
“Poor nutrition has the greatest impact on client health, but it is the cheapest to fix,” says Susan Kopins, RD, LN, nutritionist with Moveable Feast, a Ryan White Comprehensive AIDSResources Emergency (CARE) Act Title I- and Title II-funded organization providing food and nutritional counseling to more than 700 people living with HIV/AIDS in Baltimore City and 13 Maryland counties. Like most HIV/AIDS services, nutritional counseling cannot be offered in a vacuum and may require referral to other services, including dental care.
For each client who is added to Moveable Feast’s caseload, Kopins begins with a client assessment. She first asks about the client’s medical history besides HIV—is the client diabetic? Does he or she have hepatitis C or kidney disease? What about substance abuse issues? Her assessment then addresses the client’s medication regimen and adherence issues. Next, she asks the client about changes in weight. Kopins says the most important part of her nutritional assessment involves examining the client’s eating patterns to see how they could be affecting the client’s weight, medication adherence, and health. She pays particular attention to how many meals per day the client eats, whether he or she “fills up” easily, and how many calories per day are consumed.
One of the greatest challenges for providers is finding the time and expertise needed to identify and monitor all the problems and struggles that clients encounter in adopting—and maintaining—a healthy lifestyle. According to Kopins, clients may be uncomfortable or untrusting of health care professionals and be hesitant to ask questions. And, like so many people, they may have difficulty with exercising the discipline one needs when trying to stick to a prescribed diet. Maintaining good health, particularly if it involves significant lifestyle changes, can become wearisome, and adherence may wane in the absence of ongoing support and intervention.27 All clients should therefore be monitored regularly, and the nutrition care plan should be revisited and modified as the client’s needs and goals evolve. Nutrition interventions should address challenges associated with new, complex antiretroviral regimens, which involve many pills; have complicated dosing schedules; and may cause symptoms that negatively affect food intake, absorption, and nutrition status. Registered dietitians play a critical role in developing practical medication schedules individualized to each client’s medications, daily activities, food preferences, symptoms, and economic considerations.21
Although counseling sessions at Moveable Feast are tailored to each client’s individual needs, common threads exist. Most clients need basic information not just on nutrition but also on food handling, for which Kopins provides guidelines both verbally and with handouts. People with AIDS need to be careful about everything from eating leftovers to ensuring that their drinking water supply is safe. They also need to know how to prepare food safely—how to keep raw meat from contaminating foods that will not be cooked and how to make sure that foods are cooked to the appropriate temperature.
Kopins emphasizes that no one approach will work for all clients. Because clients may assume that providers will be insensitive to their needs or lifestyle, Kopins works to “get the client to take control over the situation.” She “tries hard not to tell the client what to do”—instead she reinforces clients’ good habits and provides guidelines for areas where they need to make changes. Clients who have particular conditions, such as diabetes, kidney disease, and LDS, receive counseling specific to their nutritional needs. Kopins also encourages clients to get regular exercise, even if it is only a walk around the block. Exercise builds lean body mass, stimulates appetite, and helps maintain bone density.
Small changes can make a big difference. For example, Kopins says, it comes as a surprise to many clients that “there is no rule that says you have to have breakfast food for breakfast.” Reheating dinner from the night before is fine. Clients who are low in energy or do not eat much at a single sitting can prepare casseroles that they can freeze and heat up as needed. Kopins generally encourages clients to eat five or six small meals per day.
Although Moveable Feast provides weekly delivery of a bag of groceries and five frozen entrees for clients who are unable to return to work and cannot shop for themselves, clients do not always eat everything delivered to them. Some clients frequently eat cheap fast food from the corner carryout, unaware that their nutritional needs are not being met. Rather than tell them not to eat there, Kopins encourages clients to make better choices, such as choosing grilled, not fried, foods. By offering information, ideas, and guidelines, rather than a set of “rules,” Kopins helps her clients retain some sense of control over their food choices, their health, and their lives.
Kopins follows up with clients 3 months after initial intake and at roughly 3-month intervals after that. A few clients—those who have the most difficulty achieving the right caloric intake—need more frequent follow-up. She measures outcomes in terms of client weight gain and CD4 count. As clients’ nutritional status improves, their health status and immune function generally improve. Many clients do not have complete control of their HIV disease, but they are able to achieve control over a small portion of their life—food. For Kopins’ clients, that accomplishment itself is success.
Since the advent of HAART, the rate of death from AIDS has declined significantly, and the life expectancy of PLWH/A continues to rise. Providers now have a window of opportunity to address nutrition-related problems. Nutrition interventions can increase quality of life, assist in symptom management, support medication therapy, and improve resistance to infections and complications. It is vital that all providers understand the need for basic nutrition assessment and intervention and the role of nutrition in client health status.
Health Care and HIV: Nutritional Guide for Providers and Clients is a 265-page guide that provides practical patient handouts and tools to help providers and grantees conduct nutrition screening, assessment, and treatment. The manual is available at www.aidsetc.org/aidsetc?page=et-30-20-01 (English) and www.aidsetc.org/aidsetc?page=et-30-20-01-sp (Spanish).
HIV/AIDS Medical Nutrition Therapy Protocol—Adults: Originally developed and reviewed by members of HIV/AIDS and Pediatric Dietetic Practice Groups and the American Dietetic Association, the protocol was published in 1996 and revised in 1998. A protocol for treating children is also available. (See ADA, Medical Nutrition Therapy Across the Continuum of Care; 1998. Available at: www.aids-etc.org aidsetc?page=et-30-20-01)
Hayes C (ed.) Integrating Nutrition Therapy Into Medical Management of Human Immunodeficiency Virus. Clin Infect Dis 2003;36 (Suppl 2): S51-S109. The supplement represents the work of more than 50 experts working with multiple Federal agencies, including HRSA. Available at: www.journals.uchicago.edu/ CIDjournal/contents/v36nS2.html.
Association of Nutrition Services Agencies. Nutrition Guidelines for Agencies Providing Food to People Living With HIV Disease, 2nd ed. Available at: www.aidsnutrition.org.
Los Angeles County Commission on HIV Health Services. Guidelines for Implementing HIV/AIDS Medical Nutrition Therapy Protocols. 1999. Available at: www.numedx.com/readstory.phtml?story=v2n3feature.
Position of the American Dietetic Association and Dietitians of Canada: Nutrition Intervention in the Care of Persons With Human Immunodeficiency Virus. In: J Am Diet Assoc. 2000;100:708-717. Available at: www.eatright.org/Public/ GovernmentAffairs/92_adap0600.cfm.
The AIDS Project Los Angeles has compiled a list of HIV-related nutrition resources and links, available at: www.apla.org/apla/nutrition/nutlinks.html.
PLWH/A should be provided with educational information and guidance on thefollowing issues:
Source: Adapted from Nerad J, Romeyn M, Silverman E, et al. General nutrition management in patients infected with human immunodeficiency virus. Clin Infect Dis. 2003;36(Suppl 2):S52-S62.
Publisher
U.S. Department of Health and
Human Services
Health Resources and Services
Administration
HIV/AIDS Bureau
Editor
Richard Seaton
Impact Marketing and
Communications
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