AIDS TREATMENT NEWS Issue #204, August 5, 1994
Tadd Tobias and John S. James
Note: Recently San Francisco General Hospital was rated best in the U.S. for AIDS care, for the fifth year in a row, in a poll of medical professionals conducted by U.S. News and World Report, (published in the July 18, 1994, issue).
ATN: You work with both inpatients and outpatients who live with HIV disease. Can you tell us about the GI Services at San Francisco General Hospital and the Bay Area Nutrition Clinic.
KW: When I became the Clinical Research Coordinator here at SFGH, the physicians here were doing a lot of procedures for patients with dysphasia, diarrhea and other GI-related symptoms. We did an in-patient chart audit and found approximately 70% of patients had a diet inappropriate for the symptoms they were experiencing. In addition, nutrition was often at the bottom of the list when it came to providing care.
We formed a multi-disciplinary team under the auspices of the Division of Gastroenterology, Hepatology, and Clinical Nutrition. The team consists of a GI specialist, pharmacologist, dietitian, and nurse, who work one-on-one with hospitalized patients, to address the specific problems interfering with optimal nutrient intake. But when patients were discharged home, there would be no outpatient followup. It was difficult to have much of an impact in the short time that people were hospitalized; we wanted to expand our work to reach outpatients earlier. That's why we started BANC, which also is a multidisciplinary approach to assessing and addressing the nutritional concerns of people with HIV. In this outpatient clinic, we help to keep people from losing more weight, or help to keep people nutritionally sound and prevent the onset of weight loss. Patients are active participants in their own care at BANC.
It's important to reach people early. It is well-documented that during World War II children who were malnourished developed pneumocystis. If you are malnourished, the immune system suffers. If you are sick, your nutritional needs go up overall. Currently 50-60% of all hospital patients are malnourished. Malnutrition leads to increased length of hospitalization due to repeated complications requiring treatment. If almost all HIV-infected people eventually develop malnutrition, one might speculate that malnutrition is a cofactor in increasing health-care costs.
ATN: How do you know if people are malnourished? It's subtler than our typical image of an emaciated individual.
KW: That's a very good point. One person was admitted to the hospital with cryptococcal meningitis. He looked pretty well buffed -- not like he had missed many meals. But when we looked at his serum albumin and his body composition, he was already mildly malnourished.
Many physicians won't address nutrition because, "You look fine -- your weight is stable." But what you can't see from the outside is that there may be changes already occurring with loss of muscle mass; it is being replaced with fat. You may maintain your overall weight, while inside there are changes leading you down the path to malnutrition. In our chart review we found that 34% of patients were already severely malnourished when they were hospitalized with their first AIDS-defining illness, and another 46% were moderately malnourished. It is clear that changes in nutritional status occur during the relatively quiet phase of "just" being HIV- positive.
ATN: How can we explain body composition to our readers, and how can people keep an eye on that? Is an expensive test needed, or are there simple ways?
KW: Body composition will tell us what lean/fat ratio you have. This reflects your muscle mass and fat pads. Men will have fewer fat pads than women.
In simple starvation the body will start breaking down the fat as a source of energy, and then eventually go to the muscle. With AIDS we're seeing the opposite: The body breaks down the muscle and leaves the fat intact until later. So there are metabolic derangements going on that we don't understand well. Eventually in some people, no matter what you do, unless you're on TPN [explained below], the body won't be able to utilize the protein, carbohydrate and fat you're giving it, to put into muscle and fat.
ATN: How do health care providers keep an eye on lean body mass?
KW: One simple way is to use a small caliper and test 12 different sites on the body--pulling the skin and fat away from the muscle and pinching, and adding all the numbers. Then you look on a chart for age, sex, height, weight, etc., to estimate the percent of body fat for the individual. We use that plus something we call the Futrex, a machine that bounces infrared light off the arm and computes the percent of fat, lean muscle, and water the individual has.
ATN: Can you explain more about the nutritional assessment? KW: There are many things to consider. We look at serum albumin -- your protein level. It has many important functions in your body, but the problem of albumin is affected by all kinds of things and may not be accurate. Also, the albumin level measures your nutritional status from three weeks ago. More sensitive indicators include pre- albumin (which indicates nutritional status about three days ago), and transferin, another protein, which is very sensitive; it indicates where you were hours ago with your nutritional status. We also look at triglycerides, cholesterol and zinc. Other information that helps us determine the level of malnutrition is the amount of weight lost over a period of time, and the person's percentage of usual body weight.
Getting Help Early
ATN: You've said that early, aggressive nutritional intervention can prevent weight loss, increase the function of the gut, reduce the chance for opportunistic infections, enhance response to therapies and improve a person's quality of life and sense of well-being. Can you define "early, aggressive nutritional intervention" a little more?
KW: When somebody is first diagnosed as being HIV-positive, they should sit down with a registered dietitian or someone in the nutrition field and ask, where am I now? They should align themselves with a physician and tell the doctor, I want to maintain my weight, I want to keep an eye on this. Then, as soon as they start losing weight, even if there are no other symptoms or obvious causes, go to the doctor or dietitian and ask, "Where am I with my body composition and what do I do now?"
Through each change that goes on the person needs to be in touch with a physician or someone who's going to be able to give them some direction. The earlier we can get that weight back up and keep an eye on body composition, the better off we will be in prolonging nutritional status and quality of life.
ATN: What can we say to people at an earlier stage now?
KW: Align themselves with a registered dietitian, not a nutritionist. A nutritionist is someone who may have gone to school or read books, but has never taken a test to confirm their knowledge. A registered dietitian has had four years of college, and many of them will go an extra year of training, and there is a standard test they have to pass, so you know their knowledge base is probably stronger. Their experience and exposure to different types of patients is much more structured and solid than the nutritionists. The nutritionist may be good, but to get the total picture you should choose a registered dietitian who is familiar with HIV disease or who has worked with oncology patients, because there are many similarities in certain aspects of the nutritional component.
People who are still feeling good when they find out they are HIV-positive should talk with a registered dietitian and ask, where am I now? How is my body composition -- what percent fat? Am I overweight or underweight? Dietitians can help with eating more healthy foods. It is recommended that people come back occasionally, perhaps every three months, to check on how things are going.
As soon as someone starts to lose weight, they should see the doctor or the dietitian. There may be other things going on at that point, or perhaps they may need to add a liquid supplement. As with any health care provider, find a dietitian you can communicate well with, whom you feel comfortable with.
ATN: How does one find a registered dietitian?
KW: If you don't have a referral, the American Dietetic Association has a list; or you can look in the yellow pages for a registered dietitian.
ATN: Will insurance pay?
KW: At this point it's probably an out-of-pocket expense, unless a physician is also seeing the person in the same clinic. There is legislation underway now, though, to put registered dietitians in the category of being licensed practitioners, to facilitate payment by insurance.
ATN: What about people who can't afford a dietitian?
KW: It's a difficult situation. However, if somebody is hospitalized for some reason, they can ask for a nutrition consult and assessment from a registered dietitian or nutritional team, and have that during their hospitalization.
Nutritional Status in HIV Disease
ATN: HIV related complications often occur in the lower gastrointestinal tract. Can you explain why this is the case?
KW: Immune globulins in the gut -- a kind of antibody called IgA -- normally act at the mucosal layer to protect against invading organisms. When somebody is immunocompromised, the body doesn't produce enough of the antibodies to be protective. This creates open portals of entry in the gut for bacteria, funguses and viruses. Critical care patients get septic because they are not using their gut and they are malnourished; these problems allow the translocation of bacteria, etc., into a person's system. That's why we want to keep the gut functioning as long as possible -- stimulate it and keep those immune globulins and macrophages working, so there isn't the opportunity for pathogens to enter.
ATN: What can be said about nutritional status as an indicator for survival?
KW: Kotler's research found that when a person is at 66% of their ideal body weight and 54% of their body cell mass, they die.
People maintain a certain weight, then develop an opportunistic infection and drop their weight. They may gain weight back, but not quite up to what it was before. Another opportunistic infection will continue the downward spiral.
That's why it is important to keep nutrition under control, especially while you are in the hospital. This is one disease where everybody has to be their own advocate; go to the doctor and ask about this drug or that trial, pushing, pushing, pushing. Most doctors consider weight loss and malnutrition inevitable. That's one of the most frustrating things for us -- getting the doctors to buy into the fact that there is a lot we can do.
ATN: Please explain how to meet the specialized nutritional needs of persons with mildly to severely symptomatic HIV disease.
KW: There are nutritional formulas specifically designed for altered-gut problems. For supplementation people can use nutritional formulas which you can get over-the-counter at pharmacies; they come in cans and are taken orally. More severe clinical situations may require peripheral parenteral nutrition (PPN), or total parenteral nutrition (TPN). These are formulated for individual patients and administered intravenously into the arm (PPN), or with a catheter in the chest (TPN).
ATN: Give us some examples of when intravenous feeding is appropriate.
KW: PPN is for short-term use because it will irritate the veins fairly quickly; 7-10 days is usually the maximum. We used it on a patient with CMV esophagitis so bad he couldn't swallow his own saliva. It was used as a "bridge" until the CMV treatment could kick in and the patient could swallow again. Then we worked him into an appropriate diet. In a different instance we used TPN for a patient who couldn't eat because of an obstructing lymphoma of the stomach. We put him on TPN for two weeks while he was getting chemotherapy and radiation. The tumor melted, and then we could feed him normally.
In another case, there was relentless, severe cryptosporidium diarrhea -- 20 liters of stool per day. The patient would die in days if we didn't do something to put the gut at rest. In the first couple of weeks we used TPN to give the gut a rest. Then we reintroduced food in the form of pure amino acids; the product was Vivonex, a chemically-defined liquid diet very low in fat, to stimulate the gut and some digestive enzymes. Basically, the body doesn't have to do any work, the nutrients just get absorbed across the gut mucosa. It's an easy, sort of passive way to get food into someone.
One thing to consider is that people on TPN tend to gain fat weight, while on tube feeding (see below) they tend to gain more lean weight -- we think this is because it's more physiologic to have food going directly into the gut.
In the case of TPN, it is important to discuss the rationale for it, as well as end-points for its use, before it is started. We have seen TPN help people "over the hump" and improve their nutritional status. However, its drawbacks include the possibility of infection, metabolic and technical problems, and great expense.
ATN: Where can one get more information to help make these decisions?
KW: The American Society for Parenteral and Enteral Nutrition (ASPEN) is a multidisciplinary society of physicians, pharmacists, nurses, and dietitians, who are specifically interested in nutrition. They put out guidelines about when TPN should be used, when it would be helpful, when it's not a good idea.
What Is Tube Feeding?
Tube feeding is a less expensive and more "normal" method of feeding someone than PPN or TPN, because you use the gastrointestinal tract. Tube feeding would be appropriate for someone with a normal stomach and gut function, but who had either dysphagia (difficulty in swallowing) or odynophagia (pain on swallowing). The feeding could be given continuously, or just at night to allow freedom to move about during the day.
There is a wide range of formulas and ingredients for tube feeding, for example: (1) intact protein and high fat and carbohydrate; (2) various other forms of protein such as peptides or pure amino acids for compromised gut function; (3) medium chain triglycerides, a form of fat that is easily absorbed; (4) fiber; (5) fish oils, etc. The registered dietitian, working with the physician, can make the best recommendation for each individual.
[Part II of this interview will look at liquid nutritional supplements, oral rehydration salts, vitamins, and other topics.]
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