The purpose of this article is to provide a national perspective on oral health and HIV. As Bozzette and colleagues³ have written, the generalizability of available research is limited because of such factors as location and convenience sampling. Determining how best to respond to the oral health needs of those with HIV infection in the United States and to provide a context for interpreting local or convenience sample studies requires national data that are representative of those living with HIV. The only nationally representative study of HIV-infected people receiving medical care is the HIV Cost and Services Utilization Study (HCSUS) research project funded by a cooperative agreement between the Agency for Healthcare Research and Quality (AHRQ) and RAND Corp., a private nonprofit research institution in Santa Monica, Calif.⁴ This article presents descriptive findings from that study.

	METHODS

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The HCSUS cohort is a nationally representative probability sample of HIV-infected adults receiving medical care in the contiguous United States. The reference population was limited to people at least 18 years old with known HIV infection who made at least one visit for regular or ongoing care to a nonmilitary, nonprison medical provider other than one located in an emergency department from Jan. 5 through Feb. 29, 1996. The HCSUS used a multistage design in which geographical areas, medical providers and patients were sampled. The National Opinion Research Center (NORC) approached anonymously selected subjects for interview only after providers or their agents obtained permission for the interviewers to do so. The institutional review boards of RAND Corp. and the University of California, Los Angeles, reviewed all consent forms and informational materials. Full details of the design are available elsewhere.^5,6

Centrally trained NORC personnel conducted a baseline interview⁶ and three follow-up interviews. All interviews were conducted using computer-assisted personal interviewing instruments designed for this study. Interviews were conducted in Spanish when required. The baseline interviews were 120 minutes in duration, including time to obtain informed consent and contact information. Ninety-one percent of the initial interviews were conducted in person and the remaining over the telephone. NORC conducted three follow-up interviews in the 36 months after the initial interview. At each interview, we constructed an analytical weight for each respondent to adjust the sample so that we could estimate the number of people represented by that respondent.^5,6

We incorporated the detailed oral health questions into the first follow-up interview administered to 2,466 subjects between December 1996 and July 1997 (median date March 1997).⁸ This sample represents a population of 219,700 HIV-positive people in medical care in the contiguous United States during this period. Not included in the HCSUS sample were those with HIV who did not know they had the virus and those who knew they were HIV-positive but sought care irregularly or not at all.

We calculated descriptive statistics using STATA Version 6.0 (StataCorp, College Station, Texas). Population estimates have been rounded to the nearest 100. We have organized the oral health results under the following categories: oral health/symptoms, quality of life, dental care utilization and payment for care, oral treatment in the 12 months preceding the interview, attitudes and beliefs regarding oral health and dental care, and oral health practices.

	RESULTS

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HCSUS population at first follow-up. Table 1 shows the main characteristics of the HCSUS population at the first follow-up. The characteristics of the HCSUS population at baseline have been described in detail elsewhere.^3,9 A slight majority of subjects (55 percent) were between 35 and 49 years of age, and only 11 percent were aged 50 years or older. More than three-quarters (77 percent) were male. The largest racial/ethnic group was white (49 percent), followed by African-American (33 percent) and Hispanic (15 percent). Twenty percent had no medical insurance. One-quarter had an educational level lower than high-school graduate, and 19 percent had completed four or more years of college. The CD4 lymphocyte count was less than .05 x 10⁹ liters for 46,200 patients (21 percent). The largest percentage (36 percent) lived in the South and the smallest percentage (11 percent) lived in the Midwest. Forty percent were receiving HAART. The majority (60 percent) was unemployed.

Subjects assessed their symptomatology for the period since the baseline interview. The median time since the baseline interview was in the seven-to-eight-month range. The most commonly reported symptom was xerostomia; 37 percent (80,300) reported having had this symptom at some time. Almost one-quarter (53,400) had had pain at some time in their mouth, tongue, teeth or gingivae. Twenty percent (44,900) had had white patches in their mouth since their initial interview. Symptoms involving the tongue were less frequent (8 percent).

Quality of life. Quality-of-life questions dealt with the four-week period before the interview (Table 3, page 1400). During this period, less than 10 percent had oral problems that interfered all or most of the time with social activities, limited the kind or amount of food eaten, or limited the ability to swallow. There were worries, however, about oral problems and appearance. Fifteen percent (32,200) worried all or most of the time about oral problems, and 23 percent (49,700) were happy with their oral appearance little or none of the time.

More than 60 percent of those with HIV (135,700) had had a dental visit in the preceding 12 months. Thirteen percent (28,000) had not had a dental visit in two to five years and 9 percent (20,100) had not had a visit in more than five years. For those having at least one visit within the preceding 12 months, most had had only one or two visits. Nineteen percent (26,300) had had five or more visits. Twenty-five percent (54,400) reported having needed dental care since the baseline interview but not having received it. More than one-half of those who had received care in the past year had no out-of-pocket expense for care, and another 20 percent spent no more than $100.

Oral treatment in past 12 months. Diagnostic and preventive care were the most frequently reported services, with 77 percent (104,200) of patients who had visited a dentist in the preceding 12 months having had a prophylaxis (Table 5, page 1402). Almost 30 percent (39,100) had had an extraction, and 33 percent of patients (45,000) had received a prescription of some type. The reason for the most recent visit of almost one-third of dental patients in the study was that "something was wrong."

While questions related to a person’s dentist were asked only of those who had received dental care in the previous year, all study subjects were asked about dentists in general. Fifty-six percent (120,200) thought that dentists in general were knowledgeable about treating HIV-related oral disease. Twenty-seven percent (57,700) thought that dentists in general could not be trusted to protect the privacy of patients, and 43 percent (93,100) were not sure. Forty-six percent (99,500) disagreed with the statement that most people with HIV could afford dental care; 39 percent (85,000) were not sure. About one-half agreed that those with HIV who wanted a dental appointment could get one when they wanted it, and about one-quarter (55,500) disagreed.

Oral health practices. More than 60 percent of those with HIV (134,300) did not change the frequency of brushing and flossing after learning that they had HIV (Table 7, page 1404). Thirty-four percent (75,500) practiced these oral hygiene procedures more frequently. Frequency of flossing was daily for 26 percent (57,800) and at least twice per week for 18 percent (38,600). Thirty-six percent (79,000) reported never flossing their teeth. Self-examination was performed by 60 percent of the population twice per week or more. Eighty-one percent conducted self-examinations at least two times per month.

	DISCUSSION

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A strength of the HCSUS study is that it uses a national probability sampling design intended to produce a nationally representative sample of HIV-infected people receiving regular medical care. A limitation of the sampling method is that the population estimates are for the population of adults 18 years or older who were receiving medical care, not for the entire population estimated to be HIV-positive.⁵ Furthermore, only 40 percent of the subjects were receiving HAART, a regimen now in wide use that has had a significant impact on HIV progression.^8,11

One of the purposes of this article was to bring together in one place a number of descriptive findings regarding the adult HIV population in the United States that is receiving medical care. Analytic articles also have been published that deal with such topics as use of dental services, perceived unmet need for care, oral white patches and oral dryness.^12–19 Given the extent of the descriptive data, it is necessary to focus the discussion on a limited number of topics. The ones we have selected are education for dentists, health education for adults with HIV and public policy regarding provision of dental care for the adult HIV population.

Education of dentists. Dentists having knowledge of attitudes and beliefs of those with HIV can help improve the quality of doctor-patient communication, which is a component of high-quality dental care.

Overall, these dental patients were satisfied with the dental care they receive, and 84 percent felt that they could trust their own dentist to protect their confidentiality regarding HIV status. However, 8 percent did not trust their dentist to protect their privacy, and 8 percent were not sure. Related to this concern may be the finding that 18 percent of patients said that they had not made their dentist aware of their HIV status. An accurate and complete medical history is essential. Thus, specifically reassuring all patients on the confidentiality of their medical history may help improve the quality of the history by lessening this worry for all patients, including those with HIV.

The data on patient beliefs underlie the importance of communication to the patient regarding his or her treatment. The American Academy of Oral Medicine states that CD4 counts influence appropriate treatment planning,²⁰ which suggests that dentists should determine the CD4 count by consulting the physician responsible for the patient’s medical care. Yet, 58 percent of patients disagreed or strongly disagreed that their dentist did this, and 17 percent were not sure. Thus, only 25 percent thought that their dentist did consult with their physician. Dentists should both consult with the patient’s physician as necessary and inform the patient that this is being done.

Patients may not know what a good dental examination entails, but they have views regarding their examination. Only 10 percent of patients agreed with the statement that their dentist was careful in conducting the examination. Explaining to the patient the purpose and nature of the examination and all of the clinical findings, negative as well as positive, might help allay some of the suspicion or uncertainty regarding the care being taken when conducting the examination.

Furthermore, asking about patients’ concerns regarding their appearance and their worries as well as social activities and eating could provide useful information in diagnosis and treatment planning. It also could serve to build a constructive relationship with the patient that could lead to an improvement in such things as patient compliance with treatment regimens.

Continuing education courses for dentists that deal with the treatment of HIV patients should take note of the finding that 33 percent of patients reported receiving a prescription from a dentist in the past year. Specific issues regarding prescribing for patients with HIV should be included, as well as appropriate consultation with physicians regarding patient care.

Patient education. The finding that 32 percent of patients’ most recent dental visit was made because something was wrong indicates the need to emphasize the importance of visits for preventive dental care. About one-third of people increased their oral hygiene measures after learning that they were HIV-positive. This clearly is a time when many patients are seeking to do everything that they can to improve their health status and, therefore, health education messages can build on that interest. Self-examination for oral disease also is commonplace among those with HIV, and information can be presented on how to conduct such an examination and what indicators a patient might be able to identify. That 23 percent of these patients saw the dentist less often after learning that they were HIV-positive should lead to education regarding the fact that self-examination should not take the place of a dental examination. These patients may go to the dentist less because they are so focused on their medical care. Medical patient education also should stress the importance of oral health for HIV-positive people so that dental examinations are not neglected.

While patients generally trust their own dentist regarding confidentiality, 27 percent of patients say that they cannot trust dentists in general and 43 percent are not sure. Health education messages directed at HIV patients should emphasize that dentists place great importance on maintaining confidentiality. To the extent that those with HIV are reluctant to seek care or reveal their HIV status, recognition of this concern in community health education might serve to eliminate one of the barriers to the receipt of dental care before an emergency arises.

Public policy. Dental insurance status is an important predictor of use of dental services.²¹ With only 23 percent of our subjects having private insurance, public programs gain increased importance. Almost one-half of the population is enrolled in the Medicaid program, but a substantial number (41,200) accounting for about 40 percent of those in the program, live in states without adult dental benefits beyond treatment of pain and infection. A clear public policy imperative to increase access to dental care for those with HIV is to prevent the erosion of adult dental benefits where there is coverage, and to work to include adult dental benefits in states without such coverage. These efforts can occur at the state level or at the national level by seeking to mandate dental coverage within the Medicaid program. As Guay²² stated, "A sustainable Medicaid program must be developed."

Private dental practice is the bulwark of the care system for those with HIV: almost 60 percent of patients with a usual source of dental care received treatment in private offices. This source of care needs to be strengthened by providing patients with the ability to pay for treatment. Increasing the number of people covered by a dental benefit plan—one that provides a reasonable level of reimbursement to the practitioner—should be a policy goal for all Americans, but this has special importance for those living with HIV.

The safety net of public programs also needs strengthening. Public clinics or programs aimed at those with HIV are the sources of care for one-third of people who have a usual source of dental care. Dental schools provide care for 3 percent of this population (3,400), and the HIV/AIDS Dental Reimbursement program of the Ryan White CARE Act is an important element in providing access to care as well as training students.

Finally, all of the people in this study were under medical care. Yet more than one-third of patients did not have a usual source of dental care. Having a usual source of care or "dental home" is an important predictor of use of dental services.²³ Dental associations, public health workers and others could direct their efforts to establish linkages between sources of HIV medical care and sources of dental care to facilitate medical patients establishing a relationship with a dental care provider.

	CONCLUSION

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The HCSUS is the first to provide national estimates of the adult population with HIV who are receiving medical care. Descriptive oral health data from that study are provided to help the dental profession, those in public health, the HIV community, policy-makers and others to better understand the disease. This information can help inform the profession how it, the HIV community and public health workers can better respond to improve the oral health of and oral health care for this population.