Here's the JAMA paper on management:
Controversies - October 8, 1997
Management of Patients With HIV/AIDS
Who Should Care?
Charles E. Lewis, MD, ScD
FIFTEEN YEARS after the first description of persons diagnosed as having the acquired
immunodeficiency syndrome (AIDS),[1] and after almost 600,000 cases have been reported to the
Centers for Disease Control and Prevention (as of the end of 1996),[2] an issue under intense
debate is that of who should provide medical care for persons with human immunodeficiency virus
(HIV) or AIDS.
It was 6 years after the initial report of AIDS cases before the first federal effort to educate health
professionals with regard to this problem was formally initiated by establishing AIDS Education and
Training Centers (AETCs).[3] At that time, about 66 000 AIDS cases had been reported to the
Centers for Disease Control and Prevention (using different criteria for the diagnosis than at
present).[4]
The 15 AETCs currently in operation are located throughout the United States. The budget for
AETC operation during the past 10 years has been approximately $128 million, and approximately
$16.2 million is appropriated for fiscal year 1997, according to Bruce Martell, MA, acting branch
chief of the National AIDS Education and Training Center Program, Bureau of Health Professions,
Health Resources and Services Administration (oral communication, May 1997). The general
approach taken by these centers has been to offer 3 levels of education to health professionals: (1)
short didactic presentation of the latest information on AIDS etiology, epidemiology, diagnostic
techniques, and treatment; (2) workshops of 3 to 4 hours that provide an opportunity for expansion
of topics covered in level 1 presentations and include participant interaction; and (3) hands-on
clinical experiences in providing care for patients with HIV infection, supervised by clinical experts.
These "clerkships" vary in length, but many are approximately 1 week.
Why should this approach be questioned now? The recent approval by the Food and Drug
Administration of 4 protease inhibitors plus publication of a provocative article by Kitahata et al[5]
have prompted the question, "Who should care for persons with AIDS?"
The report by Kitahata et al[5] revealed significant differences in median survival time for patients
with AIDS cared for by primary care physicians with the least experience with AIDS vs patients
with AIDS under the care of physicians with the most experience with AIDS (the latter had cared
for an average of 6.7 HIV-positive patients previously). This difference persisted after adjustment
for severity of disease and the era in which the diagnosis was made. The results are clear-patients
of "experts" had better outcomes. It is important to remember that this study occurred before the
advent of newer therapeutic drugs; however, its results suggest that clinician experience, even with
the limited therapeutic armamentarium available in 1994, had a significant effect on median survival
time.
A recent document, "Guidelines for the Use of Antiretroviral Agents in HIV-Infected Adults and
Adolescents,"[6] reflecting the consensus of the US Department of Health and Human Services
Panel on Clinical Practices for the Treatment of HIV Infection, includes an acknowledgment of the
rapid evolution of information about treatment for patients with HIV disease. The guidelines indicate,
"These recommendations are not intended to substitute for the judgment of a physician who is expert
in the care of HIV-infected individuals," although "expert" is not defined. In contrast, the consensus
panel felt that physicians who treat HIV-infected persons, and who themselves are not HIV experts,
should establish an ongoing relationship with an expert. "It is important to note that the Panel felt that
where possible the treatment of HIV-infected patients should be directed by a physician with
extensive experience in the care of these patients. When this is not possible, it is important to have
access to such expertise through consultations."
In the section, "Considerations for Initiating Therapy in the Patient With Asymptomatic HIV
Infection," the term adherance appears 7 times. Proposed therapy for HIV infection suggested by
the guidelines includes multidrug combination therapy with complex dosing schedules. While there
are no published studies of levels of adherence with the suggested treatment regimens, the likelihood
of some degree of nonadherence raises serious concerns about the emergence of resistant strains of
virus. Literature on the general topic of adherence indicates that a significant percentage of patients
will be nonadherent, despite education.[7] Clearly, ways to monitor and deal with nonadherence will
become increasingly important.
The guidelines contain no recommendations for the means to accomplish the suggested patterns of
referral between "experts" and "nonexperts." Existing studies suggest that with regard to the referral
process, physicians do not always refer to someone "more expert," but may refer to someone whose
social status may be greater, to someone known to them personally, or to someone whom other
patients have been referred in the past, regardless of his or her special expertise.[8,9] There is also a
concern that given the increasing incorporation of medical practices, referrals could violate federal
laws if physicians refer patients to physicians in medical groups in which the referring physician has a
financial interest without full disclosure of this interest to the patient. Clearly, the business of patient
referrals has become more complex.
The suggested regionalization of care provided by primary care practitioners and AIDS-care
specialists presents a problem for many areas of the United States, given the current distribution of
physicians. For example, as of December 31, 1996, California was reported to have 98 157 AIDS
cases (16% of AIDS cases in the United States).[2] The state is made up of 58 counties; 24 are
nonmetropolitan areas. A telephone survey of a random sample of primary care physicians in these
rural counties revealed that 65% were caring for AIDS patients.[10] Could these primary care
clinicians (mostly family physicians) ever become "experts"? Given the number of patients with AIDS
living in these counties, more than half of physicians now caring for a patient with HIV would have to
refer that patient to another physician caring for patients with HIV or AIDS, if a physician's practice
were to attain the number of patients (6.7) cared for by "experts" in the study by Kitahata et al.[5]
There are no infectious disease experts in these rural California counties, and in 5, no general
internists are in practice.
The AETCs responsible for providing education to practitioners in the face of the growing
complexity of HIV care are now faced with an interesting dilemma. The approach taken for the past
10 years presumed that every physician or health professional should be able to establish a diagnosis
(ie, take an adequate history and offer testing), and subsequently begin treatment for patients who
test positive for HIV. However, this strategy would now seem to be doubtful, at least in terms of
expecting the primary care physician to continue as the primary treating physician for these
HIV-infected patients. What is now being proposed by some is to limit the role of most primary care
physicians to that of screening and diagnosis, and then either referring to or establishing a contact
with an "AIDS expert" to plan a program of therapy.[6] This is especially true as the "hit early and
hit hard" approach[11] to antiretroviral treatment is now widely accepted by many leaders in the
field.
While it is relatively easy to establish and control the limits of practice of physicians within
institutional settings through the designation of clinical privileges, ambulatory care is less structured
and few controls are provided to cover the extent to which primary care clinicians will limit their
practice to assessment and subsequent referral. Moreover, organizational policies are difficult to
enforce. As of 1997, within health maintenance organizations in large metropolitan areas, a policy of
AIDS care by "experts" has been recommended but achieved only to a limited degree among
groups of physicians that include primary care clinicians and "AIDS specialists." According to Mark
Katz, MD, AIDS coordinator for Southern California Kaiser-Permanente Medical Group (oral
communication, March 1997), a recommendation that patients with AIDS be cared for by
designated "AIDS specialists" has been implemented to a variable degree in the 10 regions of this
organization.
It is surprising that by mid 1997, AIDS advocacy groups have not seized on, to a greater extent, the
relevance of the findings of Kitahata et al[5] and the obvious growth in complexity of decision
making with regard to the medical management of persons with HIV or AIDS. By now, one would
have presumed that these groups would be encouraging persons with HIV infection to seek care
from physicians who are "AIDS experts." However, the lack of firm definition in the literature of an
"expert" suggests that it is possible for physicians who might be capable but who do not wish to see
these patients to decline to be known as "AIDS experts," while those who wish to be so regarded
may do so, regardless of their experience.
Is it possible that a primary care physician can become an "AIDS expert"? Yes, if that term is
reserved for physicians who have received high-quality training and who are seeing a sufficient
number of patients to present the scope of intellectual challenges necessary to become
knowledgeable regarding use of viral load testing, selection of appropriate combinations of drugs,
adherence issues, and the current psychosocial milieu. However, in rural areas of many parts of the
United States, there simply will be too few patients available within a county or a cluster of counties
to provide this level of clinical experience for any practitioner.
However, a possible advantage of being treated for HIV infection in the primary care setting may
include a more extensive and ongoing relationship between primary care physicians and patients and
between physicians and patients' families and significant others. A long-term relationship with
patients and an in-depth understanding of the patient as an individual may well serve to promote the
adherence necessary for optimal medical therapy.
While science may have propelled us into a position suggesting that care of HIV-infected persons is
best given by "AIDS specialists," the reality is that a variety of barriers such as geography,
economics, and professional pride may thwart the intentions of policymakers. Clearly, the most
important issue is that patients receive appropriate, up-to-date care from a qualified professional.
One hopes that the physician who assumes that role will really care for these patients.
From the University of California, Los Angeles, School of Medicine.
Reprints: Charles E. Lewis, MD, ScD, Center for Health Promotion and Disease Prevention,
University of California, Los Angeles, Box 951772, Los Angeles, CA 90095-1772 (e-mail:
lewis@admin.ph.ucla.edu).
References
1. Gottlieb MS, Schroff R, Schanker HM, et al. Pneumocystis carinii pneumonia and mucosal
candidiasis in previously healthy homosexual men: evidence of a new acquired cellular
immunodeficiency. N Engl J Med. 1981;305:1425-1431.
2. Centers for Disease Control and Prevention HIV/AIDS Surveillance Report. 1997;8:7.
3. Public Health Service Act, 6 USC 776.
4. Centers for Disease Control and Prevention. Trends in AIDS diagnosis and reporting under the
expanded surveillance definition for adolescents and adults-United States, 1993. MMWR Surveill
Summ. 1994;43:826-831.
5. Kitahata MM, Koepsell TD, Deyo RA, Maxwell CL, Dodge WT, Wagner EH. Physicians'
experience with the acquired immunodeficiency syndrome as a factor in patients' survival. N Engl J
Med. 1996;334:701-706.
6. Panel on Clinical Practices for Treatment of HIV Infection, US Dept of Health and Human
Services. Guidelines for the use of antiretroviral agents in HIV-infected adults and adolescents.
Federal Register. June 19, 1997;62:33417-33418.
7. DiMatteo MR. Enhancing patient adherence to medical recommendations. JAMA. 1994;271:79,
83.
8. Kraft SK, Marrero DG, Lazaridis EN, Fineberg N, Qui C, Clark CM Jr. Primary care
physicians' practice patterns and diabetic retinopathy: current levels of care. Arch Fam Med.
1997;6:29-37.
9. Hummell HJ, Kaupen-Haas H, Kaupen W. The referring of patients is a component of the
medical interaction system. Soc Sci Med. 1970;3:597-607.
10. Lewis CE. AIDS-related experiences of primary care physicians in rural California, 1995. West
J Med. 1996;164:415-418.
11. Ho DD. Time to hit HIV, early and hard. N Engl J Med. 1995;333:450-451.
(JAMA. 1997;278:1133-1134) |
