A Guide to Primary Care of People with HIV/AIDS - Canadian Public ...

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A Guide to Primary Care of People with HIV/AIDS Chapter 16: Clinic Management 16 Welcoming environment: Physically comfortable waiting and examination areas, with linguistically and culturally appropriate decoration and reading material, are important for patient retention. A clinic that serves parents or children should make available toys or children’s books. Orientation to clinic systems and rules: New patients need a brief description of clinic staff and services, routine and emergency procedures, prescription refill procedures, and after-hours followup. They must understand about requirements for referrals from managed care providers, and new patients may need help with such requirements. Patients must also be oriented to what is expected of them (eg, coming on time, calling to cancel or reschedule appointments) and the consequences of not fulfilling their responsibilities (eg, clinic rules regarding late arrivals). A handout or pamphlet with staff names, clinic hours and phone numbers, and emergency procedures can be very helpful. Systems to support attendance: Patients should receive reminders (by phone or mail) about 48 hours before each appointment. It is also useful to have a staff member contact patients who have missed appointments to find out what prevented them from attending and offer to reschedule. ASOs may have funding for transportation (eg, door-to-door taxi service for selected patients, van service, vouchers for use on public transportation). Other barriers may require a coordinated effort by the clinic staff, case manager, and others. Clinic sessions should be scheduled at times convenient for the patients; mid-to-late afternoon is best for school-age children, occasional evenings or weekends are good for working people. CLINICAL SERVICES NEEDED FOR HIV CARE What is the optimum array of services that an HIV clinic should provide? All patients with HIV need a similar array of services that must be provided either directly or through referral. Patients need providers knowledgeable in the diagnosis and treatment of HIV infection and its complications, including state-of-the-art use of antiretroviral therapy (ART). Services must address the clinical conditions associated with patients’ current or prior risk behaviors. Given improved life expectancy, patients need ageappropriate general preventive and screening services. The high rates of premorbid mental health problems in persons with HIV and mental health problems related to HIV disease make mental health services a key component of HIV care. Substance abuse treatment is crucial. Confronting the epidemic by including HIV prevention activities in clinical care sites is a new activity, challenging and critically important (see Chapter 4). The HIV/AIDS Bureau of the Health Services and Resources Administration (HRSA) lists basic services required for agencies to receive funding through the RWCA Title III (Early Intervention/Primary Care) Program (Table 16-1). Some States have produced more detailed lists for agencies wishing to receive special State-level funding for HIV care; see the New York State list for comparison (Table 16-2). Funded programs generally must demonstrate continuity in primary care, 24-hour access to emergency care, ongoing staff training, an administrative apparatus adequate to manage the program and its funding, a reporting system to meet the grantors’ requirements, and quality management. Programs that do not receive explicit funding for clinical care and/or support services need to rely more on referral networks. Table 16-1: HIV/AIDS Bureau Requirements for Title III-funded Early Intervention/Primary Care Programs • HIV counseling, testing, and referral • Counseling and education on living with HIV disease, including availability and use of treatment therapies • Appropriate medical care and monitoring, including CD4 cell monitoring, viral load testing, antiretroviral therapy, and prophylaxis and treatment of opportunistic infections, malignancies, and other related conditions • Oral health care, outpatient mental health care, substance abuse treatment, nutritional services, and specialty care either directly or through a formal referral mechanism • Appropriate referrals for other health services • Perinatal care including therapy to reduce mother to child transmission (MTCT) • Screening/treatment of TB Source: Adapted from Ryan White C.A.R.E. Act Title III Manual. Rockville, MD: HIV/AIDS Bureau, Health Resources and Services Administration. 1999(Section II):5. Available at http: //www.hab.hrsa.gov/CATIE/ Accessed 2/04.Table 16-2. Comprehensive Ambulatory HIV Programs from the New York State AIDS Institute Monitoring and treating the long-term complications of ART, such as insulin resistance, lipodystrophy syndromes, dyslipidemia, and osteopenia, are of increasing importance. Instituting formal activities to assist patients in behavior change is increasingly recognized as an essential component of HIV care. Hepatitis C diagnosis and management are of particular importance for patients who have had blood product 134 U.S. Department of Health and Human Services, Health Resources and Services Administration, HIV/AIDS Bureau
A Guide to Primary Care of People with HIV/AIDS Chapter 16: Clinic Management exposures or who were drug injectors. Screening for premalignant human papillomavirus (HPV) disease in men using anal Pap smears is potentially valuable, although it has not become a universal standard of practice. Clinics should also have a system in place to protect the safety of their employees in regard to occupational HIV exposure (See Chapter 10 as well as Suggested Resources below). On site Table 16-2. Comprehensive Ambulatory HIV Program Standards of the New York State AIDS Institute Clinical services that must be provided by ambulatory HIV programs • Age appropriate, confidential HIV counseling and testing • Initial and annual comprehensive medical evaluations, including substance abuse and mental health assessments • Cognitive function testing • Ongoing clinical HIV disease monitoring • HIV-specific therapies and prophylactic treatments, including treatment education and adherence monitoring • Routine gynecologic care and followup (including reproductive counseling, pelvic examinations, and Pap smears) • Routine family planning services • Case management • Patient health education, including risk reduction and nutrition counseling On site or via linkage • Access to consultations by specialists in infectious diseases • Core diagnostic and therapeutic services - laboratory, including early diagnostic methods to establish the infection status of children - radiology, including MRI - pharmacy - dental services - mental health services, including clinical social work, clinical psychology, and psychiatry as clinically appropriate • Other primary care, specialty, and subspecialty services - obstetrics - pediatrics, adolescent medicine, and pediatric subspecialties - ophthalmology - dermatology - outpatient surgery - clinical pharmacy - subspecialties of internal medicine, including gastroenterology, hematology, pulmonology, and oncology Source: New York State AIDS Institute. Comprehensive Ambulatory HIV Program Standards. Part 490 of Title 10 NYCRR. November 1994. What is different about providing HIV care compared with other types of medical care? HIV care is new; the epidemic was recognized in 1981, and potent therapy became available in 1996. Therapeutic options are much improved, but there is little room for error. Drug resistance may occur rapidly and is irreversible. The ongoing development of new therapeutic agents is impressive, yet is not rapid enough to ensure future therapies to persons who received inappropriate prescriptions, or who did not receive the requisite education, support, and counseling to succeed with their therapy. With therapies that have been in use for less than 10 years, much is still unknown about long-term outcomes. Juxtaposed against the need for expertise in HIV care is the need to expand access. The only prerequisite to developing expertise in HIV care is commitment. A wide range of providers may be the HIV experts for their communities: midlevel practitioners and physicians, generalists and subspecialists. Providing infected persons with the tools to succeed in their treatment and to avoid future HIV transmission may require stepwise behavior change. A persistent and nonjudgmental approach is most likely to be effective (for more on adherence see Chapter 7). Providers may have to change their own behaviors so they can be more effective in patient care. Most persons receiving HIV care reduce their transmission behaviors, lowering the risk of HIV infection for others. Others do not change their behaviors, or do so only partially, or relapse. Providing prevention interventions in a clinic protects the public health. Clinic staff may know sex and drug using partners of patients, and find themselves with a duty to warn those who may be unknowingly exposed. These issues will be familiar to those in tuberculosis and STD treatment settings; but for many these challenges are new (see Chapter 4 on HIV prevention and Chapter 13 on substance abuse). HIV/AIDS is associated with discrimination and stigma because of its association with sexual behavior and with drug injection, and because HIV is incurable and may still be eventually fatal. Historically, there has been discrimination because of fear of contagion based on misconceptions regarding transmission. Discrimination may still be encountered in families and communities experiencing HIV for the first time. 16 U.S. Department of Health and Human Services, Health Resources and Services Administration, HIV/AIDS Bureau 135
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