HIV/AIDS Bureau - HIV Primary Care Guide 2004

The persons who were easy to recruit and retain in care are already enrolled; the more challenging patients await recruitment. Every clinic should 1) be linked to agencies providing HIV testing and services for persons with HIV and 2) make clinic access easy for the clients of those outside services.

Many clinics establish referral linkages with community services that provide HIV counseling and testing services (CTS), AIDS service organizations (ASOs), STD treatment facilities, family planning agencies, drug treatment facilities, local health departments, regional HIV/AIDS hotlines, and local hospitals and emergency rooms. Many clinics also offer free confidential or anonymous CTS using State or Federal funding.

Clinic personnel should build personal relationships with agencies that may provide referrals, invite staff of community agencies to visit the clinic, or hold an open house. Providers from ASOs, such as case managers, can be invited to accompany patients on clinic visits. Referring agencies must know what services the clinic provides and which patients it serves, as well as those it cannot serve. Clinics with Ryan White Care Act (RWCA) funding should be able to accept patients regardless of health insurance or ability to pay. Primary care clinics can benefit from having a brochure describing their programs and array of services, along with information about making appointments, hours of service, and so forth.

Clinics differ based on the characteristics of the people living in their catchment area and the expertise of clinic staff. Some successful clinics target a narrow but underserved population and concentrate on meeting the needs of that population. A youth-friendly environment may differ from one targeting the working poor.

Respect, cultural competence: Respecting patients and providing them with effective care builds trust and keeps them coming back. New clinic attendees may have strong feelings related to HIV infection (fear of death) or how they acquired it (issues of shame or of secrecy). They may lack trust in medical care (prior personal experiences or the legacy of the Tuskegee syphilis experiments) or in current treatments ("Everyone I knew who took AZT died…"). Patients encounter barriers where there are cultural differences or language barriers between themselves and the staff. Staff members should be trained to anticipate, recognize, and work with these issues.

Welcoming staff attitude: Patients should always be made to feel that they came to the right place (even when it is not true, and they must be referred on). Patients should receive understanding and support, even when they arrive in clinic without obtaining the required managed care referral form (at least the first few visits). Providers must know the target population and build a system that will make patients feel welcome. Many RWCA-funded clinics employ patient advocates, persons from the target community who may or may not themselves be HIV-infected. Advocates directly assist patients in negotiating the clinical care system and help patients ask questions or make their needs known to clinical staff. Advocates or peer support persons can be instrumental in helping patients build self-esteem and acquire new habits that will enable them to use health care services in a proactive manner. It is very helpful for patients to be able to forge a personal connection with at least one staff member.

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.

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 age-appropriate 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

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 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).

Table 16-2. Comprehensive Ambulatory HIV Programs
from the New York State AIDS Institute
Clinical services that must be provided by ambulatory HIV programs On site 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

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.

What can clinics do to ensure that patients receive the necessary array of services?

Clinic forms can be designed to remind providers of care standards, simplify data collection, and serve other purposes as well. Sample forms for initial and followup visits are posted on the HRSA HIV/AIDS Bureau (HAB) website (http://www.hab.hrsa.gov). They include reminders regarding clinical standards, reminders of services required for billing levels, checklists built around definitions used by RWCA grantees for reporting to HRSA, and other data for quality management. Staff members may rebel when confronted with new forms; however, using checklists often saves time by listing required elements of the visit and by reducing the amount of writing. Including clinical, data, and quality management staff in the process of designing forms eases the transition.

Information systems can produce reports useful to providers, for example listing a patient's prior diagnoses, medications, and sequential plasma HIV RNA levels and CD4 cell counts (see again the HAB website for examples). Similar flow sheets can be generated from electronic medical record systems; some commercial services also provide such services, but confidentiality must be assured. Periodic reports of achievement of clinical standards (viral load targets, opportunistic infection prophylaxis, vaccination, cancer screening, and other health maintenance activities) can easily be provided to individual providers, and to the clinic medical director, linking implementation of the chronic care model (see Chapter 1) and quality management (see Chapter 17).

Clinics can enable patients to better care for themselves by providing them with information about HIV and by building a community among them. Patients should be given education materials; a separate area with HIV-related materials may help maintain confidentiality. Some clinics display male and female condoms with instructions about their use and have available other information on safer sex and birth control. Much information is available for patients, including publications on medications, side effects, and adherence. Free materials are available from Federal and State web sites, and the pharmaceutical industry also produces some excellent materials.

Many ASOs and clinics host support groups for interested patients. Participation must be voluntary, and only patients comfortable with revealing their status to other patients will be willing to participate. Some groups target specific populations. Groups may be more successful if an experienced counselor or mental health provider leads them.
Some clinics hold classes on HIV and adherence. Clinics serving pregnant women and parents may include classes on birth preparation and parenting. Other clinics provide periodic symposia to keep patients up-to-date on treatment advances. For clinics that have a community advisory board, the board can be the organizing force for these community updates. Both public grants and the pharmaceutical industry support these events.

Some youth-oriented clinics arrange social events and outings for their patients. Some programs for children or mothers provide support services for both infected and affected children, ranging from formal psychological care to supportive recreational activities after school or during school breaks.

It is not enough to have staff from many disciplines on the payroll; rather, systems have to be created that allow staff to function as a team. Training with followup by supervisors is essential. Specific tasks of each staff member need to be assigned (Table 16-3). Ideally, the staff can meet for a few minutes prior to each clinic session to anticipate special needs and allocate personnel resources. Some clinics place a checklist on each chart at each visit, to indicate which team members a patient is meant to see that day and to confirm that all intended interactions have occurred.
The team's potential can best be utilized if there is a regular opportunity to meet and discuss patients outside of clinic sessions, often called multidisciplinary team meetings. When all members participate, the discussions can range from selecting antiretroviral regimens based on genotype or phenotype results for one patient to addressing chronic mental illness for another. Services for infected and affected family members can be coordinated at these sessions.

Controlled drugs are needed as part of comprehensive care of HIV-infected patients, for treatment of psychiatric conditions and pain. At the same time, many patients with HIV have had prior or have current issues with substance abuse. The clinic should have policies in place regarding prescription of controlled medications: how many prescription refills are provided at a time, how new refills are provided, access to controlled drug prescriptions or refills outside of normal clinic hours, and refills of lost medication or lost prescriptions. To avoid confusion or disagreement some clinics have patients sign copies of the clinic policy regarding use of controlled medications before they are given prescriptions. It may be necessary to provide formal notification to a substance abuse program or parole officer that the clinic is prescribing a controlled medication, specifying the drug, dose, and duration of treatment.

**Table 16-3. Clinic Staff Responsibilities**
Tasks prior to a clinic visit Remind every patient of appointments via phone call or postcard Review charts to list items to address during the visit Tasks during a clinic visit Verify patient's current contact information and current insurance status Orient new patients Assist with insurance gaps (teaching about need for referrals, help with insurance application or ADAP, etc) Assess other barriers to care and psychosocial needs Assess medication adherence Teach and provide behavior change counseling about medications and self-care Assess ongoing transmission behaviors Teach and provide behavior change counseling about transmission behaviors Educate about clinical trial opportunities (if applicable) Make referrals for psychosocial services Make referrals/appointments for medical, dental, mental health care Tasks following clinic sessions Make followup calls regarding new medication regimens or referrals Call or mail postcards to patients who miss their visits Help patients overcome barriers to clinic attendance Extract data and enter it into the information system (not necessary with electronic medical records)

It is a rare clinic that has the funding, personnel, and expertise to address all of its patients' psychosocial issues. Most patients need services from an array of agencies. Case managers assist patients in accessing the range of services and entitlements that can help them succeed in treatment. This includes assistance in applying for insurance; accessing support groups; accessing supplemental food, housing, homemaker and other concrete services; accessing mental health and substance abuse services. Case managers should perform periodic assessments of clients' needs and update comprehensive care plans every 6 months. Home visits can be very useful as part of the assessment. Some case managers or their agencies will provide selected direct services themselves; these may include short-term counseling, transportation for clinic visits, accompanying patients to clinic visits, and providing financial assistance for specific emergencies. Excellent case managers help motivate patients.

Close coordination between clinic staff and case management is important to avoid duplication of effort and services. Periodic case conferences between clinic staff and case managers are ideal. Written communication, for example sharing case management care plans, can be useful. Case management agencies and clinical sites need to obtain written consent from patients to share the information that allows coordination.

Clinics can develop relationships with community-based case managers or directly with providers of specific services, such as metal health, substance abuse, or housing. Personal contact between clinic and agency is important to establish the relationship, and ongoing contacts are necessary for coordination. Community organizations are often pleased to give in-service education to clinic staff in order to streamline the referral process. Clinics should make their expectations clear to community-based agencies. Clinics can function as advocates to ensure that their patients receive the attention and services for which they were referred. Periodic interdisciplinary meetings of clinic staff with representatives of community-based agencies, including case managers, are very useful.

Many clinics have created consumer advisory boards to participate in planning and quality management. Experiences have varied greatly, with some advisory board members educating themselves about the issues and providing expert input to these processes. Other boards act more as social event or support groups. Clinics are likely to have to train board members in technical background regarding HIV and care provision, and in the role of advisors. Board members must agree to confidentiality policies, even though information about individual patients or staff members should not be discussed. Clinics have to create meaningful opportunities for advisory board members to provide input: this may involve discussion of workplans in writing grant applications, planning outreach activities, modifying clinics to enhance recruitment and retention of patients, and participating in quality management teams. When consumers are living in poverty or otherwise difficult conditions, obtaining ongoing participation of volunteers may require providing transportation to meetings, meals at meetings, and reimbursement for childcare or similar expenses. Some clinics find it useful to pay officers of their advisory boards in order to enable the officers to devote adequate amounts of time to the project. If this seems contradictory to the spirit of volunteerism, we should remember how much continuing education of medical and nursing professionals relies on enhancements to recruit participation. Creating effective advisory boards takes time, but can be a valuable investment. Advisory board members, while providing an outside view of the clinic to the clinic management, often provide useful community outreach and improve public relations.

Less intensive consumer input involves the use of periodic satisfaction surveys or questionnaires of clinic patients, confidential or anonymous mechanisms for eliciting suggestions, and a publicly accessible grievance procedure. Clinics with advisory boards use these mechanisms as well.

Financial: Patient access is maximized in clinics that can accept Medicare, Medicaid (including Medicaid managed care), and county insurance programs. Clinics should have a sliding fee scale. Clinics should assist appropriate patients to enroll in the AIDS Drug Assistance Program (ADAP), to access the drug coverage or other clinical services that vary by State. Within designated metropolitan areas, RWCA Title I funding may be available. Clinics planning to serve a moderate-to-high volume of HIV patients can apply for a RWCA Title III planning grant. Clinics serving women, pregnant women, youth, and families are eligible to apply for Title IV funding. Clinics may collaborate with other agencies in seeking RWCA funding.

Personnel: A lone provider whose patients are self-sufficient or can access community-based services can "provide" comprehensive HIV/AIDS care. For most patients, care is more effective if multiple team members are available at the clinical site.

Facilities: In addition to the usual office layout, other facilities are useful. An examination room suitable for gynecologic exams is important. An apparatus for pulse oximetry is very useful in assessing patients with respiratory symptoms. Easy access to facilities for collecting venous blood, urine, and stool specimens should be available. On-site access to rapid tests that do not require CLIA certification may be useful, such as urine pregnancy tests, capillary blood glucose, and perhaps the newly licensed rapid whole blood HIV antibody screening test. Laboratory certification to perform urine analysis and microscopic examination of vaginal fluid specimens is very useful. Refrigeration to maintain vaccines and material for tuberculin skin testing is necessary. Refrigeration also enables the clinic to provide patients with on-site injection of medications required once a week or less frequently and to instruct patients in the use of more frequent injections.

Training and technical assistance: Patients look to nontechnical staff to corroborate information given by physicians and midlevel providers. Further, patients expect the same accepting attitude from all staff members. Thus, all staff need training in both technical and cultural matters. One important resource is the local performance site of the AIDS Education and Training Center (AETC) funded by HRSA to provide training and technical assistance to clinics. The local AETC and the National Clinicians' Consultation Warmline provide detailed and patient-specific education to assist clinicians in making treatment decisions. Written educational materials for staff, such as national and regional treatment guidelines, are available free on the web and are frequently updated. Many regional and national meetings provide training in both clinical care and prevention. Assistance with enhancing and implementing systems of care, including instituting a quality management program, is also available from the AETCs. Chapter 18 provides other resources for training and information.

National HIV/AIDS Clinicians' Consultation Center (Free and confidential advice from a multidisciplinary team):

HIV/AIDS Bureau. Accessed 4/04 (An array of technical assistance tools for clinic management are available at this HRSA website)