Clinic Management

Background

HIV outpatient care is unique in that it combines two very different approaches to patient care: long-term health care for individuals with a chronic condition, and the vital public health service of reducing transmission of an infectious disease. Thus, chronic treatment and retention in care are important both for individual patients and for public health.

HIV services often are provided to persons who have challenges in regard to participation in their own health because of discrimination, poverty, active substance use, or mental health disorders. The context of HIV care still is one of persistent stigma regarding HIV infection itself and discrimination against racial, ethnic, and sexual minorities who constitute the groups with the highest HIV prevalence and incidence. At the same time, funding streams from federal, state, and local governments have created opportunities for treatment of uninsured and underinsured individuals and provide resources for creating innovative, effective programs. The Affordable Care Act creates new opportunities to provide care for previously uninsured persons through two insurance mechanisms and other benefits described below. Treatment guidelines, operations research data, and technical support are available to assist in designing, operating, and improving service programs.

Patient Recruitment into Clinic

The persons who were easy to recruit and retain in care are already enrolled; the more challenging patients await recruitment. The U.S. Centers for Disease Control and Prevention (CDC) estimates that up to 25% of HIV-infected persons in the United States are not aware of their HIV infection (Branson, 2006), so there is still much work to be done to diagnose those individuals and link them to care. For newly diagnosed patients, studies show that there often is a substantial delay in attendance at an initial HIV care visit, with only 20-40% of them accessing care within 6 months of diagnosis (Mugavero, 2008). However, for the clinics, the number of newly diagnosed patients who present for care is substantial. A recent survey of 15 HIV programs across the country (median of 1,300 active patients each year) showed that a median of 250 (range 60-730) new patients were enrolled in each clinic each year (Yehia, 2008).

To facilitate linkage to care, every HIV clinic should 1) be linked to agencies that provide HIV testing and services for persons with HIV, and 2) make clinic access easy and comfortable for the clients of those outside services. Many HIV clinics establish referral linkages with community HIV counseling and testing services (CTS), AIDS service organizations (ASOs), sexually transmitted disease (STD) treatment facilities, family planning agencies, drug treatment facilities, local health departments, regional HIV 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 open houses. 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.

Various approaches may help facilitate the patient’s entry into care. A randomized study showed that using case managers to increase linkage of newly diagnosed persons to care can be effective: 78% of patients who had "strength-based" case management that promoted patient empowerment and self-efficacy kept an appointment within 6 months, whereas only 60% of patients without case management kept an appointment in the time frame (Mugavero, 2008).

Frequently, there is a delay of several weeks for a new appointment with an HIV clinician. Model programs have been established nationwide to improve linkage to HIV care. For example, the HIV clinic at the University of Alabama at Birmingham offers new patients an orientation visit in the HIV program within 5 days of their request for a new patient appointment. In this clinic, an HIV program staff member initiates a welcoming interaction during the patient’s first phone call requesting an appointment and invites the patient to an orientation visit. During that visit, a psychosocial assessment is performed, specimens are taken for baseline laboratory tests, any immediate health issues are addressed, and referrals for mental health or substance use disorder care are initiated, if indicated. The orientation visit is used to give patients information on how to use the clinic effectively, provide other on-site nonmedical services, and start processes to access health insurance or AIDS Drug Assistance Program (ADAP) services as needed. The full initial medical visit is scheduled for a later date. In a nonrandomized comparison, the no-show rate at that clinic dropped from 31% to 19% with that approach (Mugavero, 2008).

Success in linking newly diagnosed persons to care may be enhanced through the participation of HIV-infected consumers as peer advocates and peer navigators (see chapter Supporting Patients in Care). Either volunteer or paid peer advocates can meet newly

diagnosed patients who have been referred to the clinic, help familiarize them with the clinic services and staff, and help them adjust to both the fact of their HIV infection and their role as a chronic care patient. Groups for newly diagnosed persons co-led by a peer advocate and a professional as well as one-on-one interactions with patients within or outside the clinic (e.g., through a buddy system) can help newly diagnosed persons succeed in the clinic. In clinics that use peers, particular attention must be paid to confidentiality issues. The peers must be trained and supervised (see below), and the patients must agree to participate with peers, either individually or in groups.

Clinics differ in terms of the characteristics of people living in their catchment area and in regard to the levels of expertise of clinic staff members. Some successful clinics target a narrow but underserved population and concentrate on meeting the needs of that population. The environment and services offered by the clinic may be tailored to the patient population. For example, a youth-friendly clinic may differ in these respects from one targeting the working poor.

Retaining Patients in Care

Retaining patients in care is an ongoing challenge (see chapter Supporting Patients in Care). Among the 15 surveyed HIV clinics mentioned above, the median no-show rate for appointments was 28% (range 8-40%). For new patients, the range was 5-54% and for returning patients it was 2-40%. Across all the clinics there was a median annual loss-to-follow-up rate of 15% (range 5-25%) (Yehia, 2008). A number of approaches may help patients maintain continuous care in the clinic. An AIDS Education and Training Centers (AETC) working group is creating a toolkit for clinics to assist them in applying evidence-based methods to retention in care; this is available from the National Resource Center (NRC) of the AETC (see resources below).

Respect and 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 (e.g., fear of death) or how they acquired it (e.g., issues of shame or of secrecy). They may lack trust in medical care (from prior personal experiences or from historic events such as the Tuskegee syphilis experiments) or in current treatments (e.g., "Everyone I knew who took AZT died ..."). Some patients believe that HIV was created in government laboratories to target African-Americans and may or may not believe that the clinic staff is part of the conspiracy. It is important that all staff members be trained to anticipate, recognize, and work with issues such as these.

Patients may experience obstacles to care when there are cultural differences or language barriers between themselves and the staff members. Diversity among health care staff can further improve the experience of racial, ethnic, and sexual minority patients.

Welcoming staff attitude:

Providers must know the target population and build a system that will make patients feel welcome. Patients always should be made to feel that they came to the right place (even in cases in which they must be referred on to another provider or clinic). Patients should receive understanding and support, even if they arrive at the clinic without the required managed care referral form (at least for the first few visits).

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 follow-up. They must understand requirements for referrals from managed care providers, and new patients may need help with fulfilling such requirements. Patients also must be oriented to what is expected of them (e.g., arriving on time, calling to cancel or reschedule appointments) and the consequences of not fulfilling their responsibilities (e.g., clinic rules regarding late arrivals). A handout or pamphlet with this information can be very helpful. Patients need to know how to determine the insurance coverage and other benefits for which they may qualify, and how to find out their options if their insurance coverage changes.

Peer support:

Many programs have HIV-infected staff members who provide specific peer-support services. Patients who have had unpleasant experiences seeking medical care in the past, or those who are not used to engaging in medical care, may get better support from another consumer than from a nonpeer staff member. Youth especially may trust information from peers more so than from adult professional staff members.

Peer advocates or peer navigators may work in this role part time or full time, as either volunteers or paid staff. Often they work specifically to make new or recently returned patients comfortable in the clinic. Some programs designate consumers as peer navigators, emphasizing their role in helping new patients, or patients returning after being lost to care, in finding their way through the health care system and support systems. Peer advocates also can help patients ask questions or make their needs known to the clinic 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. Peers are especially helpful when they model good health behaviors, including adherence with appointments and medications and with avoiding unsafe sex or other HIV transmission activities. In some cases, peers have been the basis of a successful program, but in other cases peers model poor health behaviors and themselves become ill. Peers need to adhere to confidentiality rules and good work habits and need to provide accurate information to other clinic staff. Effective selection, training, and supervision of peers are extremely important.

Systems to support attendance:

Clinics should provide feedback and encouragement to patients about the importance of attending scheduled visits. This can be done through written materials such as posters and pamphlets, as well as through comments made by providers during clinic visits. These very inexpensive interventions have been shown to improve clinic attendance (Gardner, 2012).

Patients should receive appointment reminders about 48 hours before each appointment. Reminders typically are given by phone or mail, although text messaging or other forms of electronic communication may be more useful in some settings. It also may be effective to have a staff member contact patients who have missed appointments to find out what prevented them from attending, offer to reschedule, and try to eliminate barriers to clinic attendance.

Factors such as child care needs, work schedules, and transportation problems can be substantial barriers to attending clinic appointments. Addressing these and other challenges may require coordinated efforts by the clinic staff, case manager, and others. In some instances, AIDS service organizations and other community organizations may have funding available to assist with these efforts.

Some programs have a policy detailing their interventions following one or more missed visits: usually one or more phone calls comes first, then a letter to the last known address, and as a last measure, some programs will dispatch personnel to visit the last known address in an attempt to reconnect with a patient who is lost to follow-up. These efforts are more successful when patients are asked for current telephone, address, and other contact information at every clinic visit. Staff members must know to whom a patient has disclosed his or her status; in verbal and written correspondence, staff members must avoid unintended disclosure of the patient’s HIV infection.

It is important to document movement of patients to other locations (including correctional facilities) or other care providers whenever the information is known so that these patients are considered transferred rather than lost. Some states provide public lists of incarcerated persons; larger programs may use those lists to find patients who have been missing for some time.

HIV programs can be aggressive in trying to connect with patients who are missing, but also must respect explicit decisions by competent persons to change providers or to forgo medical care.

Outreach encounters to promote participation in care:

A study of seven sites across the United States, funded by the Health Resources and Services Administration (HRSA), found that outreach by health care professionals increased clinic attendance and that frequent outreach by any program staff member increased adherence with antiretroviral therapy (see "References," below). Outreach by medical professionals included efforts by physicians, nurses, or physician assistants to meet patients outside the HIV clinic setting, often in another part of a medical facility such as an inpatient unit. These encounters were the most expensive type of outreach, but the most effective in engaging new patients in care. Encounters with medical professionals did not increase adherence with medications, however. Other types of outreach, either face-to-face or otherwise (by phone, email, or postal service), by professional, nonprofessional, or paraprofessional staff members, increased adherence with medications, but not with clinic attendance. More frequent encounters of this type were associated with greater improvements in adherence. The results of the study suggest that initial face-to-face contact with medical providers is important for establishing trust that enables new patients to engage in care, and that frequent encounters with other staff members is important for maintaining patients on medications.

Special Population: Women of Color

A 2008 report commissioned by HRSA collected data from the published literature, key informant interviews, and a consultation meeting with Ryan White Care Act (RWCA)-funded providers to provide information on barriers and effective interventions to assist women of color in succeeding with HIV care. Three central themes were extracted from these varied inputs:

  1. Development of a responsive care environment that incorporates respect, cultural competency, and flexibility to meet women's needs;
  2. Incorporation of peers into the care system as trained and paid participants in the care teams; and
  3. Addressing women's needs through care coordination, flexibility, health system navigation, and better coordination and communication between medical and social service providers.

HRSA funded a number of clinical sites to test different methodologies applying these principles through the Special Programs of National Significance mechanism; these projects are ongoing and results are not yet available.

Models of Care

Chronic Care Model

Popular in recent years, the chronic care model refers to a mechanism for providing patient-centered care using a variety of staff personnel and interventions to maximize desired health outcomes. This approach has been most highly developed for diabetes care, but it can apply equally well to a wide range of chronic illnesses. In this model, patient training in self-care is key. In contrast to the tradition of teaching patients the pathophysiology of their health condition in lay terms, with this model, training involves focused skills building so that patients can better monitor their health status, use their discretionary medications, and know when and how to contact the professionals for assistance. Frequent contact between patient and clinical staff, both face-to-face and through other means, both in clinics and in the community, usually are involved. Care is directed toward panels of patients, not just individual patients. Program-wide monitoring of process and outcome variables, such as frequency and results of CD4 cell counts and plasma HIV RNA levels, informs the practice as a whole as well as the quality of care for individuals. These interventions have been shown to improve outcomes, but do not necessarily reduce costs because the staff time required can be substantial.

Patient-Centered Medical Home

The chronic care model concept has been merged with the concept of a home to coordinate care and medical records for children to create the current model of the Patient-Centered Medical Home or PCMH. This concept usually is applied to primary care providers and practices; however, it potentially applies to a specialist who cares for the most prominent or demanding of a patient’s health problems as well as other primary care issues. The chronic care model is limited to treatment of one health condition whereas the medical home model supplements such targeted care (e.g., HIV-specific care) with coordination of the other health services the patient may need. HIV programs often act as the primary care provider, especially for patients who do not have insurance and therefore have limited access to other providers, whether the practice is otherwise a primary care or specialty clinic. Many HIV clinics have the capacity to organize and implement a chronic care approach and to coordinate services across other specialties and providers in order to be a true medical home. Several national organizations provide certification of PCMH status to clinicians and practices. One organization is the National Center for Quality Assurance or NCQA (see details on its PCMH certification process on its website). NCQA will certify individual providers and practices even when they are located within larger institutions. Another organization is the Joint Commission, which usually certifies PCMH status within an organization that has Joint Commission accreditation for other purposes. General information about the concept and other agencies that provide certification is available online at the National Center for Medical Home Implementation. In some states or localities, insurers such as Blue Cross and Aetna have their own certification process. Some health plans provide additional payment to primary care clinicians and practices that are certified as medical home providers, to support the health informatics infrastructure, care coordination, teaching and skill building, and follow-up outside of office visits that are required to manage panels of patients in a proactive manner. The PCMH approach also will provide financial opportunities for practices that become involved in Accountable Care Organizations (ACO), as pay-for-performance models of reimbursement are implemented across the United States. HRSA provides technical assistance to Ryan White grantees interested in being certified as a medical home, and to those interested in learning the lessons of this process even if not seeking certification. Additional information regarding training, resources, and webinars is available on the HRSA Target Center website.

PCMH Neighbor

This is a concept for specialty practices who do not wish to or are not able to take up full care coordination for a patient, or who may not be eligible as specialists to become certified as a PCMH (see "References," below). With this concept, a specialist participates in timely and thorough sharing of information and care coordination with a patient’s primary care medical home, so that the full array of PCMH services is available without duplication but with the added expertise of the specialty practice. At this time, there is no additional reimbursement for this status. However, implementing this enhanced level of care coordination with the patient centeredness, proactive approach, and skill building that characterize a PCMH, is expected to improve outcomes and may create opportunities for enhanced reimbursement in the future. This coordination also will be useful for specialist participation in ACOs.

This is a concept for specialty practices who do not wish to or are not able to take up full care coordination for a patient, or who may not be eligible as specialists to become certified as a PCMH (see "References," below). With this concept, a specialist participates in timely and thorough sharing of information and care coordination with a patient's primary care medical home, so that the full array of PCMH services is available without duplication but with the added expertise of the specialty practice. At this time, there is no additional reimbursement for this status. However, implementing this enhanced level of care coordination with the patient centeredness, proactive approach, and skill building that characterize a PCMH, is expected to improve outcomes and may create opportunities for enhanced reimbursement in the future. This coordination also will be useful for specialist participation in ACOs.

Clinical Services Needed for HIV Care

Optimal array of services provided by an HIV clinic

At a minimum, HIV medical care providers need to offer confirmation of HIV infection, education, recommendations, and management regarding antiretroviral therapy; prevention, diagnosis, and management of HIV-related opportunistic diseases and treatment-related complications; screening and referral for common comorbidities, and linkages to other general health services. Most patients will need additional primary care and specialty health care and support services; it is often more effective and more convenient when these are available on-site rather than by referral. For health interventions to be successful, many patients will need assistance with health behavior change.

The services ideally provided by the HIV clinic include those on the list that follows. Detailed information on most of these topics is available in other chapters in this manual. These standards are derived from the primary care guidelines of the HIV Medicine Association of the Infectious Diseases Society of America (HIVMA/IDSA), the HHS Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents, the HHS Guidelines for the Prevention and Treatment of Opportunistic Infections in HIV-Infected Adults and Adolescents, the CDC guidelines on prevention services in HIV care programs, as well as U.S. Public Health Service Prevention Task Force and American Cancer Society recommendations (see "References," below).

  • Age-appropriate immunizations including HIV-specific indications for some, including pneumococcal vaccine, influenza vaccine, hepatitis A and B vaccines, quadrivalent human papillomavirus vaccine in appropriate age groups (see chapter Immunizations for HIV-Infected Adults and Adolescents).
  • Screening for STDs (syphilis, gonorrhea, chlamydia, trichomonas in women, hepatitis B and C) at enrollment and periodically. After the initial screening, new standards promote periodic screening for acquisition of hepatitis C in persons at risk.
  • Assessment of ongoing sexual or drug-use behaviors associated with HIV transmission, and counseling or other interventions to reduce transmission behaviors. Interventions regarding sexual transmission behaviors should be linked with family planning.
  • General health screening for hypertension, diabetes, dyslipidemia, and cardiovascular risks, and cervical, breast, and colon cancer. The role of anal cytology in screening for anal cancer remains uncertain because of limited data on effective management of anal dysplasia.
  • Care of common general medical illnesses including hypertension, dyslipidemia, uncomplicated diabetes, obesity, asthma, and chronic obstructive pulmonary disease. Care of a wider range of disorders, such as congestive heart failure and chronic kidney disease, will vary by practice.
  • Evaluation and care of common comorbidities including hepatitis B and C infection and latent and active tuberculosis (TB). Treatment of active TB, including directly observed therapy, often is provided by public health agencies; treatment of hepatitis may require referral to a specialist (though increasingly HIV providers are likely to manage treatment of HCV in coinfected patients as additional direct-acting antivirals for hepatitis C become licensed, with their improved efficacy and lower side-effect profile).
  • Provision or linkage to oral health care, nutritional services, and other medical specialties including ophthalmology, dermatology, and oncology.
  • Provision or linkage to HIV care for pregnant women, adolescents, and infected or perinatally exposed infants.
  • Behavior change for general health issues including smoking cessation and other unhealthy substance use, diet for weight control, and exercise.
  • Behavioral health services for adaptation to the illness, mental health disorders, and substance-use disorders including unhealthy alcohol use.
  • Provision or linkage to social support services, including community-based case management.
  • Additionally, clinics should have a system in place to protect the safety of their employees in regard to occupational HIV exposure (see chapter Occupational Postexposure Prophylaxis).

Resources required in providing comprehensive HIV care

Patient access is maximized in clinics that can accept Medicare, Medicaid (including Medicaid managed care), and county insurance programs. Clinics with access to Ryan White Treatment Extension Act funding must accept patients regardless of health insurance status or ability to pay. Federally qualified health centers also can accept uninsured patients and have an important role in expanding access to care. Every state receives Ryan White Part B funds for an ADAP to pay for antiretroviral agents and often other drugs for the uninsured or other eligible persons with HIV. Details vary by state and are available at each state’s HIV hotline. Clinics should assist appropriate patients to enroll in the ADAP, and to access the drug coverage or other clinical services that vary by state.

Within designated metropolitan areas, Ryan White HIV/AIDS Program Part A funding may be available. Clinics planning to serve a moderate-to-high volume of HIV patients can apply for a Ryan White Part C planning grant. Clinics serving women, pregnant women, youth, and families are eligible to apply for Ryan White Part D funding. Clinics may collaborate with other agencies in seeking Ryan White funding. Smaller programs may become satellites of larger Ryan White-funded programs. Other individual providers or small clinics may be eligible for Part B reimbursement for medical care of uninsured persons, by working with local case management agencies.

The ACA created online insurance marketplaces or exchanges, at which persons and families with incomes between 100% and 400% of the Federal Poverty Level (FPL) can purchase affordable insurance using tax rebates (for 250-400% of FPL) and other subsidies (for 100-250% of FPL). In addition, many states are expanding Medicaid eligibility, for example to persons and families with annual incomes up to 138% of FPL. Another benefit of the ACA for persons with HIV is the requirement that core health benefits, including evidence-based preventive services, are provided by all health plans. HIV patients will benefit from the fact that preexisting conditions no longer disqualify persons from obtaining individual health insurance at competitive rates, and that more employers are now expected to provide health insurance for employees. Ryan White Part B Drug Assistance Program (DAP) funds may be used to assist patients with the costs of health plans if doing so is less expensive than providing direct benefits to DAP beneficiaries. Details about the plans available on the exchanges, their costs and benefits, the role of DAP, and Medicaid eligibility vary by state. HIV provider organizations will need to contract with some of the new plans available on their state exchanges, and providers will need to educate themselves on details of their plans. Local organizations have been designated as Certified Application Counselors (CACs), which allows trained staff to assist patients with enrollment on the exchanges and to certify that hardcopy documentation provided by patients, if needed in the course of online enrollment, is accurate. Other help may be provided by ACA navigators, who can assist clients with enrollment decisions but are not able to certify clients’ documentation. Specific details and mechanisms for this interaction between ACA insurance benefits and Ryan White benefits are still evolving. Updated information on the benefits of the ACA for persons with HIV is available on the HRSA Target Center website.

Personnel:

For patients who are self-sufficient or can access community-based services on their own, a lone provider potentially can deliver comprehensive HIV care. In most circumstances, however, patient care needs are met more effectively when 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 examinations 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 Clinical Laboratory Improvement Amendments (CLIA) certification may be useful, such as urine pregnancy tests, fingerstick blood glucose tests, and perhaps the rapid HIV antibody screening tests. 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.

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 clinic personnel need training in both technical and cultural matters. One important resource is the AETC National Resource Center and the local performance sites of the AETCs funded by HRSA to provide training and technical assistance to clinics. The NRC, local AETCs, and the website of the Clinician Consultation Center 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, may be obtained free of charge via the Internet and are updated regularly. 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, also is available from the AETCs. See chapter Web-Based Resources for other resources for training and information. The Clinician Consultation Center's Warmline provides expert clinical advice on HIV/AIDS management for health care providers. This telephone consultation service is available Monday through Friday, 9 a.m. to 8 p.m. eastern time, at 800-933-3413.

Implementing interdisciplinary care in the clinic

It is not enough to have staff members from many disciplines on the payroll; rather, systems that allow staff members to function as a team must be created. Training with follow-up by supervisors is essential. Specific tasks for each staff member need to be assigned (see Table 1). Ideally, members of 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 be best utilized if there is a regular opportunity to meet and discuss patients outside clinic sessions, in multidisciplinary team meetings. When all members participate, the discussions can range from the selection of antiretroviral regimens for a patient to addressing the patient’s adherence issues or chronic mental illness. Services for infected and affected family members also can be coordinated at these meetings.

Table 1. Clinic Personnel Responsibilities

Tasks prior to a clinic visit

  • Remind every patient of appointments via phone call or mail.
  • 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 (e.g., teaching about need for referrals, help with insurance application or ADAP).
  • 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 follow-up calls regarding new medication regimens or referrals.
  • Call or mail correspondence to patients who missed their visits.
  • Help patients overcome barriers to clinic attendance.
  • Extract patient data and enter it into the information system, or upload data from an electronic medical record into reporting or data management software.

Support Services and Linkages Needed for HIV Care

Case management and support services enhance clinical care

Case managers assist patients in accessing the range of services and entitlements that can help them succeed in treatment. This may include helping patients apply for insurance; access support groups; access supplemental food, housing, homemaker, and other concrete services; and access mental health and substance abuse services. Excellent case managers also help motivate patients.

Traditionally, case managers should perform periodic assessments of clients’ needs and update their comprehensive care plans at least every 6 months. Home visits can be very useful as part of the assessment. Some case managers or their agencies will provide certain 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.

In many localities, HIV case management has been a service provided by community-based agencies. With the evolution of the PCMH concept, and a stronger need to have health care coordination for patients with multiple complex medical conditions, the approach to HIV case management is evolving. A new, and perhaps more useful, model is one in which community-based case managers provide linkage and follow-up for community-based services such as health insurance, transportation, housing, food security, income, and psychosocial support generally. These case managers often have training in a psychosocial discipline. At the same time, medical case managers, usually nurses, provide coordination of medical care services, with support for appointment and medication adherence, side-effect management, self-care, and clinical monitoring between office visits.

Close coordination between clinic staff and case management is important for avoiding duplication of efforts and services. Periodic case conferences between clinic staff and case managers are ideal. Written communication, for example, when 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.

Creating useful linkages with community-based services

Clinics can develop relationships with community-based case managers or directly with providers of specific services, such as mental health, substance abuse, or housing services. Personal contact between staff members of clinics and outside agencies is important for establishing the relationship, and ongoing contacts are necessary for coordination. Community organizations often are pleased to give in-service education to clinic staff personnel 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.

Consumer involvement in HIV clinical care

Many clinics have created patient (consumer) advisory groups to participate in planning and quality management. The role these groups take depends on the specific clinic; some advisory boards educate themselves about clinic issues and provide expert input to clinic processes. Other boards act more as social event or support groups. See chapter Supporting Patients in Care for further information.

Enhancements to increase the HIV clinic's effectiveness: information and support

Clinics can enable patients to better care for themselves by providing them with information about HIV and by helping to build a community among them.

Much information is available for patients, including publications on medications, side effects, and adherence. Many clinics display HIV-related education materials, including information on safer sex practices and birth control; many also provide male and female condoms with instructions about their use. In some clinics, a separate area for educational materials may help clients maintain confidentiality. Free educational materials are available from federal and state HIV websites, and the pharmaceutical industry also produces some appropriate materials.

Many ASOs and clinics host support groups for interested patients. Participation must be voluntary, and only patients who are comfortable with revealing their status to other patients will be willing to participate. Some support groups target specific populations. Groups may be more effective if an experienced counselor or mental health provider leads them.

Some clinics hold classes on HIV and adherence. Other clinics provide periodic symposia to keep patients up to date on treatment advances. Clinics serving pregnant women and parents may include classes on birth preparation and parenting. For clinics that have a community advisory board, the board can be the organizing force for these community updates. Both public grants and funds from the pharmaceutical industry may be used to support these events.

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

Medical Information Systems: Tools for Enhancing Care

Medical information systems may include Practice Management Software (PMS), Electronic Health Records (EHRs), and Personal Health Records (PHRs). These three types of software may be available as a suite or as separate products that can be linked, although the linkage of separate products sometimes is challenging. Software products may be designed to run on one desktop computer in a small practice or on a computer server that can be accessed by many users simultaneously, or they may be based on the Internet and managed by the vendor. In all instances, backup of the data and maintenance of confidentiality and compliance with Health Insurance Portability and Accountability Act (HIPAA) rules and other laws are necessary.

PMS refers to software used principally for scheduling and billing; it includes information on patient demographics, insurance or payer, attendance with appointments, diagnoses, and sometimes other information. This is very useful in tracking clinic productivity and patient adherence with visits, and in developing an overview of a patient population and understanding the finances of a practice. PMS software can provide data regarding some quality measures, because services such as vaccinations and procedures performed within the practice can be tracked easily.

EHR refers to software used for clinical care, as a substitute for or supplement to a paper medical record. Providers enter their notes into these systems, and clinic staff document procedures and interventions performed in the office. With many systems, prescriptions may be written within the system and sent to pharmacies electronically or by fax, diagnostic tests may be ordered, and test results may be sent electronically into the EHR for clinician review and action. Paper documents often can be scanned into the system so that hard copies of outside reports can be included in the medical record. EHRs that substitute for paper records can reduce issues of storage, retrieval, and access to paper charts once the transition is complete.

EHR refers to software that the patients can access to see part or all of their medical record. These systems are designed to empower patients as members of their health care team, to provide detailed information to them, and to promote interaction between the consumer and provider.

Potential advantages of EMR, PHR, and EHR

In an era of transformation of the U.S. health care system, much is said about the potential of these software products to increase efficiency and reduce errors. While this potential is real, substantial effort and investment is required to deploy and maintain systems that are useful to clinicians, administrators, and payers. An EHR for a small office or one that is deployed only in an HIV program can be managed fairly easily, and some products developed specifically for HIV care are available. An EHR for a large organization, such as a multispecialty group, is more complex and requires much more planning, training, maintenance, and sometimes customization to meet the needs of all the users.

Success in EHR implementation is greater when the users are involved in the selection and implementation of the system. Commercially available systems run on servers for large organizations may provide options for customization; however, customization greatly increases the cost and complexity of installing the software updates that are likely to be required.

EHRs may be text based (such as the system used by the Veterans Health Administration) or data based. Text-based systems are often quicker to learn; however data-based systems may provide more information for quality and program management and reporting needs and may be more useful for billing functions. Some EHR software packages are available at no cost (such as the Veterans Health Administration system and other open-source software) whereas others are available commercially and are maintained by vendors.

Once fully implemented, EHRs are expected to improve quality by improving communication and coordination among clinicians, reminding clinicians about standards of care and the timing of health maintenance or monitoring, avoiding errors associated with handwritten notes or prescriptions, documenting prescriptions, and providing warnings on potential drug interactions or hazards associated with specific diagnoses. EHRs are expected to lower costs by reducing the expense of maintaining paper records and by reducing duplication by sharing prescriptions, test orders, and test results among all users. EHRs can provide both process and outcome data for monitoring and for quality improvement activities (see chapter Quality Improvement), and data for Ryan White grantee reports. They also may make it easier for practices to fulfill and document adherence with the standards of payers.

Medicare and other payers are currently offering incentives for specific uses of EMRs, for example when at least 75% of prescriptions are sent electronically (because this is thought to reduce prescription errors) and for other types of "meaningful use" that are thought to improve the organization of care and adherence with clinical care standards.

Cautions

These software packages are complex entities that require substantial staff time and effort, hardware purchase and maintenance, training, and modifications in workflow. EHRs are not simply replacements for paper records; effective use involves changes in the work habits of clinicians. Successful implementation of an EHR system requires working with the end users as the system is developed so that reasonable compromises and accommodations can be made. Choices must be made regarding both the software and the hardware to be used (e.g., a laptop computer used by a single clinician in multiple examination rooms versus a fixed desktop computer in each room). An EHR system that must share data with another system such as a hospital EHR or a laboratory reporting system can be very complex and require substantial investment of time and money, even when the different software systems use compatible data standards. Effective implementation often occurs over the course of years. Implementation of EHR systems is not a panacea and will not solve all health care system problems, but use of EHRs is likely to be a necessity for functioning in the evolving systems of health care finance and reimbursement, as well as an essential tool for monitoring and assuring quality of care for the individual patient and at a population level.

Ensuring that patients receive necessary services at clinics without EMRs

At clinics in which paper charts are in use, forms, checklists, and flow sheets can be designed to remind providers of care standards, simplify data collection, and serve other purposes as well. Sample forms for initial and follow-up visits are posted on the HRSA HIV/AIDS Bureau (HAB) website. They include reminders regarding clinical standards, reminders of services required for billing levels, checklists built around definitions used by Ryan White HIV/AIDS Program grantees for reporting to HRSA, and other data for quality management. These instruments often can be used to generate reports to individual providers. Staff members may find it challenging to adjust to using new forms; however, using checklists often saves time by listing required elements of the visit and by reducing the amount of writing. Including representatives from clinical, data, and quality management staffs in the process of designing forms increases the acceptability of new forms or procedures.

Effective Management of HIV Programs

Managing a program with all the components described in this chapter is challenging. For enhancing communication and advancing the clinic’s objectives, staff meetings are important. Smaller organizations may include the entire staff at monthly meetings, whereas larger organizations may have staff meetings less often, such as on a quarterly basis. Some larger organizations find it useful to have a monthly interdisciplinary meeting of program leadership, with representation of the different disciplines or program components, such as nursing or clinical care, psychosocial support, data and quality management, behavioral health, research, finance, administration, satellite services, and consumers. These coordinating meetings provide an opportunity for personnel from each discipline to update others on current activities, challenges, successes, and initiatives. They also provide a regular forum for updates on fulfilling grant-related work plan tasks and reviews of financial reports. Minutes of the meetings, which include decisions taken and assignments made, should be prepared and circulated to participants; minutes should be reviewed at the subsequent meeting and reports on assigned tasks should be delivered.

These larger organizations also may have monthly meetings by discipline, for example, comprising the nursing or clinical staff, to transmit information from the larger meeting and to coordinate the discipline-specific activities. In smaller programs, quality management may be part of monthly staff meetings whereas in larger programs it is more practical to have a separate quality management committee (see chapter Quality Improvement).

HIV programs often are contained within larger health organizations, and may be outliers with regard to the patients they serve and other features. It is important for program leadership to build and maintain support within the host institution. Where applicable, this may involve reminding the host institution of the grant or other funding the program generates. HIV programs often are on the forefront of innovative health care delivery, for example, in adopting quality management approaches and using other data to assist program management, incorporating EMR and PHR systems, implementing interdisciplinary care that integrates medical care with behavioral health, using a chronic care model or providing a medical home for patients, and linking with community-based programs. An important task for HIV program leadership is making the host institution feel proud and supportive of the HIV program itself.

Suggested Resources

  • National Resource Center of the AIDS Education and Training Centers
  • Clinician Consultation Center (free and confidential advice from a multidisciplinary team):
    • National HIV/AIDS Telephone Consultation Service (Warmline): 800-933-3413 (Monday-Friday, 9 a.m. to 8 p.m. eastern time)
    • National Clinicians' Post-Exposure Prophylaxis Hotline (PEPline): 888-448-4911 (9 a.m. to 2 a.m. eastern time/7 days a week)
    • National Perinatal HIV Consultation and Referral Service (Perinatal Hotline): 888-448-8765 (24 hours a day/7 days a week)

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