Guide HIV/AIDS

Introduction viiIntroductionHIV/AIDS clinical care has improveddramatically over the decades, given theavailability of new medications and abetter understanding of how best to useantiretrovirals and deliver primary careto persons living with HIV/AIDS. Positivechange on such a massive scale, however,brings with it new demands on clinicians.The developers of the Guide strive to beresponsive to how HIV/AIDS clinical care isprovided today.Along with innovations in HIV drugtherapies, HIV/AIDS care has become morecomplex than ever before due to increasingcomorbidities that are attributable to HIVtreatment and the aging of the HIV-infectedpopulation in the United States. Patient needsalso have expanded across a broad spectrum ofmedical, psychological, behavioral, and socialissues. Notably, significant numbers of infectedindividuals are identified and enter care late inthe course of their HIV disease, confrontingclinicians with complex and immediate carechallenges. A notable proportion of HIV/AIDS primarycare in the United States is provided byadvanced practice nurses and physicianassistants.The Guide for HIV/AIDS Clinical Care is apillar of the Ryan White HIV/AIDS Program’smission to continuously improve HIV/AIDSclinical care. The Guide was first published in1993 as a collaborative effort of several regionalAETCs. It was subsequently updated andexpanded in 2006 and 2011. The version beforeyou incorporates many new insights, but thetime-tested format has been retained – easyaccess to crucial facts for a busy clinician. Shortages in the health care work force areworsening. Experienced staff members areaging and retiring, a limited number of newclinicians are entering primary care andspecializing in HIV/AIDS care, and fewerclinicians are available in geographic areaswith limited resources.As a result, front line primary care providersmay be less familiar with management of HIV/AIDS disease, as outlined in U.S. Departmentof Health and Human Services treatmentguidelines (available at aidsinfo.nih.gov) andclinical practices presented in this Guide.By presenting best practices in the clinicalmanagement of HIV/AIDS disease, the Guidecan help us continue the remarkable advancesin HIV/AIDS care that have made the RyanWhite HIV/AIDS Program a model for healthcare delivery for our Nation and for the world.— Laura W. Cheever, MD, ScMAssociate AdministratorHIV/AIDS BureauU.S. Department of Healthand Human ServicesHealth Resources and ServicesAdministration (HRSA)IntroductionSince the early days of the epidemic, clinicianshave received training in HIV/AIDS clinicalcare through the AIDS Education andTraining Centers (AETCs) Program – theclinical training arm of the Ryan White HIV/AIDS Program that is administered by theHealth Resources and Services Administration(HRSA) and its HIV/AIDS Bureau (HAB). TheAETC network conducts more than 14,000training events each year with approximately143,000 health care providers in attendance. With more routine HIV testing in medicalsettings, a large number of individuals areentering care via primary care sites that haverelatively limited experience managing HIV/AIDS disease.

viii Guide for HIV/AIDS Clinical CareAbbreviationsfor Dosing TerminologyBID twice dailyBIW twice weeklyIM intramuscular (injection), intramuscularlyIV intravenous (injection), intravenouslyPO oral, orallyQ2H, Q4H, etc. every 2 hours, every 4 hours, etc.QAM every morningQH every hourQHS every night at bedtimeDosing AbbreviationsQID four times dailyQOD every other dayQPM every eveningTID three times dailyTIW three times weeklyImportant NoticeThe U.S. Department of Health and Human Services (HHS) HIV/AIDS Bureau iscommitted to providing accurate information on the care of HIV-infected persons. Itis important to be aware that management options and protocols change over time.Forthcoming HHS guidance on certain topics may differ from recommendationscontained in this Guide. Readers are encouraged to check for updates to treatmentguidelines at AIDS Info (aidsinfo.nih.gov) and for updates to drug information atDrugs@FDA (www.accessdata.fda.gov/scripts/cder/drugsatfda).

Supporting Patients in Care 1Robin Bidwell, RNC** Based on Sheffield and Casale, see “References.”BackgroundPatients infected with HIV face a complex array of medical, psychological, and social challenges.A strong provider-patient relationship, the assistance of a multidisciplinary care team, andfrequent office visits are key aspects of care. Through both the specific services they provide andtheir overall approach to patients, clinics can have a substantial impact on the quality of care forHIV-infected persons. For example, a patient-centered clinic environment in which educationand supportive interventions are emphasized will greatly enhance patients’ knowledge about HIVinfection. Improving patients’ skills in self-management will increase their participation in makinghealth care decisions and provide a stimulus for more active involvement in their own care.Special Challenges of Caringfor HIV-Infected PatientsProviders need to be mindful of several specialissues, including the following: Many medical, psychological, and socialchallenges confront persons living with HIV.The delivery of effective care usually requiresa strong provider-patient relationship, amultidisciplinary approach, and frequentoffice visits. The stigma associated with HIV places amajor psychosocial burden on patients.Stigma and discrimination must beaddressed through strong confidentialityprotections, emotional support, and culturalsensitivity. It is important to inform allpatients of their rights and responsibilities ina language or manner that is respectful andunderstandable. Underserved racial and ethnic groups areoverrepresented among people with HIV.Efforts to understand and acknowledgethe beliefs of patients from a varietyof cultural backgrounds are necessaryto establish trust between providersand patients. Cultural competency isimperative in the field of HIV care. Providers play a key role in the public healthsystem’s HIV prevention strategy. Diseasereporting, partner notification, and riskassessment are important aspects of care.Patients may see this as threatening andmay need education and emotional supportin order to participate in this process.Patients need to be informed of their rightsunder the Health Insurance Portabilityand Accountability Act (HIPAA) andunderstand the public health implicationsof HIV. Many patients have inaccurate informationabout HIV infection that can heighten theiranxiety, sabotage treatment adherence,and interfere with prevention behaviors.Patients need assurance that HIV is atreatable disease and that, with successfultreatment, they can experience a normal lifeexpectancy. They also need to hear explicitlythat HIV may be transmitted through sexualcontact, injection drug use and other bloodcontact, and perinatal exposure, and thatthey can take specific measures to preventtransmission to others. Many patients need the support that only apeer can provide. Peer educators should beavailable to help patients navigate difficulthealth care systems, medication regimens,and lifestyle changes.Section 1: The HIV Clinic:Providing Quality CareSupporting Patients in Care

Section 1: The HIV Clinic:Providing Quality Care2 Guide for HIV/AIDS Clinical Care HIV-infected patients need to have an activevoice in their health care. Patient advisorygroups can provide valuable programevaluation, which can be used to promotethe patient-centered focus of the health caresystem.These issues are discussed further in thesections that follow.Components of HIV Careand Ways to Enhance CareImportant Components of HIV CareA first step in ensuring that patients are“engaged in care” is the establishmentof systems that include mechanisms forcoordination and communication of care. Clinics must offer a nonjudgmental andsupportive environment, because of thesensitive nature of issues that must bediscussed. A multidisciplinary approach, utilizingthe special skills of nurses, pharmacists,nutritionists, social workers, case managers,patient navigators, and others is highlydesirable to help address patient needsregarding housing, medical insurance,emotional support, financial benefits, mentalhealth and substance abuse counseling, andlegal issues. Providers and other clinic staff membersshould be prepared to conduct appropriateinterventions and make timely referrals tocommunity resources and institutions. The primary provider should coordinate thevarious aspects of health care, with closecommunication among providers acrossdisciplines. Individual office visits should be longenough to allow time for thoroughevaluation. Providers must be able to see patients asfrequently as their medical and psychosocialneeds require, and clinic scheduling shouldbe flexible so that patients with acuteproblems can be seen quickly and newpatients can receive and access care in atimely manner. A range of medical resources, includingproviders with subspecialty and laboratoryexpertise, needs to be established. Colocating services within testing andcounseling sites or within HIV clinics is anexcellent way to enhance patient compliance(see chapter Clinic Management). Patient education is a vital aspect of carethat begins during the initial evaluation andcontinues throughout the course of care (seechapter Patient Education).Taking Steps to Enhance CareProviding comprehensive care for HIVinfected patients requires a patient-centeredfocus, a multidisciplinary team, and awillingness to spend time on buildingrelationships with patients. Providers shoulddo the following: With the help of case management agencies,counseling and testing centers, and patientcare navigators, provide quick and easyaccess to care to those newly diagnosed andentering into treatment. Front-end staff members need to beknowledgeable, compassionate andefficient with the initial patient contact inorder to establish a warm and welcomingenvironment of care for the new patient. Make available self-management educationto help patients identify problems, teachdecision making techniques, and supportpatients to take appropriate actions to makenecessary changes in their lives. Offer care in a patient-centered environmentthat allows the patient to actively participatein care decisions and provides patientspecific education. Encourage patients to learn all they canabout their condition. Give accurate information regardingprognosis and antiretroviral therapy.

Supporting Patients in Care Anticipate that significant time will berequired for patient education. Outline the range of clinic operations andstate the expectations for provider-patientcommunication. Outline how appointmentsare scheduled and how prescription refillrequests are managed. Arrange to see patients with acute problemsquickly. Establish a triage system to provideefficient service delivery. Ensure that there are open lines ofcommunication with all patients to receiveand answer questions, assess treatmenteffectiveness, and manage side effects. Provide safe and secure access for patientsto communicate with staff. Patient portalscan provide quick and direct access tononemergent information and can provideaccurate answers to questions that arisebetween visits.Helping Patients Cope withEmotional IssuesPatients coming to terms with HIV infectionoften experience a range of emotions,including anger, fear, shock, disbelief,sadness, and depression. Loss is a majorissue for patients with HIV because health,employment, income, relationships withfriends, lovers, and family, and hope all may bethreatened. Many patients feel overwhelmed,and even patients who seem to be adjustingreasonably well can find it difficult to keepall of the many appointments that may bescheduled as they initiate care. Providersneed to recognize that patients’ emotionalstates affect their ability to solve problems andattend to important medical or social issues.Providers can do the following: Assess each patient’s emotional state andthe availability of friends and family foremotional support. Some patients will needcounseling to help them decide whether to3disclose their diagnosis to friends, family, oremployers as well as support in dealing withHIV infection. Patients often feel hesitantabout seeking emotional and practicalsupport. Deliver important information in easilyunderstood terms and in small amounts.Reassess patient understanding of crucialinformation at subsequent visits, and repeatimportant information as necessary. Realizethat many visits may be required beforepatients are comfortable with their care andthe navigation of the health care system. Screen for anxiety, depression (includingsuicidal ideation), and substance use. Refer patients to community resources forcrisis counseling, support groups, and, ifappropriate, psychiatric treatment to helpthem achieve emotional stability. Assist patients in finding a case manager orpatient navigator who can help them learn tonavigate the health care system and reduceanxiety about keeping their lives in order. Assist patients in linking to social workservices to assist with enrollment intomedical insurance and to meet other socialservice needs, such as housing, food, childcare, and substance abuse treatment.Helping Patients Develop SelfManagement SkillsSelf-management support is defined bythe Institute of Medicine as the systematicprovision of education and supportiveinterventions by health care staff to increasepatients’ skills and confidence in managingtheir health problems, including regularassessment of progress and setbacks, goalsetting, and problem solving.It can be viewed as a portfolio of techniquesand tools to help patients choose healthybehaviors, and as a fundamental shift ofthe provider-patient relationship toward acollaborative partnership.Section 1: The HIV Clinic:Providing Quality Care Foster an atmosphere of nonjudgment, trust,and openness.

Section 1: The HIV Clinic:Providing Quality Care4 Guide for HIV/AIDS Clinical CareAfter patients have come to terms with theirHIV infection, they are ready to embarkupon the lifelong process of caring forthemselves. Patient self-management involvesadopting new health behaviors and requireschanges that will occur as a progression ofmotivational skills. Motivation is defined asthe “probability” that a person will enter into,continue, and adhere to a specific changestrategy. Patients will feel empowered as theygain the skills and confidence to be activeparticipants in their care.The following practices should be adopted tofoster patient self-management: Train staff at all levels on patient selfmanagement concepts and how toincorporate them into care. Create an atmosphere conducive to learningthese self-management skills, including butnot limited to the following areas: Problem solving Medication issues Working with the health care team Planning for the future Goal setting Dealing with difficult emotions Healthy eating Advance directives Sex, intimacy, and disclosure Adopt a team approach to health carewith the patient as the central team player(patient-centered care). Incorporate problem-solving skills into alleducation efforts. Allow the patient time to set small obtainablegoals as “first steps” in self-management. Realize that many appointments withmultiple members of the health care teammay be necessary before a patient has all thenecessary skills.Helping Patients Make PositiveChanges in Health Care BehaviorsRegardless of whether a patient is new to careor has been in care for many years, the burdenof a chronic disease is wearing. Positive changein behavior needs to be an ongoing focus ofpatient-centered care. After patients have selfmanagement skills, they still need help settingaction plans for their health care. The providerneeds to help patients adopt realistic actionplans by: Realizing that new health behaviors requiremotivation and occur as a progression oflearned skills Bolstering patients’ self-confidence byadopting action plans that: Are realistic Are something that patients find of value(i.e., something they want to do) Are reasonable (it is better to underestimate and exceed the goal than tooverestimate and fail) Are action-specific, withsmall, obtainable goalsPeer Educators and PatientAdvisory GroupsPatients need to be active participants inmaking decisions regarding their health care.Peer educators and patient advisory groups canhelp patients become more involved in theircare.In order to best support patients, it is helpfulto have peer educators available for themduring initial and subsequent visits. This helpsto decrease patient anxiety and promotes apatient-centered atmosphere. Providers needto realize that peer educators are HIV-infectedindividuals who: Provide a unique approachto client-centered care May attend clinical sessions with patientsand provide them with referrals for one-onone counseling and support

Supporting Patients in Care Work under the same confidentialityguidelines as all other staff membersAnother valuable tool for patient-centeredcare is the use of a patient advisory group(PAG). The PAG is the voice of the peoplethat the clinic serves. The HIV program willlisten to this group’s suggestions and use themto improve patient satisfaction and clinicfunctionality. The PAG’s role could involveidentifying clinic problems, recommendingchanges in the care delivery system, anddiscussing new treatment approaches. Asuccessful PAG does the following: Provides comprehensive, individualizedclient-based education to all active patients Encourages clients to actively participate intreatment decisions and to involve familymembers and others who comprise theirsupport system Designates members who facilitate meetings,promote upcoming meetings, coordinatespeakers, and provide feedback to clinic staffand management Allows members to serve as cofacilitators,choose topics of discussion, set meetingguidelines, and invite new members Fulfills requirements of grants and otherfunding streams to have enhanced patientinvolvementStigma and DiscriminationStigma is founded on fear and m

clinical training arm of the Ryan White HIV/ AIDS Program that is administered by the Health Resources and Services Administration (HRSA) and its HIV/AIDS Bureau (HAB). The AETC network conducts more than 14,000 training events each year with approximately 143,000 health care providers in attendance. The Guide for HIV/AIDS Clinical Care is a