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ADHERENCEADULTS ADHERENCE TOA Guide for Trainers Introduction 149 ADHERENCEADULTSCoast Province General Hospital MombasaMinistry of Health Kenya 149 Introduction ADHERENCEADULTS Tel 254 ID: 936453

149 adherence counseling patient adherence 149 patient counseling treatment adherenceadults 146 patients art hiv 150 medications effects side preparatory

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Introduction • ADHERENCEADULTS ADHERENCE TOA Guide for Trainers Introduction • ADHERENCEADULTSCoast Province General Hospital, Mombasa(Ministry of Health, Kenya) • Introduction ADHERENCEADULTS Tel: (254-20) 2713480Email: pcnairobi@popcouncil.orgWebsite: www.popcouncil.org/horizonsWomen, International HIV/AIDS Alliance, Program for Appropriate Technologyin Health, Tulane University, Family Health International and Johns Hopkins Uni-versity. Horizons is funded by the US Agency for International Development, un-tional board of trustees. Its New York headquarters supports a global network ofregional and country offi

ces. Horizons/Population Council, International Centre for Repro-herence to Antiretroviral Therapy in Adults: A Guide for Trainers. Nairobi:PopulationCouncil. Introduction • ADHERENCEADULTS Mombasa ART Project RPM PlusRational Pharmaceutical Manage- Introduction • ADHERENCEADULTS Dr Avina Sarna, Dr Samuel Kalibala, and Ms Susan Kaai from the Popula-vided support in Washington DC. Ms Leine Stuart, Senior Technical OfficerInternational and Ms Helena Walkowiak, Senior Program Associate, Centrement. Dr Khadija Shikely, Dr David Mwangi, Dr William Mbaya, Dr KishorMandaliya, Dr Vinesh Vaghela, Dr Mufidah Shabiby and Dr Fran

cis OtienoWe are grateful to the management and staff of the Coast Province GeneralWe would like to acknowledge the contribution of our team of dedicatedAnn Mwangemi, Mary Namuyu, Mariam Amran and Margaret Magina. WeNzumbu from the pharmacy for their support on this project. We would like 3TCLamivudineARTAntiretroviral TherapyAZTZidovudineBomu ClinicNGO ClinicCHWCommunity Health WorkerCCCComprehensive Care ClinicCNSCentral Nervous SystemCPGHCoast Province General Hospitald4TZerit, StavudineDAARTDirectly Administered Anti-Retroviral TherapyDDIDidanosineDOTSDirectly Observed Therapy—short courseEFVEfavirenzFBOFaith Based Organ

izationHAARTHighly Active Anti-Retroviral TherapyHWHealth WorkerMEMSMedication Events Monitoring SystemNVPNevirapinePRDHPort Reitz District HospitalTB DOTSTB Directly Observed Therapy—short course Introduction • ADHERENCEADULTS List of AbbreviationsIntroductionMODULE 1: Basic Information on Adherence1Activity 1: Brainstorming4Activity 2: Presentation5Activity 3: Group Work13Activity 4: Review13Additional Reading Material141. HIV Infection and Antiretroviral Treatment141.1 What are the Challenges of Taking HAART?141.2 What is the Goal of HAART Therapy?151.3 Viral Resistance152. What is Adherence?162.1 How much Adherence

is required for optimal results?162.2 How common is Non-Adherence?172.3 How does Adherence to HAART compare with Adherenceto other medications?172.4 What are the forms of Non-Adherence?172.5 What are the consequences of Non-Adherence?182.6 What are the factors that Influence Adherence?182.7 How Can Adherence be Assessed and Monitored?202.8 Strategies and Tools to Enhance Adherence22MODULE 2: Patient Preparation for Adherence25Activity 1: Brainstorming28Activity 2: Presentation and Discussion30Activity 3: Review: Q & A37Additional Reading Material381. Patient Assessment382. Patient Preparation for Treatment382.1 Establishing Trus

t Between Patient and Provider392.2 Introduction to the Treatment and Adherence Program39 • Introduction ADHERENCEADULTS • Contents2.3 Assessing the patient’s health status402.4 What Patients Can Expect to See with Treatment432.5 The Importance of Adherence442.6 Prior Use of Antiretrovirals442.7 Patient’s Beliefs and Attitudes442.8 Social Support and Socio-Economic Situation442.9 Establishing a Treatment Plan452.10 Discussing the Proposed Adherence Strategy463. Identifying Barriers to Adherence464. Number of Preparatory Visits515. The Multidisciplinary Adherence Team515.1 Role of the Physician525.2 Role of t

he Nurse Counselor/Nurse Case Manager525.3 Role of the Pharmacist52MODULE 3: Preparatory Adherence Counseling53Activity 1: Brainstorming56Activity 2: Presentation57Activity 3: Group Activity: Case Studies63Activity 4: Review68Additional Reading Material691. Adherence Counseling: Its Nature and Purpose691.1 Attributes of a Good Adherence Counselor701.2 Effective Counseling Techniques702. Pre-treatment Adherence Counseling72for adherence732.2 Preparatory Counseling Session 2: Continued Treatmentand Adherence Counseling80and Initiation of ART83MODULE 4: Ongoing Adherence Counseling85Activity 1: Presentation and Discussion87Activity

2: Group Activity: Role Play98Activity 3: Review. Q & A100Additional Reading Material1011. Follow-up Counseling and Ongoing Support1011.1 Follow-Up Counseling Session1011.2 Ongoing Support104Information Resources115Glossary117 Introduction • ADHERENCEADULTS Introductionfor HIV infection. With the advent of newer antiretrovirals, treatment hasActive Antiretroviral Therapy (HAART). Treatment with a cocktail of threeOne of the foremost concerns of ARV programs is the ability of people liv-long term. In order to achieve the goal of antiretroviral therapy (ART), unde-Adherence is defined as a patient’s ability to follow a t

reatment plan, takeface significant challenges with respect to adherence to ART. Once initiated,HAART is a life-long treatment that consists of multiple medications to becations also have side effects, some of which may be temporary while othersARV programs are being initiated in several developing countries. TheMombasa ART project was initiated in 2003 and was designed to serve as alearning site for other programs starting up ART service delivery in publicThis Adherence Training Manual was developed using best practices fromthe New York State Medical Services, experiences from the WhitmanWalkman Clinic in Washington DC and the I

NOVA Juniper program in • Introduction ADHERENCEADULTSVirginia, training programs from the University of Florida and the WHOThe Adherence Training Manual has been designed for health workers in-cluding physicians, clinical officers and adherence nurse counselors in ARVa part of a comprehensive ART training program. The manual is designeding on ARV medications. In Mombasa, adherence training was introducedon Day Two of a 5-day comprehensive ART training with a module coveredModule 1 provides a background on adherence to ART and is relevant for allhealth workers involved in ART service delivery. Modules 2, 3 and 4 pro-vide de

tailed adherence management of a patient on ART designed for ad-The methodology, the materials required, the expected duration and the hand-outs are given in the margin at the beginning of each exercise. Handouts forthe training use actual patient literacy materials (FHI/IMPACT 2003), coun-in the Mombasa ART program.tion is required. Trainers need to prepare by going through the additionalat the beginning of each day. Encouraging interactive sessions with discus-sion will make the program more effective.The manual uses different techniques in this module: brainstorming, smallgroup discussion, Power Point presentation, case studie

s and role-play.opportunity for a large number of participants to share their views. Power Introduction • ADHERENCEADULTSdiscuss and understand the issues in a practical way. Role-play providescounselors at Coast Province General Hospital and staff at the scale-up sites:manual has also been adapted by NASCOP, Kenya.oped in Africa. As the ART program grows and patients have been on ARTundergo revision and updating. We look forward to learning about your ex-periences and feedback on this training manual. Your suggestions and feed-For additional information or sending feedback/suggestions, contact AvinaSarna at asarna@pcindia.

org. MODULE 1Basic Information on • 1: Basic Information on Adherence ADHERENCEADULTS 1: Basic Information on Adherence • ADHERENCEADULTSTo provide trainees with a basic understanding of the challenges of HAART1.Brainstorming: Discussion on adherence and challenges ofHAART.2.Presentation: Goals of therapy, levels of adherence required,3.Group activity: Discuss strategies to promote adherence.4.Review.Total 2 h•Additional reading material on Module 1: ‘Adherence to Antiretroviral•Power point presentation for Session 1 • 1: Basic Information on Adherence ADHERENCEADULTS Activity 1: Brainstorminga

dherence to HAART therapy. Most trainees will have already participatedinitial brainstorming exercise, where information about HAART anddiseases in the hospital. Discussion will include challenges of HAART andlater.Flip charts 30 min. 1: Basic Information on Adherence • ADHERENCEADULTS Activity 2: Presentationadherence: the goals of therapy, levels of adherence required, consequencesthe issues presented when reading the material later. Copies of presentation 45 min. 2 At the end of this session the participantsshould have a basic understanding of:Challenges of adherence to HAARTHow adherence can be monitoredHow adherence c

an be enhanced • 1: Basic Information on Adherence ADHERENCEADULTS 45 Does not cure HIV infectionTo be taken regularly life longHigh pill burdenSide effects: short and long term: the act or quality of sticking to something,steady devotion; the act of adheringAcceptance of an active role in one’s ownhealth care: the act of conforming, yielding or acquiescingprovider and clientGoal of HAART = maximal and durable viralsuppression (undetectable levels)Successful HIV therapy requires adher�ence 95%Failure rates increase sharply as adherence 1: Basic Information on Adherence • ADHERENCEADULTS 86 203040506080%

virological failure Adherence 80% Adherence 80-94.9% Adheren�ce 95% Incomplete viral suppressionContinued destruction of theimmune system – CD4 cell countsDisease progressionEmergence of resistant viral strainsLimited future treatment optionsHigher costs to the individual and ARV program(Patterson et al 2000)Missing one dose of a given drugMissing multiple doses of one or more prescribedMissing whole days of treatmentNot observing the intervals between doses • 1: Basic Information on Adherence ADHERENCEADULTS More than 10% of patients report missingone or more doses on any given dayMore than 33% report missin

g doses in pastProviders cannot easily accurately guesswhether a given patient will be adherentor not Self reports Pill counts Pharmacy records Biological markers Electronic devicesMeasuring drug levels 1: Basic Information on Adherence • ADHERENCEADULTS 13 Accuracy of self-report can bemaximized by:Approaching the client in a matter of factand non-judgmental way!Asking about the most recent daysUsing prompts to help recallVarious periods of recall - 1, 3, 4, 7, 30Self-report agrees well with actualmedication intake and viral loadTends to overestimateEasiest to do in a clinic settingProviders count remaining pills during

clinic visitProblemsPatients can dump pills prior to visitPromotes a sense of distrust between patientand providerUnannounced pill countsCan be more reliableFeasibility? • 1: Basic Information on Adherence ADHERENCEADULTS Pharmacists keep record of medications dispensedCan inform the doctor about lapses in patientsrefilling prescriptionsProblems:This is not a measure of ingestion of medicationsRequires patients to always use the sameDecreasing viral load implies good adherenceIn some patients viral load may remain higheven with good adherenceViral resistanceTreatment failurePoor absorption of drugElectronic devices –

MEMSMeasures opening of bottlesAllows for multiple measuresCorrelates well with viral load outcomesTraining neededMeasuring drug levelsDrug levels in blood have short circulating times 1: Basic Information on Adherence • ADHERENCEADULTS HIV disease, CD4 countse, buddies, fly support (summary of methods)Pill boxesBuddy system (peer, friend, family)Modified DOT/DAARTIncentives (food, transport, etc.)Electronic devices (pagers, alarms, beepers, etc.)Levels change over timeInfluenced by multiple factors, no factorRequires a combination of promotion strategiesRequires an integrated multidisciplinaryteam effort • 1: Basic

Information on Adherence ADHERENCEADULTS • Same message from all! Message forthe patientSocial Worker Nurse 1: Basic Information on Adherence • ADHERENCEADULTS Activity 3: Group Work a.Counsellingb.Pillboxesc.Electronic devicesd.Telephone reminderse.Medication diariesf.‘Buddy’ systemg.Pill chartsh.Directly Observed Therapy (DOT)i.IncentivesReview discussion of the day. Provide additional reading material. Ask twovolunteers to sum up the main points for the day. Allow trainees to ask 30 min. 15 min. • 1: Basic Information on Adherence ADHERENCEADULTS for HIV infection. With the availability of newer a

ntiretrovirals, treatmentActive Antiretroviral Therapy (HAART). Treatment with a cocktail of threeHAART consists of three or more antiretroviral medications to be taken inthroughout the day, especially with protease inhibitor containing regimens. is a major challenge.fluid restrictionsFurthermore, HAART can often lead to adverse events that may be temporaryneuropathy, lipoatrophy/lipodystrophy, metabolic dysfunction etc. Side effectsEven when the virus becomes undetectable in the blood with successful ART,sanctuary sites. The virus emerges when ART fails or is stopped. As the HIV infection canbe managed as achronic disease,but no

t cured. 1: Basic Information on Adherence • ADHERENCEADULTS regularly, long-term, for the rest of the patient’s life. HIV infection cantherefore be managed but not cured.The goal of HAART is to achieve maximal and durable suppression ofvirus replicationimmune suppression and slows disease progression. Success with HAARTimprovement in patients receiving HAART. As viral load assays arefor a large portion of treatment failures.cross-resistancethe patient cannot use other NNRTI medications such as Delavirdineresistant strains of the virusfirst time with HIV, who have never taken ARVs, are already resistant torestricted d

ue to high costs and limited availability. It becomes all the moreavoid the emergence of resistance. • 1: Basic Information on Adherence ADHERENCEADULTSa more collaborative process between the patient and provider. The patientHow is it different from ‘Compliance’? The dictionary defines compliance2.1How much Adherence is required forThe goal of HAART (Highly Active Antiretroviral Therapy) is to suppressobtain full benefits of HAART: maximal and durable suppression of viraleffect. The study showed that 22% patients with adherence of greater thanFig. 1.1: Virological failure rates and adherence to ART (Patterson et

al., 2000) 3040607090% virological failure Adherence Adherence 80-94.9% Adhere�nce 95% 1: Basic Information on Adherence • ADHERENCEADULTS Virological failure was defined as detectable viral loads (Paterson et al., 2000).twice a day. A patient should take 60 pills over one month (30 days). ToUnfortunately, non-adherence is common among individuals treated withHAART. Several studies have shown varying levels of adherence: more thanday, and more than 33% report missing doses in the past two to four weeksARV therapy ranged from 50 to 70 percent among patients in the US.2.3How does Adherence to HAART compareadequate

to achieve treatment goals. In the case of ART, near perfect adherence2.4What are the forms of Non-Adherence? • 1: Basic Information on Adherence ADHERENCEADULTS2.5What are the consequences of Non-Adherence?As has been mentioned earlier, very high levels of adherence (near perfectadherence) are required to achieve the full benefits of HAART. Non-adherenceNon-adherence is also an important reason for the emergence of viral2.6What are the factors that Influence Adherence?such as gender, ethnicity, age, employment, income, education and literacy;support, social stability, depression and other psychiatric illnesses.behaviour,

although some studies have found that male sex, white ethnicity, Adherence Patient–ProviderRelationship DiseaseCharacteristics TreatmentRegimen Clinical Setting Patient variables: Socio-demographics, psychosocialfactors 1: Basic Information on Adherence • ADHERENCEADULTSA patient’s knowledge of his medication regimen and a patient’sresistance to medication also predict better adherence. A patient’s belief andconfidence in therapy and his/her self-efficacy (confidence in oneself to beHAART consists of a complex regimen that can include up to 20 pills a day,instructions. These are often difficult to follo

w for patients and contribute toAntiretroviral medications often have side effects, some of which arepermanent or longer lasting: peripheral neuropathy, physical changes in bodyappearance, lipoatrophy/lipodystrophy, metabolic changes. Studies haveshown that when patients experience side-effects, they tend to stop treatmentor take it irregularly.motivating factor for adherence to HAART. Trust and confidence in providersAlthough existing data is limited, aspects of the clinical setting may beassociated with improved adherence. A friendly, supportive and non- • 1: Basic Information on Adherence ADHERENCEADULTS 2.7How Can Adhe

rence be Assessed and Monitored?adherence accurately. There is Patients are asked to report their own adherence in a self-report. Differentperiods of recall may be used—four-day, one-week, one-month or most-recentjudgmental manner. Accuracy of the self-report can be maximized by (i)approaching the patient in a matter of fact and non-judgmental way, (ii) asking Fig. 1.3: Left: MEM System; Right: MEMS Bottle 1: Basic Information on Adherence • ADHERENCEADULTSThe Medication Events Monitoring System records the date and time of eachmedication intake. There are, however, some disadvantages associated within its use; (iii)

MEMS fails to work if patients leave the cap off or lose thefor only one of the prescribed medications; and (v) theuse of MEMS also prior to scheduled visits leading to an overestimation of adherence.stigma in the community. Pill counting may also hinder the development ofa trusting relationship between the patient and provider.treatment. An effective record keeping system is essential for pharmacy refillSince the goal of HAART therapy is to lower the plasma viral load, monitoringviral load can be used as an indicator of effectiveness of treatment, and therebyof medication intake. In some patients, however, viral loads may remain

high even though patients take all their medications regularly. This could be • 1: Basic Information on Adherence ADHERENCEADULTSpoor absorption of the drug. Viral load monitoring is very expensive andSeveral different strategies have been used to enhance adherence singly or inmedications and side effects. Counseling helps the patient to set goals, todevelop positive beliefs and perceptions and to increase self-efficacy. InAdherence tools are helpful for many patients. Several different types oftools are in use, as listed below.and each dose within the day. This makes it easy for patients to take dosescorrectly. Pillboxes

with electronic reminders are also available. Someto fill the pillboxes correctly. 1: Basic Information on Adherence • ADHERENCEADULTS to that remind patients to take medications on time. that are linked to the internet are used to send messages to patients.related issues. These tools may not be practical in developing countrysettings.Telephone reminders are being tried out in some studies on adherence. Therereminder services are also being used.records of side effects or other problems patients may experience. This is a Fig. 1.4: Ezy Dose Pill Box (1 week, 4 daily doses) • 1: Basic Information on Adherence ADHERE

NCEADULTSdosage for each medication and are used by the nurse or health providerduringhelping patients organize their treatment taking.the supervision of adherence staff. In TB DOTS programs health workersof medication intake. In the case of ART, it is not practical to observe alldoses as most HAART regimens have multiple doses and treatment is life- or Modified DOT can be done at healthcentres, in community-based organizations or even at a patient’s home. Inthe management of HIV infection, a modified DOT strategy, through frequentof antiretroviral therapy when patients have short term side-effects; and (iv)events etc. to i

ncrease effectiveness of ART intake. approach: physicians, nurses, counselors andpharmacists. MODULE 2Patient Preparation for • 2: Patient Preparation for Adherence ADHERENCEADULTS 2: Patient Preparation for Adherence • ADHERENCEADULTS To provide trainees with an understanding ofPatient preparation for starting antiretroviral therapy.1.Brainstorming: Discuss barriers to adherence.2.Presentation and discussion on patient assessment,barriers and patient preparation for antiretroviral therapy.3.Review.Total 1 hr 45 min. • 2: Patient Preparation for Adherence ADHERENCEADULTS preparation prior to initiating antire

troviral therapy. The trainer will build onrole of the different health providers. The trainer will ask participants to listIn case the group is too large, this activity may be done in two groups. Each•Flip charts•Handout on 30 min.List of Barriers to Adherence and Ways to Address Them1.Communication difficulties (language, cultural differences, patient attitudes regarding treatmentefficacy, lack of comprehension about treatment plan or regimen)i.Discuss in an open and non-judgmental wayii.Provide patients with scientific basis for treatmentiii.Repeat and paraphraseiv.Use counselors who speak the same language and under

stand thei.Verbal repetition of adherence message, treatment plan and regimenii.Use patient literacy materialsiii.Use dummy pills for demonstrationiv.Review information with patientInadequate knowledge or awareness about HIV diseasei.Provide patients with scientific information about HIV diseaseii.Review information with patientiii.Use examples 2: Patient Preparation for Adherence • ADHERENCEADULTS Module 2 Inform patient and bring change in attitudes and understanding of effectiveness ofmedicationsi.Establish contact with PLHA support groupsii.Link with community health workers and home-based care servicesiii.Link with ch

aritable institutions, Faith Based OrganisationsDiscomfort with disclosure of HIV statusi.Counseling patient to support disclosureii.Identify other support persons like friends or peers if patient unable to disclose (lack of income, housing and food; lack of support for childcare)i.Establish contact with PLHA support groupsii.Link with community health workers and home-based care servicesiii.Link with charitable institutions, church programsi.Counseling—emphasize link between alcohol, ARV medications and liver damageii.Family supportiii.Peer group support programs, church programsiv.Medical consultation—de-addiction pro

gramsDepression and other psychiatric problemsNegative or judgmental attitude of providersTraining of providers11.System barriers (drug stock-out, shortage of staff, health facility closed) • 2: Patient Preparation for Adherence ADHERENCEADULTS •Power Point•Interactive sessionHandout: Copies of 60 min.Discussion can be interwoven with the presentation to form an interactivedisease, perceptions about disease severity, commitment to take treatment,self-efficacy, barriers etc. Some of these issues have been covered in Module 2: Patient Preparation for Adherence • ADHERENCEADULTS Module 2 2 Initial assessment

of the patientBarriers to adherencePreparation of the patientIs the patient ready to make a commitmentto a life-long treatment?What are some of the problems the patient may havethat will prevent him/her taking medicationsregularly?General physical healthPast illnesses – OIs, hospitalizationsMental health – depression, dementiaOther medications – prior use of ART,experience with adherence • 2: Patient Preparation for Adherence ADHERENCEADULTS Effectiveness of HAARTCommitment to treatmentPerceptions about seriousness of his/her illnessContinuing preventive and protective behaviourLives with family/lives aloneS

upport from family and friendsSupport from outside the family – NGOs,church, workplace etc.Disclosure of his/her HIV statusEmployment and incomeMigrant status and home district 2: Patient Preparation for Adherence • ADHERENCEADULTS Module 2 Communication difficultiesLiteracy levelsInadequate knowledge or awareness ofInadequate understanding of treatmentDiscomfort with disclosure of HIV statusPatient attitudes and beliefs in treatmentDepression and other psychiatric problemsAlcohol and/or active drug use • 2: Patient Preparation for Adherence ADHERENCEADULTS Difficult life conditionsNegative or judgmental attitu

de of healthprovidersSystem barriersRequires 2-3 (even 4) sessions with the patientprior to starting HAARTSets the ground for better adherence long-termOngoing process with a two-way exchangebetween patient and provider 2: Patient Preparation for Adherence • ADHERENCEADULTS Module 2 15 Establishing trust between patient and providerIntroduction to the treatment and adherenceprogramPatient’s present health statusPast experience with ART and adherenceExpected changes in physical well being andbiological markers with ARTImportance of adherencePatient’s living conditionsPatient’s daily routineUnderstanding of pa

tient’s beliefs and attitudes –HIV disease, ART, preventive behaviourIdentification of potential barriers & ways toaddress them • 2: Patient Preparation for Adherence ADHERENCEADULTS Making a treatment planTreatment regimenFollow-up planIntegrating treatment into patient’s dailyDiscussion about proposed adherence strategyPatient should demonstrate an understanding of his/her disease and health statusPatient should demonstrate an understanding of his/her treatment regimen and follow-up planPatient should appear to make a commitment towardadhering to treatmentPotential barriers should have been identified anda

ddressed to the best possible extentPatient should appear to be ready to start HAART MessageSocial Worker Nurse 2: Patient Preparation for Adherence • ADHERENCEADULTS Module 2 Review discussion of the day. Ask two volunteers to sum up the main pointsfor the day. Allow trainees to ask questions, seek clarifications or additionalVolunteer DiscussionFlip Chart, Additional 15 min. • 2: Patient Preparation for Adherence ADHERENCEADULTS 1.PATIENT ASSESSMENTHAART is a complex treatment with multiple medications that once startedto treatment begins before antiretroviral therapy is started. Treatment programsto learn as much

as possible about the patient’s health and psychosocialpatient’s health through a detailed medical history.prior use of antiretrovirals and other medications.patient’s beliefs and attitudes about HIV andsources of social support of the patient.barriers to adherence2.PATIENT PREPARATION FOR TREATMENTfour visits before initiating ARV therapy.HAART, (ii) to think through the impact treatment will have on their lives,andPatientpreparation 2: Patient Preparation for Adherence • ADHERENCEADULTS and develop the self-efficacy to make the change. Based on this theory, thechanging behaviour,Action: the person works a

t changing behaviour,2.1Establishing Trust Between Patient and Providerprocess that is strengthened over time. An assurance of confidentiality, a2.2Introduction to the Treatment and AdherenceA discussion about the ARV program, health facility, medication availability,treatment if taken regularly. Patients should be given a positive message. • 2: Patient Preparation for Adherence ADHERENCEADULTSpatient’s health through a detailed medical history. Thistaking medications regularly.stage for the discussion on the importance of taking medications regularly. Aseverity of their illness and the need to take medications correc

tly. It istreatment if taken regularly and correctly.laboratory staging to determine disease stage (Tables 1 and 2). The modifiedand 1.7 years (Table 3). Even in cases of patients with advanced disease,care must be taken not to discourage them with predications of life-When started in time, HAART delays disease progress and prevents death. Patients shouldbe given aPatients whohave adheredwell to theirtreatment arein good healthmore than 2: Patient Preparation for Adherence • ADHERENCEADULTS Module 2 Stage 1Asymptomatic, peripheral general lymphadenopathy, acute HIVStage 2Loss of weight Stage 3&#x 10%;&#x, mi;&#xnor ;&#xmuc

o; uta;&#xneou;&#xs le;&#xsion;&#xs, z;&#xoste;&#xr wi;&#xthin;&#x 10%;&#x, mi;&#xnor ;&#xmuco; uta;&#xneou;&#xs le;&#xsion;&#xs, z;&#xoste;&#xr wi;&#xthin;Loss of weight 10%, chronic diarrhea 1 month, thrush, oralhairy leukoplakia, TB within past 1 year, severe bacterialinfectionsStage 4Wasting syndrome, any ADI (AIDS Defining Illness) 1990 65:221CD 4LymphocytesWHO 1WHO 2WHO 3WHO 4 � 500� 2000IIIIIV200–5001000–2000IIIIIIIIVIIIIIIIVIV 1992 6:719Stage I to IV9.5 yearsStage II to IV6.5 yearsStage III to IV2.0 yearsStage I11.2 yearsStage II8.2 yearsStage III3.7 yearsStage IV1.7 years 1995 8:474 •

; 2: Patient Preparation for Adherence ADHERENCEADULTS •CD4 cells counts are a measure of the patient’s immune status,•HIV attacks CD4 lymphocytes,•lower CD4 counts signify advanced HIV disease,•CD4 cell counts increase with treatment.cellcount and monitor how it changes with treatment. Patients who havein the function of the immune system to fight off infections. They arethus lowering the body’s immunity against infections. Measuring theherpes zoster, fungal infections, cancerous skin lesions etc.).Treatment with antiretroviral medications reduces the number of virusin the body and thereby decrease

s the destruction of CD4 cells. Withon how severely the patient’s immune system was affected at start of are eligible to 2: Patient Preparation for Adherence • ADHERENCEADULTS Module 2 •viral load measures the amount of HIV in the blood,•higher viral load levels signify increased risk of transmitting infection,•treatment with ART results in viral load reduction,•patients start to feel better when viral load decreases.Viral load tests measure the amount of HIV virus in the bloodstream.activity, replicating (producing copies of itself) and further infectingViral load tests when available (they are ve

ry expensive and requirecocktail) should result in a reduction in viral load. Viral load should /The rate of viral load decline is affected by the baseline CD4 cell count,Viral loads tend to be the highest during initial acute HIV infection • 2: Patient Preparation for Adherence ADHERENCEADULTSuse of antiretroviral medications would need added support andcounseling.to assess drug interactions and side effects.Learn about the patient’s beliefs and attitudes about HIV and treatment.regularly, tend to adhere better to treatment.organizations or workplace programs etc. 2: Patient Preparation for Adherence • ADHEREN

CEADULTS of the patient: housing,It is important to discuss the patient’s daily routine (employment, work timing,patient’s daily routine and lifestyle helps to better integrate medication intakeTreatment reminder cuesthe patient’s daily routine. Treatment reminder cues include tying medicationi.A discussion about the treatment regimen should cover the followingii.A discussion about potential side effects and ways to manage them;iii.A discussion on the plan for routine follow-up should be included.in case of missed appointments. Telephone numbers and addressesaway. • 2: Patient Preparation for Adherence ADHE

RENCEADULTS 2.10 Discussing the Proposed Adherence Strategy(tools such as checklists, pill diaries, pill boxes; modified DOT, buddy system3.IDENTIFYING BARRIERS TO ADHERENCEa.Communication problemsCommunication difficulties may arise from language and cultural differences.Communication difficulties could also arise when the patient’s attitudes andexpectations regarding HIV and treatment are different from those of thenegative attitudes. This may be seen among marginalized or stigmatized Discussion in an open and non-judgmental way,confidence and positive attitudes. Understanding cultural differences andproviding counseling i

n the patient’s dialect and language help to solve 2: Patient Preparation for Adherence • ADHERENCEADULTS Module 2 PILL DIARYPatient Name...................................Treatment Site.................................Patient ID........................................Observation Site.............................Month..............................................Year.................................................891011121314 PILL DIARYPatient Name...................................Treatment Site.................................Patient ID........................................Observation Site........................

.....Month..............................................Year.................................................Day of the1234567D4TMorning3TCMorningEFVNight Fig. 2.1: Pill Diary • 2: Patient Preparation for Adherence ADHERENCEADULTSb.Literacy levelsEfforts should be made to avoid uncomfortable situations where the patient’strust in the provider and self-efficacy in the patient.c.Inadequate knowledge or awareness about the diseasedo not have such an understanding. Patients who believe in the effectivenessDiscussion in an open and non-judgmental way,effectiveness of treatment.d.Unstable living conditions and lack of socia

l supportWorkers) may provide some psychosocial support and nursing care. Supportprograms run by faith based organizations, such as food donation programs, 2: Patient Preparation for Adherence • ADHERENCEADULTS e.Discomfort with disclosure of HIV statusf.Difficult life conditionsfor childcare as more urgent needs than taking medications properly.programs, PLHA support groups and the home-based care program may offerg.Alcohol and drug useadhering to treatment—forgetting to take medications on time or correctly.be provided scientific information on the link between alcohol, ARV drugbecome necessary to stop or change ARV

medications if liver damage occurs. • 2: Patient Preparation for Adherence ADHERENCEADULTSh.Depression and other psychiatric problemsPatients with depression and other psychiatric illness may have difficultiesfrom caring for themselves and taking medications regularly and correctly.Patients may suffer from residual confusion after an episode of meningitis orcare. Treatment with ARV in itself helps to resolve some conditions. AIDSdementia may not improve despite ART and these patients require additionalfrom the family, community health workers, and PLHA support groups wouldi.Negative or judgmental attitudes of providers: T

raining of providers will help to overcome thisbarrier. Regular staff meetings to discuss the follow-up of patients may helpproviders to understand the issues better.j.System barriersstaff being too busy etc.help by bringing these issues to the administration’s notice. 2: Patient Preparation for Adherence • ADHERENCEADULTS willing to delay initiation of therapy. In such situations, additional counselingsessions can be administered alongside initiation of therapy.HIV is a complex illness that has an impact on many aspects of an individual’s Adherencemessage AdherenceNurse Pharmacist CounselorSocial workerFamily /

Friend Family / Friends PhysicianFig. 2.2: Multidisciplinary Adherence Team • 2: Patient Preparation for Adherence ADHERENCEADULTS•Initiation of ART•Continuation of therapy•Treatment failure or non-response•Side effects/adverse events and appropriate response•Change of treatment regimen•Adherence to treatment•Prophylaxis therapy•Adherence counseling for patients•Adherence-related follow-up and data collection•Adherence strategy to be used•Liaising with different specialties involved in case management(e.g. TB services, dermatology, home based care).•Informing phys

ician of problem areas: side effects, adverse events5.3Role of the Pharmacist•Dispensing of medications•Treatment-related counseling•Adherence counseling at time of dispensing treatment•Checking out for side effects and adverse events•Pill counts at time of medication refill. MODULE 3Preparatory Adherence • 3: Preparatory Adherence Counseling ADHERENCEADULTS 3: Preparatory Adherence Counseling • ADHERENCEADULTSTo provide trainees with skills in the initial assessment of a patientTo provide trainees with skills in preparatory counseling for patients priorto initiating HAART1.Brainstorming on

adherence counseling—its nature andpurpose and on attributes of an effective counselor2.Presentation on the content of counseling during3.Case studies through group discussions4.Review or summaryTotal Time: 130–145 min.Effective counseling techniques handout • 3: Preparatory Adherence Counseling ADHERENCEADULTS will break up into 2–3 groups and come back for a plenary. The trainer willand purpose of adherence counseling, the attributes of an effective counselorand effective counseling techniques. The trainers will use lead questionsDiscuss the following techniques to make counseling more effective.Flip chart

s, handout 30 min. 3: Preparatory Adherence Counseling • ADHERENCEADULTS 40 min.Activity 2: Presentationthree adherence counseling sessions prior to initiating HAART and will coversteps required to prepare the patient for starting HAART.Content of the three preparatory counselingAssessment of patient readiness to starttreatment • 3: Preparatory Adherence Counseling ADHERENCEADULTS 53 Introduction to the treatment andadherence programExplain layout of clinic, laboratory, pharmacyIntroduce HWs involved in careExplain overall treatment and follow-up plan:3 counseling sessions prior to starting ARTMonthly follow-up wit

h physicianMonthly pharmacy refill & laboratoryinvestigations as required Discuss patient’s health statusOverall health and physical conditionDisease stage and past OIsCD4 counts and viral loadExpected changes in health and CD4 countswith regular ART�Importance of 95% adherenceConsequences of non-adherence 3: Preparatory Adherence Counseling • ADHERENCEADULTS 8 (contd)Past use of ARVs/Other medicationsPregnancy and family planningProtective and preventive behaviour Discuss Patient’s Living Conditions andSocial SupportEmployment and incomeDisclosure of HIV statusSocial supportDependants – other HIV

infected personsMigrant status and travelDaily routine Discuss treatment planTreatment regimenInstructions on food and fluid intake/restrictionsStorage of medicationsSide effects – do not overwhelm theFollow-up planPhysician check up and investigationsContact information – HW and patient • 3: Preparatory Adherence Counseling ADHERENCEADULTS DAART (Modified DOT)Treatment BuddyFamily involvementTools: Pill diary, treatment reminder cues etc. Discuss the proposed adherence strategy Identify barriers to adherenceIdentify potential barriers from earlierDiscuss ways to address barriersFix a date for the next appointme

nt 3: Preparatory Adherence Counseling • ADHERENCEADULTS Use an approach of continuing discussion andnot an evaluationRepeat information where necessaryRe-emphasize important issuesUse dummy pills to repeat instructionsReview and assess patient’s understanding ofhis/her HIV disease and health statusReview and assess patient’s understanding andrecall of treatment and follow-up planProvide information on side effectsExpected side effectsHow to manage themWhen to seek careHow to contact health worker • 3: Preparatory Adherence Counseling ADHERENCEADULTS Review proposed adherence strategyReview barriers and ho

w to address themFix a date for the next appointmentReview treatment regimen and follow plan in detail:Treatment regimenSide effects and how to manage themFollow-up planAdherence strategyContact systemPatient goals for adherence 3: Preparatory Adherence Counseling • ADHERENCEADULTS SmallgroupdiscussionFlip chart, checklists,patient literacy 40 min.min. (with role play) Assess patient treatment readinessDoes the patient demonstrate an understanding ofhis HIV disease and health status?Does the patient demonstrate an understanding ofhis treatment regimen and follow-up?Does the patient appear to make a commitment totake treatm

ent long term?Does the patient have a major barrier to adherence?Has that been addressed?Is he ready to start HAART?Discuss patient readiness with physicianRefer patient to the pharmacy to receive ARVsSet appointment for next visit • 3: Preparatory Adherence Counseling ADHERENCEADULTS A 45-year-old man has been sent to you for counseling beforestarting HAART. This is his first preparatory session. He has some informationon ARVs received from a radio program. He has done primary school, lives A 35-year-old woman has come for the third preparatorycounseling visit. She is eager to start her ARVs. She has studied up to pri

marythe use of dummy pills, a pill diary, reminder ‘cues’ and literacy material. A 28-year old woman has come for her second preparatoryCD4 count of 35 cells and has had PCP, herpes zoster and meningitis in thelast year. She is a widow, living in Bangladesh slum with two friends whoalso work as sex workers. She has completed high school. She has beenlosing weight steadily, feels weak and finds it difficult to concentrate. Shefeeling unwell. Her friends have been supporting her. She is keen on startingART. She is planning to visit her family in upcountry next month.Use of adherence enhancement tools—dummy pills, a

pill diary, reminder 3: Preparatory Adherence Counseling • ADHERENCEADULTSClient’s name ................................................................................................................. Medical history Knowledge of HIV/AIDS Prior use of ART Determine social support Disclosure—have they disclosed to anyone? Alcohol/drug use Mental state Review health status Opportunistic infections CD4/viral load Review living conditions and employment Describe the treatment program and importance of adherence Drug regimen—name/frequency/storage/dietary instructions/not to share pills What ART does—suppr

esses virus/improves immunity/less OIs/not a cure Side effects and what to do Importance of adherence and consequences of non-adherence Discuss adherence promotion strategies Buddy reminder—discuss role of support person Pill diary Other reminder cues Identify barriers to adherenceYesNo Poor communication Low literacy Inadequate understanding about HIV/AIDS Lack of social support Failure to disclose status Alcohol and drug use Mental state Schedule next counseling session and complete appointment card • 3: Preparatory Adherence Counseling ADHERENCEADULTSClient’s name ..............................................

...................................................................Review client’s understanding of HIV/AIDS What is HIV and AIDS? Opportunistic infections CD4/viral load Effect of treatment Review the treatment program and importance of adherence Drug regimen Dummy pill demonstration What ART does—improves immunity/less OIs/ART not a cure Need for continued prevention Side effects and what to do Importance of adherence and consequences of non-adherence Review proposed adherence promotion strategies Buddy reminder—discuss role of support person Pill diary Other reminder cues—discuss DAART Review barriers to ad

herence and progress made Poor communication Low literacy Inadequate understanding about HIV/AIDS Lack of social support Failure to disclose status Alcohol and drug use Mental state Take client’s address and establish contact system with treatment centre Schedule next counseling session and complete appointment card 3: Preparatory Adherence Counseling • ADHERENCEADULTSClient’s name .................................................................................................................Assess client’s understanding of disease and readiness to start HIV disease Opportunistic infections CD4/viral load E

ffect of treatment Commitment to adherence Review the treatment program and importance of adherence Drug regimen Dummy pill demonstration What ART does—improves immunity/less OIs/ART not a cure Need for continued prevention—condom use Side effects and what to do Link between adherence and successful outcome Review proposed adherence promotion strategies Buddy reminder—discuss role of support person Pill diary Other reminder cues—discuss DAART Fill ART register, schedule next appointment and complete appointment card Refer to Pharmacy • 3: Preparatory Adherence Counseling ADHERENCEADULTS 1.Have I determi

ned, in collaboration with the patient, that s/he is ready to2.Have I prescribed the simplest regimen?3.Have I explained to the patient details about dosing of medications? Have4.Is the dosing schedule compatible with the patient’s lifestyle?5.Have I reviewed potential or common side-effects and considered6.Did I ask the patient to repeat the medication names, dosing times and7.Does the patient know how to contact the health-care team in case of8.Does the patient know where and when to collect his medications?9.Have I fixed the next appointment?Promoting Adherence to HIV ART.AIDS Institute, New York State Department of Healt

hReview the day’s discussion. Ask two volunteers to come up and presentmain points for the day. Allow trainees to ask questions, seek clarificationsVolunteer DiscussionFlip Chart, Additional 15 min. 3: Preparatory Adherence Counseling • ADHERENCEADULTS1.ADHERENCE COUNSELING: ITS NATURE AND PURPOSEinvolving highly personal and intimate matters and behaviour. A counselor’semotional detachment is the key in assessing a client’s case and providingunbiased information on HIV/AIDS to the client. Additionally, counseling ison ART. At this time, as scientific research stands, the virus cannot beto treatment changes

over time and patients need support at different periodsa counselor and client that is based on an understanding of the client’s lifeHelp clients develop good treatment taking behaviour. • 3: Preparatory Adherence Counseling ADHERENCEADULTS1.1Attributes of a Good Adherence Counselorpatients on ART. Adherence counselors need to have:1.2Effective Counseling Techniquesto form a trusting and helping relationship with the patient. Counselors alsoneed to have an in-depth understanding of ART (medications used, sideeffects, viral resistance, adverse events etc.). Effective communication is thecounselor’s principal tool

. An ability to understand the client’s life situation(psychosocial, socio-economic, support systems, treatment seeking behaviour,is willing and has disclosed his/her status to the family.Some effective counseling techniques are described below.a.Active attending or listeningPaying attention to the client’s narrative helps in enhancing the client’s self-b.Reflection of feelingThe counselor must recognize feelings such as anger, frustration, and sadness 3: Preparatory Adherence Counseling • ADHERENCEADULTSHIV infection. These feelings further influence the patient’s ability to makeof ART.c.Questioningd.P

araphrasingrepeats what they have said in different words; for example, “You seem to bethe matter.e.Interpretationor bring it out more clearly. The counselor can emphasize the important points.For example, “Of all the things you talked about today, it seems to me thatf.RepeatingART is a complicated treatment. Preparation of patients prior to initiatingirregularly, monitoring of treatment and other drugs used for prophylaxisg.Summarizing • 3: Preparatory Adherence Counseling ADHERENCEADULTSthe patient to organize the information and internalize it.h.Respectingpatient’s views, beliefs, cultural context, and bu

ild on them.i.Structuring or prioritizing and fixing goalslong-term. Medications have to be taken regularly, at fixed intervals with2.PRE-TREATMENT ADHERENCE COUNSELINGabout ART, (ii) preparing the patient to start treatment, (iii) initiating treatment,The preparatory phase prior to initiating ART requires at least two to threemonitoring ART can be done during these preparatory visits.Preparatory Counseling Session 1:Preparatory Counseling Session 2:Preparatory Counseling Session 3:readiness and initiation of ART 3: Preparatory Adherence Counseling • ADHERENCEADULTS2.1Preparatory Counseling Session 1: in preparing the grou

nd forassurance of confidentiality, a non-judgmental attitude, mutual respect andpatient’s health through a detailed medical history.prior use of antiretrovirals and other medications.patient’s beliefs and attitudes about HIV andsources of social support of the patient.barriers to adherencepharmacy.Three counseling sessions prior to starting ART.After starting ART the first two follow-up visits to be every two weeksmonths. The doctor will inform the patient about requiredinvestigations. • 3: Preparatory Adherence Counseling ADHERENCEADULTScounselor and physician. Monthly supply of drugs will be dispensed.TheIntro

duce staff (nurses, community health workers) who will be involved inii.Current health statusFor example, if a patient has had cryptococcal meningitis, herpes zoster,CD4 cell counts are a measure of the patient’s immune status, thatis, the body’s ability to fight infections.HIV virus attacks CD4 lymphocytes and destroys them. (FHI/IMPACT 2003) 3: Preparatory Adherence Counseling • ADHERENCEADULTSLower CD4 counts signify advanced HIV disease and moreopportunistic infections. Severe opportunistic infections occur whenCD4 cell counts decrease to below 200 cells.There is good news! CD4 cell counts increase with treat

ment andIn order to increase CD4 cell counts patients need to take theirtreatment correctly and regularly for the rest of their lives.Viral load measures the amount of HIV in the blood.VL tests are very expensive and may not be available. Treatment canIn general, higher viral loads are associated with lower CD4 cell counts.Viral load decreases with ART.In order to achieve a decrease and maintain lower VL, patients need totake their treatment correctly and regularly for the rest of their lives.Higher viral load levels signify increased risk of transmitting infection.Persons with higher viral loads can transmit infection more easil

yto their partners through sex, through shared needles and throughblood and blood products.A woman with higher viral loads can transmit infection more easilyto her unborn child in the womb, at the time of delivery and throughbreast-feeding.v.What can the patient expect to see with treatment?Discuss that when treatment is taken correctly and regularly:The virus is controlled.Fewer CD4 cells are destroyed; as a result the CD4 cell count rises.The immune system becomes strong enough to fight infections soPatients feel better and stronger with an increase in body weight.As the immune system improves, disease progress is prevented.Tre

atment also reduces the chance of spreading infection.In order to control the virus you must take your medications ontime every day over the long termfor the rest of your life. While it isimportant toprovide accuratecounts andcare must bescare or • 3: Preparatory Adherence Counseling ADHERENCEADULTSIf medications are not taken properly, missed or stopped in between:Medications stop working and are no longer effective;The virus can become resistant to these medications;CD4 counts start dropping and the viral load starts rising;Old opportunistic infections can be reactivated or new infections occur;Patients need newer medic

ations that are not available and arePatients can spread resistant infections to partners.Use patient literacy materials on ARVs.The new virus can worsen their disease and hasten disease progress.Patients can also transmit resistant infections to their partners.infection more easily.Using condoms is very important to prevent transmission of infection toothers and to protect oneself from getting infected with a new strain ofand about the possibility of being pregnant or planning a pregnancy.alternative family planning methods with Lopinavir, Amprenavir, andFor patients who are pregnant or planning a pregnancy, medications likeEFV

cannot be used due to risk of fetal malformations. Treatment regimenfor these patients should include AZT and NVP, which have been tried and (FHI/IMPACT 2003) 3: Preparatory Adherence Counseling • ADHERENCEADULTSEmployment and work routine: To identify barriers to taking medicationsregularly.Daily routine—eating and sleeping pattern: To identify ways to integrate Patients need good nutritional intake to fightTravel routine: Patients who travel for work (migrant workers) or forother These influenceMedications: Discuss the number of ARV medications, the names andYou have to take three ARV medications: Zerit 40 mg, oneca

psule two times a day, Epivir 150 mg, also one tablet two times a dayand Stocrin 600 mg, one capsule once a day at night before sleeping.Please could you repeat what I just told you?You should take Zerit by mouth with a glass of water inthe morning at 8 am and in the evening at 8 pm. You may take thisThese medications are meant only for you. Do not share them withothers. If you share them, neither of you will benefit.Take all doses on time so that the medicine can have its full effectand the virus is controlled.Continue to take these medications, even when you feel better. Thesemedications do not remove the virus from the body. T

hey can onlycontrol the virus. Therefore you need to take these or similarmedications for the rest of your life.If you do not take them exactly as prescribed or miss doses, the medicinesmay stop working and the virus may become resistant. You will then • 3: Preparatory Adherence Counseling ADHERENCEADULTSor cupboard. Do not keep them near the kitchen sink or in thebathroom.Side effects: These need to be briefly touched upon during this session. Too•Frequency of visits to clinic—for example first four visits afterstarting ART to be every two weeks, then once every month.•Where the patient needs to report duri

ng clinic visits—for exampleat the reception counter of the health facility.•How to fix new appointments or change appointments if s/he cannotto learn about their treatment and ask questions. Fig. 3.1: Pill demonstration chart 3: Preparatory Adherence Counseling • ADHERENCEADULTSthe pharmacy. Inform the patient that s/he needs to meet the counselorand the doctor before proceeding to the pharmacy.based pill diary, treatment reminder cues, modified DOT, buddy system etc. •Avoid information overload. Patients may not be able to•Use simple language and terms. • 3: Preparatory Adherence Counseling ADH

ERENCEADULTS2.2Preparatory Counseling Session 2: Past opportunistic infections and what that implies Does the patient understand what his/her CD4 countViral load (if available)treatment taking with effectiveness of medication, improving immuneUse patient literacy material on ARVs. 1.The approach should be of a continuing discussion on issues relatedto treatment.2.Repeat information wherever necessary.3.Re-emphasize key messages.4.Discussion should be done in a non-judgmental way and should 3: Preparatory Adherence Counseling • ADHERENCEADULTS(a)Review the treatment regimen.(b)Use dummy pills to repeat instructions for the

patient.(a)Discuss potential side effects and plan for a response.What side effects to expect in the short-term;Who to contact—where to go for management of side effects, names ofUse patient literacy material on side effects.(b)Discuss the plan for routine follow-up.(c)Establish a contact system.Note patient’s detailed address including nearby landmarks so that patientPatient’s contact telephone numbers should be taken.Nurse counselor’s telephone contact number should be provided to the patient.(d)Help patient set goals.All patients may not have the ability to take medications on time and regularly. (FHI/IMPAC

T 2003) • 3: Preparatory Adherence Counseling ADHERENCEADULTS (for the next 1–2 weeks) for medication intake. (for the next 6 months or year) for health outcomestreatment reminder ‘cues’ such as linking medication intake tooffice, keeping medications at visible locations at home etc.(e)Integrate treatment into patient’s daily routine of activities.To be effective, ARV medications have to be taken on time, regularly andon integrating medication intake with the patient’s daily routine is extremelyhelps patients take their medications on time and regularly.Review the patient’s daily routine and

the plan to integrate treatment into the leaving for university.Evening dose of D4T and 3TC at 8 pm after dinner.EFV to be taken between 10–11 pm, before going to bed. 3: Preparatory Adherence Counseling • ADHERENCEADULTS2.3Preparatory Session 3: Assessment of PatientTo be properly prepared to start ART, patients generally require 2–3 meetingswith the adherence counselor. Some patients may need more than threewho appear to be ready and committed can start therapy.(a)Review the treatment regimen.(b)Discuss potential side effects and plan for a response.(c)Discuss the follow-up plan for routine follow-up.(d)Discuss

the adherence strategy.(e)Review contact system.(f)Review patient goals for his/her health. • 3: Preparatory Adherence Counseling ADHERENCEADULTS•HIV infection and disease stage•Treatment is not a cure•CD4 count—patient level and what it implies, expected change with•Viral load.intake, adherence and side effects. MODULE 4Ongoing Adherence • 4: Ongoing Adherence Counseling ADHERENCEADULTS 4: Ongoing Adherence Counseling • ADHERENCEADULTS To provide trainees with skills in ongoing adherence counselingTo provide trainees with skills in problem solving1.Presentation and discussion on ong

oing adherence counseling2.Role play3.Review or summary1.Additional reading material on Ongoing Counselling: Module 42.Patient literacy materials3.Checklist for ongoing counselingrelated side effects, disease progress, illnesses, and psychosocial problems. 60 min. • 4: Ongoing Adherence Counseling ADHERENCEADULTS 3 At the end of this session participantsshould have a basic understanding ofProblem solvingAddressing side effectsAssessing and supporting adherenceChallenges:Barriers change over timeMultiple factors influence adherence at any timeAdherence changes over time 4: Ongoing Adherence Counseling • ADHERENCEADU

LTS 56Assess AdherenceAdherence from pill counts: pills should have taken % Adherence % Adherence over last 4 days = # doses should have taken – # missed doses# doses should have taken 100 Review and assess adherenceover last month•Change in medicines or doses•Dietary instructions•Storage•Taken all doses•Taken on time•Reasons for missing dose•Complete pill count and self report Away from home Forgot/Busy Slept in Felt ill Ran out of pills Side effects Felt better Fear of side effects Pills do not help Did not want Family said no to Instructions not Reasons formissing doses 

9; 4: Ongoing Adherence Counseling ADHERENCEADULTS 89 WHAT WE CAN DOCollect meds in advanceCarr y meds with themUse reminder cues Enlist famil y su ort Address addictionTreat de p ression Enlist famil y su ortUse PLHA su ort g rou p s – COPEBARRIERSTravelin g Bus y Alcohol / dru g • p ression/ p s y chiatric illnessLivin g aloneFor g ot totakepills WHAT WE CAN DOEnhance counselingUse literacy materialsInvolve familymembers_________________ CounselingSupport disclosureKeep medicationswith friendBARRIERSInadequateknowledge Patient attitudes_________________StigmaDifficulty withdisclosurePills do nothelpFelt bet

terso did notcontinue__________Did not wantothers to see 4: Ongoing Adherence Counseling • ADHERENCEADULTS Use literacy materials Use dummy pills Repeat instructionsEnlist family support Treat depression andaddictionLiteracy levelsDepression/ psychiatric illness Alcohol / drugsInstructions notunderstoodWHAT WE CAN DOUse PLHA supportgroups – COPEIncome generationactivitiesFood donation programs Send CHW homeFamily supportBARRIERSNo employment Living alone AIDS dementiaUnable to care forself Send tracer CHWReminders, Phone callChange to nearest treatment siteDo not take a double doseWithin 3 hours of schedule

d dose take the missed dosethe next dose, carry on the treatment scheduleManage side effectsEnlist family supportDiscuss how to address them at start of ART as well asduring treatmentInform patients when to seek medical careUse patient literacy materials • 4: Ongoing Adherence Counseling ADHERENCEADULTS Commonly seen with AZT, DDI and KaletraUsually transient and resolves in 2–4 weeksRefer to the physician:If severe abdominal pain, respiratory difficulty anddisorientation — may be a sign of lactic acidosisSevere abdominal pain may also be a symptom ofpancreatitisIf patient is dehydratedIf fever, headache, disori

entation, alteredconsciousness — may indicate meningitis and not ADRTake with food if permittedEat more frequent small mealsAvoid greasy, spicy and fatty foods. Take bland lightlycooked food – rice, soups, bananas, biscuitsDrink sips of clean boiled water, weak tea, and lemonwater. Maintain hydrationContact nurse or doctor in case of fever, vomiting morethan three times/day, thirsty but unable to drink, pain inabdomen, breathlessness, confusionUsually transient and passes over 2–4 weeksIf accompanied by fever, disorientation, alteredconsciousness or convulsions may indicatemeningitis, encephalitis or space occupyin

glesion – refer patient to physician 4: Ongoing Adherence Counseling • ADHERENCEADULTS Rest in a quiet, dark roomPlace cold cloth over eyes and foreheadAvoid strong tea or coffeeIf not relieved with 4–5 doses of Paracetamol,consult health workerIf frequent and severe headaches or fever,vomiting, altered consciousness, blurred vision orconvulsions contact a nurse or doctor immediately Side effects: DiarrheaUsually transient and passes over 2–4 weeksRefer to the physicianIf blood or mucus or fever refer to physicianto treat infectionIf severe diarrheaMore than 5 times per day5 or more consecutive daysWeight lo

ss of more than 2 kgEat small meals more times a dayEat soft, easy-to-digest food – rice, bananas,biscuits. Avoid greasy, spicy and fatty foods.Drink sips of clean boiled water, weak tea, ORS,lemon water. Avoid orange juice or very salty soupsas they can increase diarrhea. Maintain hydration.If fever, mucus or blood in stools, diarrhea morethan 4–5 times a day for 5 or more days, contact • 4: Ongoing Adherence Counseling ADHERENCEADULTS Rashes mostly seen with NVP, EFV, Abacavir*Any new medication may cause allergic rashMild rash and itching can be treated withSevere rash (peeling of skin, watery discharge,blist

ering, and ulceration) requires immediatephysician referral and removal of medicationKeep skin clean and dryDrink plenty of water to keep skin hydratedAntihistamines to relieve itching and rashIf peeling of skin, blistering, or ulcerationUsually transient and disappear in 2–4 weeksEFV at bedtime reduces symptomsIf severe depression, loss of interest or suicidalideas, refer to the physician and counselor 4: Ongoing Adherence Counseling • ADHERENCEADULTS 24 Usually temporary and will resolve in few weeksTake EFV at bedtimeAvoid heavy meals before sleepingAvoid alcohol, drugsTalk about your feelings with your friends or

familyIf feel very sad, have thoughts of killingyourself, contact a nurse or doctor immediatelySide effects: FatigueFairly commonMultiple causes – HIV infection, medications,depression, anemiaRegular and restful routine helps to reducefatigueAlcohol and use of recreational drugs worsenfatigueAvoid alcohol, tobacco, Miraa and otherrecreational drugsLight physical exercise may helpBalanced diet with fruits and vegetablesConsult nurse or doctor if feel very depressed • 4: Ongoing Adherence Counseling ADHERENCEADULTS Mostly seen with D4T, DDIOther ARV medications and INH, Rifampicin can alsocause neuropathyIf severe and

associated with weakness and inabilityto walk – refer to the physician. Medications mayUsually non-reversibleVitamin supplements and antidepressants may relieveProtect your feetWear loose fitting shoes and socksKeep feet uncovered in bedSoak feet in warm water, massage feetDon’t walk too much at a timeInform health workerSide effects: Lipoatrophy/Lipodystrophy – fat redistributionUsually seen after several months treatmentmostly with D4T and PIsUsually not reversibleLimited treatment availableWhen associated with metabolic disturbances like e.g.hyperlipidemia or hyperglycemia, regimen may beManagement of diabetes a

nd hyperlipidemia required 4: Ongoing Adherence Counseling • ADHERENCEADULTS Hepatitis, pancreatitis, renal dysfunction, anemia,metabolic disturbances like hyperglycemia orhyperlipidemia are diagnosed through laboratoryRefer to the clinician for management when anyof the above seenDiscuss the follow up planReview upcoming travel plans, contactReview patient’s goals. Set new goalsSet up appointment for next visit • 4: Ongoing Adherence Counseling ADHERENCEADULTS cases to discuss and role-play. This activity is designed to enhance counselingFlip Chart, checklists,patient literacy 60 min. 4: Ongoing Adherence Cou

nseling • ADHERENCEADULTS on first line ART (3TC/D4T/EFV) and is being followed by DirectlyAdministered ART (DAART) at CPGH. He has had TB and cryptococcalmeningitis last year. He lives with his girlfriend in the suburbs and hasmonthly visit it is noticed that he has failed to attend DAART on twocounseling plan highlighting the issues (side effects, travel, change inabdomen. Her CD4 count was 23 cells at the time of starting ART. Shehas had TB and herpes zoster before starting ART.Tom is a 40-year-old barman in a city hotel. He lives alone. He startedART (3TC/D4T/EFV) seven months back. He has attended all his monthlya comm

unity health worker. He has been drinking heavily and says he is • 4: Ongoing Adherence Counseling ADHERENCEADULTS Client’s name ................................................................................................................. Review the patient’s experience with treatment and adherence over the past month Drug regimen and adherence—pill counts, self report Discuss side effects and actions taken Discuss need for continued prevention Review experience with follow-up plan Discuss follow-up plan for next month Review patient’s goals and success at achieving them Review barriers to adherence

Buddy reminder—discuss role of support person Review pill diary Review barriers to adherence Poor communication Low level of literacy Inadequate understanding of HIV/AIDS Lack of social support Failure to disclose status Alcohol and drug use Mental state Fill ART register, schedule next appointment and complete appointment card Volunteer DiscussionFlip Chart, Additional 15 min.Activity 3:Review. Q and A.Ask two volunteers to come up and present main points for the day. Allow 4: Ongoing Adherence Counseling • ADHERENCEADULTS 1.FOLLOW-UP COUNSELING AND ONGOING SUPPORTtreatment, face new challenges, experience side effe

cts or feel better.available to provide support when necessary. Ongoing counseling may be1.1Follow-Up Counseling Session(a)Review the treatment regimen.(b)Discuss adherence.(c)Discuss side effects experienced and actions taken.Discuss side effects experienced since last visit and how patient addressed changes over • 4: Ongoing Adherence Counseling ADHERENCEADULTS # of pills patient should have taken – # of pills missed × 100Name ofNumber ofNumber of pillsNumber of pillsNumber of% Adherencemedicationpillspatient expected topatient actuallypills misseddispensedhave takentookA – B × 100(A)(B) A(Take into

account(Take intowhether patient hasaccount remainingcome early, on timepills and whetheror after the refill duepatient has comeearly, on time orE.g.605450454 – 4 × 100d4T(10 pills remaining 54One tablet(For 30(Patient came inwhen they should=taken twicedays)3 days early)have been only 6)Adherence from Self-Reportin the table below.Patients should be asked about missed doses: How many doses of d4T did you miss – yesterday, the day × 100Names ofYesterdayDay beforeThe day before% AdherenceMedicationsyesterday(Missed doses)(Missed doses)(Missed doses)E.g. d4T0116 – 2 × 100 = 67%One tablet6 4: Ongoing Adherence

Counseling • ADHERENCEADULTS Advise patient on how to manage short-term and mild side effects. Forserious side effects refer to the physician. (Discussed in detail later inIn collaboration with the physician, set up ways to address side effects.to attend clinic on scheduled days because of travel upcountry, working(e)Discuss the follow-up plan for routine follow-up.problems, separation or divorce, pregnancy, new child, death of a loved(f)Review patient goals and patient’s success withWas the patient able to achieve his goals?Integrate treatment into the patient’s daily routine of activities.Multiplefactors •

4: Ongoing Adherence Counseling ADHERENCEADULTS1.2Ongoing Supporta. Practical problem solvingPossible barriersProblem solvingForgot to take pillsPatient forgot because:•Traveling•Alcohol/active drug use•Depression/psychiatric•Living alone and sick•Homeless, no family•Plan before travel, take•Use reminder cues•Address addiction•Enlist family support•Treat depression•Use PLHA support•Inadequate knowledge•Incorrect beliefs and•Enhanced counseling•Provide scientific•Enlist family support•Inadequate knowledge•Incorrect beliefs and•Family c

ounseling•Provide scientific•Literacy levels•Depression/psychiatric•Alcohol/active drug use•Insufficient time to•Use literacy materials•Use dummy pills and•Ask patient to repeat•Enlist family support•Treat depression•Address addiction 4: Ongoing Adherence Counseling • ADHERENCEADULTSoutside their place of residence, being busy with other things, forgetting,employment, confidentiality issues, distance from the health center, economic•Living alone•No employment•AIDS dementia/mental•Use PLHA support•Register with the•Link with FBO•Locate

family and•Identify a friend who•Stigma at place of work•Non-disclosure in the•Provide counseling•Identify a friend whoFear of toxicity•Insufficient preparation•Inadequate knowledge•Provide scientific•Counsel on risks of Table Continued.Possible barriersProblem solving • 4: Ongoing Adherence Counseling ADHERENCEADULTSwith physician, counselor, social worker, psychiatrist, dermatologist,Reasons for missing doses may vary from simply forgetting, travel, workclinic, not understanding instructions, feeling better, family pressure not toTake the missed dose if within 3 hours of the

scheduled time.Drop the missed dose and take the next dose on time if after 3 hours ofscheduled dose time. Carry on with the treatment schedule. Mark the pilldiary for the missed dose with the reason for missing medication.If severe side effects occur, inform the physician or adherence counseloror health worker.Patients may find themselves unable to cope with some of the side effects 4: Ongoing Adherence Counseling • ADHERENCEADULTSWith newer preparations coming into the market, once-a-day dosing couldrelated to taking a large number of pills. They may get tired of takingit is useful to keep it in mind when following-up pa

tients on ART. effects. Short-term side effects generally disappear over 2–6 weeks. PatientsManagement of long-term side effects or adverse events is to be done by thephysician. Physicians may need to change the ARV medication or prescribeNausea and vomiting are commonly seen with NRTIs: AZT, DDI andwith Protease inhibitors: Kaletra, Crixivan, Ritonavir, Saquinavir etc.patient may take. Nausea and vomiting associated with ART is usually • 4: Ongoing Adherence Counseling ADHERENCEADULTSday, the patient may develop dehydration (dry tongue, loose skin, listless-If vomiting is accompanied by fever, headache, disorientatio

n, or alterednurse as they may be suffering from other conditions such as meningitis,Follow doctor’s instructions; ask if medications can be taken with food.Eat more frequent small meals.Avoid greasy, spicy and fatty foods. Take bland, lightly cooked food—Drink sips of clean boiled water, weak tea, and lemon water. Maintaincontinues for more than one day, thirsty but unable to drink, not passingHeadache is most commonly seen with AZT, 3TC, d4T, DDI, Crixivan,Saquinavir and NVP. Headache can also be seen with any new medication. Itnew medications. If headache is accompanied by fever, disorientation, alteredUse balm or ru

bs to relieve headache. Gently rub temples and back of neck.Rest in a quiet, dark room with no disturbance.Place a cold cloth over eyes and forehead.Avoid strong tea or coffee. Avoid items that trigger headaches.Take a paracetamol tablet if not improving with rubs.If not relieved with 4–5 doses of paracetamol, consult nurse or doctor.If frequent and severe headaches, fever, vomiting, altered consciousness,blurred vision or fits occur, contact the doctor immediately. 4: Ongoing Adherence Counseling • ADHERENCEADULTSDiarrhea can occur with d4T, DDI, Kaletra, Crixivan, Ritonavir, Saquinavirand EFV. It is usually transien

t and passes over 2–4 weeks. Patients need toseek medical attention if diarrhea is accompanied by blood, mucus or fever,than 5 times per day, for 5 or more consecutive days, or results in weight lossEat small meals more times a day.rice, bananas, biscuits. Avoid greasy, spicyDrink sips of clean boiled water, weak tea, oral rehydration solution(ORS), lemon water. Avoid orange juice or very salty soups as they canincrease diarrhea. Maintain hydration.If diarrhea is accompanied by fever, mucus or blood in stools, or is morethan 4–5 times a day, contact the nurse or doctor.Rashes are mostly seen with NVP, EFV and Abacavir.

It is important to keepin mind that any new medication or ARV can also cause allergic rashes.discharge, blistering, and ulceration requires immediate physician referraland removing of offending medication as this can be a life threateningmedication should not be restarted after such a strong reaction. With NVP,Keep skin clean and dry.Use mild soaps—avoid scented and strong soaps.Avoid the sun when you have a rash.Doctors may prescribe benadryl, or other antihistaminic medications torelieve itching and rash.If rash is severe, associated with peeling of skin, blistering, ulcerationor fever, contact the nurse or doctor immediat

ely. You will need to change • 4: Ongoing Adherence Counseling ADHERENCEADULTSwith d4T, DDI, ddC, 3TC, Ritonavir. Other ARV medications and INH,Rifampicin, can also cause neuropathy. Neuropathy with ARVs is usuallyprogressive unless the offending medication is changed. Patients should reportProtect your feet.Wear loose fitting shoes and socks.Keep feet uncovered in bed.Don’t walk too much at a stretch.Ask doctor for pain relief medications, vitamin supplements.If no improvement, or difficulty in walking, contact nurse or physician.Bad dreams, nightmares, headache, insomnia, depression, anxiety, difficultyin concentrat

ing and dizziness are some symptoms seen with EFV. CNSsymptoms pass over time. Taking medication at bedtime helps alleviate someor physician immediately. EFV may need to be replaced by anotherSymptoms are usually temporary and pass in a few weeks.Take EFV at bedtime to minimize effects.Avoid a heavy meal before sleeping.Avoid alcohol and drugs.If you feel dizzy, sit down till the feeling goes away and try not to movequickly or lift anything heavy.Talk about your feelings with your friends or family.contact the nurse or doctor. 4: Ongoing Adherence Counseling • ADHERENCEADULTSAvoid alcohol, tobacco and recreational drugs.Li

ght physical exercise helps.Take a balanced diet that includes vegetables and fruits.Consult a doctor if you feel depressed, sad of have thoughts of suicide.Patients who have been on treatment with d4T, or protease inhibitors, forPatients should undergo routine check-ups by their physician. ARVside effects may be needed. is mostly seen with the use of Efavirenz. Hair loss is usuallytemporary. Patients can be advised to protect the hair from damage by notusing hair-dyes and not braiding the hair. Patients should be discouragedThese are side effects that are usually diagnosed through laboratory tests.abdomen may trigger the search

for side effects such as lactic acidosis, pancre-atitis, and hepatitis. For others such as hyperlipidemia or hyperglycemia, • 4: Ongoing Adherence Counseling ADHERENCEADULTS peripheralneuropathy, headache,rash, insomnia, nausea,Rare: pancreatitis,1.Inform the physician.2.Patients should report3.Peripheral neuropathy4.Medication will need tosevere neuropathy occur. Side effectsAction to be takenmedications that are to be used in the ART program in Mombasa. These dizziness,Rare: lactic acidosis—hepatic1.Inform the physician.2.Patients should reportVidex anxiety, headache,Rare: pancreatitis, peripheralneuropathy, lactic

acidosis—1.Inform the physician.2.Patients should report3.Nausea and diarrhea4.Peripheral neuropathy5.Medication will need tooccur. 4: Ongoing Adherence Counseling • ADHERENCEADULTS Rash, centralRare: severe rash, liver1.Inform the physician.2.Mild-to-moderate rash3.May consider changing4.Central nervous system nausea, anorexia,Rare: bone marrow1.Inform the physician.2.Nausea and diarrhea3.Patients should reportTable contd.Side effectsAction to be taken • 4: Ongoing Adherence Counseling ADHERENCEADULTS headacheRare: rash, liver toxicity,1.Inform physician.2.Liver enzymes in excess3.Mild rash usually gastroint

estinalRare: liver toxicity,pancreatitis, hyperglycemia,1.Inform physician.2.GI intolerance generally3.Hyperglycemia may4.Treatment may need to5.Lipid abnormalities6.Continue treatment incases with lipodystrophy.7.Liver enzymes need Table contd.Side effectsAction to be taken Introduction • ADHERENCEADULTSAltice, F.L., F. Mostashari, G.H. Friedland. Trust and acceptance of and adherenceto antiretroviral therapy. J of Acquired Immune Deficiency Syndromes 2001,Bangsberg, D.R., F.M. Hechts, M. Chesney et al. Comparing objective methods of 2001; 5: 575–81.Chesney, M.A. Factors affecting adherence to antiretroviral therapy.

2000; 30 S171–S76.Farmer, P., F. Leander, J.S. Mukherjee et al. Community-based approaches to HIV 358 (2001): 404–9.Fischl, Margaret, Directly Observed Therapy for HIV Therapy in Corrections: ReadyIckovics, J.R. and C.S. Meads. Adherence to HAART among patients with HIV:AIDS Care 2002, 14(3): 309–18.tation of findings on a DOT HAART study at the Workshop of the Forum forCollaborative HIV Research, April 2001, Washington DC. In publishing.Liu, H., C. Golin, L. Miller, A. Kaplan. A comparison study of multiple measures 2001; 134: 968–77.Max, B. and R. Scherer. Management of the adverse effects of antiretroviral

therapy 2000; 30: S96–S116.Paterson, D.L., S. Swindells, J. Mohr, M. Brester et al. Adherence to protease in- 2000 Jul 4; 133(1): 21–30.Promoting Adherence to HIV Antiretroviral therapy. A Best Practice Manual. AIDSInstitute. New York Department of Health.AIDS Care 1996, 8: 261–9.Stenzel, M.S., M. McKenzie, J.A. Mitty, T.P. Flannigan. Enhancing adherence toHAART: Pilot program of modified directly observed therapy. 2001Jun; 11(6): 317–9, 324–8. • Introduction ADHERENCEADULTSAIDS Education and Training Centres (AETC), Thehttp://www.aids-ed.orghttp://www.aidsmap.comhttp://www.hivatis.orghttp://www.m

edscape.comhttp//www.aidsinfo.nih.gov/drugs 116 • Information Resources Introduction • ADHERENCEADULTSAcute HIV Syndromeinfection. It is characterized by fever, pharyngitis, rash, body ache, joint painsDose response effect: Dose response effect refers to a casual relationship betweentherapy, as non-adherence to treatment increases, viral load levels increase ininfection or may be part of an allergic response to a systemic viral illness or: Inflammation of the liver. It may be caused by a viral, bacterial or amoebic: An inflammation of the skin caused by a Varicella-zoster virusmellitus. Hyperglycemia may be seen with t

he use of protease inhibitors.Hypersensitivity reactions: An allergic disorder in which the body becomesImmune reactivation syndromeopportunistic infections seen following the initiation of effective antiretroviraltherapy. This reflects the immediate improvements in immune function thatoccur as levels of HIV RNA drop and the immunosuppressive effects of HIV • Introduction ADHERENCEADULTSImmune suppressionLipoatrophymetabolism or of the distribution of fat in the body. In HIV/AIDS, lipodystrophyaround the abdomen resulting in peripheral wasting and truncal obesity. This isLymphadenopathy: Enlargement of the lymph nodes. This

may be due to anLymphomaMaximal and durable suppression of the virus: An inflammation of the meninges (connective tissue membranes that: Metabolism involves the breakdown of complex organicconstituents of the body with liberation of energy, which is required for otherNeuropathymost often affecting the side of the tongue.PancreatitisProtease inhibitorsenzyme. This class includes medications such as Ritonavir, Indinavir,Amprenavir, Saquinavir, and Nelfinavir.Recreational drugsSteven Johnson syndromeoffending medication.ToxoplasmosisToxoplasma gondiiViral resistance: The degree to which the virus remains unaffected by antiretrovira