ADHERENCE Patrick Desmet HIV / Therapycounselor

1. What is adherence and why is it important? 2. The factors that influence adherence? 3. How can we improve adherence? D V D - Testimonies

“ …Stick to the times, having the right amount of drugs at all times in the system. Otherwise the virus will breakthrough and starts multiplying again…” “…Never missed a dose during my pregnancy…” “…Taking your medication as directed, to have a sufficient dose that will have the desired effect…” “…The ability to take your drugs to an extent that they will work…”

The medication adherence is the ability of the patient to be involved in: choosing, starting, managing and maintaining a given therapeutic combination regimen to control viral replication and improve the immune function. Jane M.Simoni Ph D What is Adherence ?

“ …Stick to the times, having the right amount of drugs at all times in the system. Otherwise the virus will breakthrough and starts multiplying again….” “ …Taking your medication as directed, to have a sufficient dose that will have the desired effect…..”

Electronic Event Monitoring (MEMS ® ) UZ Leuven Fabienne Dobbels

“….Otherwise the virus will breakthrough and starts multiplying again” Adapted from: Paterson DL et al. Ann Intern Med 2000;133: Mean adherence rate Relationship of adherence (measured by MEMS® 81 patients / doses / 6 months of FU ) to virologic success >95%90%-95%80%-90%70%-80%<70% Patients Reaching Undetectable HIV RNA LOQ 400 (%) P = <0.001 Greatest danger zone for developing resistance

Log concentration (ng/mL) day 1day 2day 3day 4day 5 dose miss EC 50 Even 48 hours post-dose, plasma levels remain above EC50 Half life: >12 hours Examples: EFV, TDF, ddI, Atazanavir “ …Taking your medication as directed, to have a sufficient dose that will have the desired effect….”

ADHERENCE vs. PHARMACY REFILLS Hogg et al.7th CROI 2000/abs73. Objective : HIV-disease progression / AIDS vs. Adherence Methods : 950 patients ARV naive (85% PI and 15%NNRTI) + 2NRTI Median follow-up 13 months Pharmacy based records, refills Conclusion For each 10% decline in adherence 16% increase in mortality

“ …It’s difficult when I need to go to an event, wedding, party, …. Anytime where you are exposed taking your drugs…” Disclosure “… Absolutely terrible, it was worse going to therapy than having my AIDS diagnosis. For me it was the slippery slope downhill…” Anxiety

“…I forgot my medication for days, because I was living a very hard life. My mind was thinking of many other things than medication….” “….It was the most difficult thing I had to do in my life…” “… I was never been sick since my diagnosis it was very difficult to convince myself to start up therapy…” Motivation

MOTIVATION ESTABLISH : READINESS COMMITMENT ASYMPTOMATIC vs.SYMPTOMATIC MOTIVATION Preventive Measures ART-SE Distress ART Stop = SE Relief Reinforce the Necessity OI-status, Pill Burden, Drug-drug Interactions LONG-TERM TREATMENT

“…Somethimes I rush to work, because there is an important meeting I need to go to and I forgot to take my medication…” “…Yes sometimes I forgot them because I was not at home and I was in a rush…” Anticipation

Why do Patients Miss Doses? Adapted from: Gifford AL et al. JAIDS 2000; 23: Reasons given for missing antiretroviral doses (structured questionnaire) possible interventions simplify dosing schedule decrease pill burden other % n= Too busy/simply forgot Away from home Change in daily routine Felt depressed/overwhelmed Took drug holiday/medication break Ran out of medication Too many pills Worried about becoming 'immune' Felt drug was too toxic Wanted to avoid side effects Didn't want others to notice Reminder of HIV infection Confused about dosage direction Didn't think it was improving health To make it last longer Were told the medicine is no good

ADHERENCE

Denial HIV- status Negative beliefs (negative arv history partner) Fear of Short or Longterm - Side Effects Lack off trust towards Health-Care team PATIENT FACTORS ARV = ongoing reminder of HIV status

HEALTHCARE FACTORS STAFF TRAINING INSUFFICIENT STAFF & SPACE for COUNSELLING CONFIDENTIALITY (reception, waiting rooms, personalised interviews vs. Multidisciplinary team) POOR ORGANIZATION OF DAILY CARE AUTHORITARIAN AND JUDGEMENTAL ATTITUDE CONFLICTING PATIENT-INFORMATION (EDUCATION)

Cultural and Socio-economic Status Drug (speed, ecstasy…) and Alcohol use Fear of Disclosure : ARV > trigger HIV-Status Welfare status: housing, financial support… Stigmatisation : cultural / religious beliefs

TREATMENT FACTORS CONCOMITANT /ALTERNATIVE MEDICINE DRUG TOXICITIES: SHORT AND LONGTERM SE COMPLEX REGIMEN / PILL BURDEN DOSING FREQUENCY / DRUG INTERACTIONS DIETARY RESTRICTIONS LOGISTICAL : APPROVALS / AVAILABILITY OF DRUGS ACCUMULATIVE TREATMENT CHANGES

“…It’s incredible important to get the right regimen for the right person, it’s really about looking at the individual patient….” “…As a patient I need much more information…” “…You need to prepare the patient properly…” Fit the ARV’s into the lifestyle

PATIENT EMPOWERMENT BASIC KNOWLEDGE SKILLS & MOTIVATION HEALTH BELIEFS & CULTURAL / SOCIO-ECONOMIC STATUS

Flow Chart Counseling New HIV+  TRUST  KNOWLEDGE  LIFESTYLE  Potential ADHERENCE and ARV-BARRIERS OPTIMISING HAART PEOPLES LIVES = VARIABLE BEHAVIOR IMPACT from ENVIRONMENT  SOCIAL FACTORS  NEW DIAGNOSES DYNAMIC MONITORING 3 STEP APPROACH = a stepwise informationflow

Counseltopics Sec.Prevention: Safe sex,… HIV basics AIDS vs. HIV Disclosure CD4 & VL-interpretation before and during therapy Life expectansy Evaluation 2 ARV proposals  Lifestyle:Diet, work, co-medication…  Potential Adherence and Therapy barriers  Social status check cf. social nurses!  Drug specific Side effects: short & longterm Initiate Dummy Run ARV support : community (sensoa) Adherence: timing, dosing, food, anticipation Adherence vs. Resistance 2 visits

Counseltopics Drugplanning: optimizing drugintake, identify ARV- reminders, ARV-storage, food recommendations…. Patient rehearses drugplanning and potential SE Drug specific SEffects Supportive Tools Counseltopics Telephone call patient / counselor Anticipate SEffects cf Dr. Adherence check: = Timing, dosing, diet,anticipation, ARV_storage. Reasons for non-adherence Initiation Haart and follow- up READINESS COMMITMENT

Pillbox and reminder system UZ Leuven

Vibrating alarms, watches, cell-phone alarm, SMS

ADHERENCE COUNSELING MULTIDISCIPLINARY TEAM EFFORT NEGOTIATION INFORMATION EDUCATION BEFORE, DURING and AFTER START of ART