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Patient Monitoring: Chronic HIV Care and ART Sandy Gove WHO HIV Department


HIV Care/ART Card is on the last 2 pages of this module ... eligible and ready for ART (prepared for adherence, clinical team has met) ... – PowerPoint PPT presentation

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Title: Patient Monitoring: Chronic HIV Care and ART Sandy Gove WHO HIV Department

Patient Monitoring Chronic HIV Care and
ARTSandy Gove WHO HIV Department
HIV Care/ART Card is on the last 2 pages of this
module Patient monitoring needs to be integrated
within comprehensive HIV care and ART!
Integrated Management of Adolescent and Adult
Illness (IMAI)-4 HIV-relevant guideline modules
Chronic HIV Care with ARV TherapyAcute Care
(opportunistic infections)- General Principles
of Good Chronic Care Palliative Care (plus
Caregiver Booklet )
  • Sequence of care

ART scale-up
  • HIV care
  • ART
  • Prevention
  • As needed to facilitate scale-up
  • Lab
  • Patient monitoring system
  • Start with paper, paper base
  • Electronics as appropriate
  • Phase 1- system available right now and for all
    facilities (without special project funding)
  • Phase 2- as electronic systems become available,
    where support exists

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Patient monitoring guidelines are based on
  • Standardized core and other data elements- agreed
    by WHO, CDC, USAID, PEPFAR, multiple NGOS
    attending a WHO Patient Monitoring meeting in
    March 2004
  • Collecting and analyzing only what is needed for
    patient management and for clinic, district and
    national management
  • Allowing flexibility for additional data
    collection and analysis
  • However
  • Clear distinction is made between what is
    essential and what should be reserved for extra
    operational research or data summaries.
  • If data collection is not simple, it can be a
    barrier to scaling-up ART.

TB experience
  • TB
  • Standardized treatment card
  • Standardized register
  • Globally standardized definitions
  • Deliberately constrains data collected
  • Based on long experience
  • Recently, new TB-HIV indicators
  • Disease-specific (vertical)
  • ART/ chronic HIV care-
  • Builds on TB experience but with key alterations
  • Also requires a simplified disease-specific
  • Can pave the way or fit with similar methods for
    diabetes, other 'true' chronic illnesses
  • Paper base is important for feasibility

Enrolled in HIV care and not yet eligible for
ART B (Total new continuing)
New in HIV care and not yet eligible for ART A
Enrolled in HIV care and eligible for
ART D (Total new continuing- includes those
who decline ART)
New in HIV care and eligible for ART C
Died in preART care Lost Transferred out
Non-naïve patients to ART who are not Transfer In
with records
Enrolled in HIV care and eligible and ready for
Total ever started on ART in this facility F
New on ART this month G
New on ART this month G
Start or continue on original first-line ARV
regimen H
TI Transfer In with records Add to cohort
according to ART start date
DEAD after starting ART TO Transfer
out LOST STOPped ART (some Restart)
Substituted to alternative first-line ARV
regimen I
Switched to second-line (or higher) ARV regimen J
HW fills out HIV care/ART card. Card defines
minimal data to be collected. HW codes are on
the card
If switch to second line, substitutions, stop,
etc. MO decides, consults, log book, clinician
coding list- record on card
Pre-ART register Monthly ART register
Cohort analyses at 6,12 months then yearly ?
Calculate indicators for clinic use only ?
Calculate agreed district, national,
international indicators
Monthly (cross-sectional) report Input to monthly
drug orders if required
Regional team to MOH to AFRO, HQ, agencies
Patient monitoring system
  • Paper system is based on 6 items
  • A patient-held card
  • A facility-held chronic care card
  • HIV Care/ART Card or
  • Same data elements in another format
  • HIV Care pre-ART register
  • ART Register
  • Monthly report (updated from
  • Cohort analysis report
  • This can serve multiple needs
  • Direct patient care (facilitates paradigm shift
    from Acute to Chronic Care)
  • Drug supply monitoring and preparation of
    facility drug orders
  • Data summarized and reported to meet district and
    national programme needs and track progress to
    targets (3x5 2,7,10 etc)

Format of the card can be changed. Standardized
variables and codes are what is important.
HIV care/ART card- adapt in country during IMAI
  • Agreement is being finalized on the standardized
    data elements
  • Definitions
  • Coding
  • Freedom to
  • Use different formats including full patient
  • Collect additional data
  • Country adaptation, as clinical guidelines are
  • If no INH prophylaxis for HIV patients, no column
    on card
  • Etc

HIV Care/ART Card adaptation
  • Most important to standardize system nationally
    with allowances for collecting more
    data/different formats for patient cards or
  • Number pages per patient- visit
  • Wide range from .05 (multiple visits on single
    card extract key data) to 8 pages
  • Card versus multiple page chart

Substantial variation in data retained on
  • Simplest, limit paper
  • Clinical review assisted by laminated form
  • Record key treatment data and pertinent positives
  • Other details may be in patient-held exercise
    book or 'patient passport'
  • Example IMAI Malawi
  • More elaborate
  • All positives and negatives of clinical review
  • Detailed treatment data
  • Requires full chart
  • What is really needed?

HIV Care/ART Card backside in IMAI patient
education and support
  • Education
  • HIV basics, disease progression
  • Treatments available
  • Support
  • Psychosocial
  • Disclosure
  • Family
  • Prevention
  • Adherence
  • Preparation
  • Decide when ready- results clinical team meeting
  • Support
  • Problem solving

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2 registers (1) Chronic HIV Care PreART
  • When registered for HIV care
  • Date HIV
  • Entry point
  • Start/stop dates prophylaxis- CTX, fluconazole
  • Pregnancy, TB
  • When medically eligible for ART
  • When medically eligible and ready for ART
    (prepared for adherence, clinical team has met)
  • When ART started plus unique patient identifier
  • Dead before ART
  • Lost or Transfer out before ART

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2 registers (2) ART Register (incl. post-ART)
  • Cohorts formed in ART register (not PreART
    register) by month
  • Date ART started, unique identity number
  • Why eligible 1clinical only 2CD4 3TLC
  • At start ART function, weight, (CD4)
  • Same as PreART register (transfer)
  • Start/stop dates prophylaxis- CTX, fluconazole
  • Pregnancy, TB

ART register- continued
  • Original regimen (coded)
  • Substitutions within first line and switches to
    second line-- reason (code) and date
  • Months 0 to 24
  • Each month current regimen (coded)
  • At 6, 12 months function, weight gain 10,
  • Then each year function, (CD4)

Why STOP ART- reason codes
  • 1 Toxicity/ side effects
  • 2 Pregnancy- planned treatment interruption
  • 3 Treatment Failure
  • 4 Poor Adherence
  • 5 Illness, Hospitalization
  • 6 Drug out of Stock
  • 7 patient lacked financial Resources
  • 8 other patient Decision
  • 9 planned treatment Interruption (put reason
  • 10 Other

Why change ARV drug or regimen
  • 1 Toxicity/ side effects
  • 2 Pregnancy
  • 3 Risk of pregnancy
  • 4 due to new TB
  • 5 New drug available
  • 6 Drug out of Stock
  • 7 0ther reason (specify)_____________
  • Reasons for switch to 2nd-Line Regimen only
  • 8 Clinical treatment failure
  • 9 Immunologic failure
  • 10 Virologic failure

2 registers? 2 reports
  • Monthly report
  • New and cumulative ever
  • Enrolled in HIV care
  • Started on ART at this facility
  • Disaggregated by sex, pregnancy, age
  • Transfer in (already on ART)
  • Restart ART
  • Patients eligible for ART but not started
  • ARV regimens- number on
  • Each regimen
  • First-line
  • Second-line
  • Lost, Dead, Stopped, Transfer out
  • Cohort data for last month
  • Median CD4 baseline, 6 and 12 mo on ART
  • Picked up ARVs 6/6 or 12/12 months
  • Cohort analysis
  • (quarterly or other periodicity)
  • Patient status
  • Alive- on or off ART, regimen
  • Dead
  • Lost
  • Transferred out
  • Functional status
  • Median or proportion with CD4200

Cohort analysis 6 mo, 12 mo, yearly
  • Proportion of patients on ART with weight gain
    10 (6, 12 mo)
  • Proportion working, ambulatory, bedridden
  • Proportion alive and on ART at 6,12 months then
  • Proportion still on a first-line regimen
  • Proportion still on original first-line regimen
  • Proportion who have substituted to an alternative
    first-line regimen
  • Proportion switched to a second-line (or higher)
  • Proportion of CD4 counts done which are 200 or
    median, increase(optional)

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Treatment Centre at District Hospital/HC IV
Register at Health centre
Clinical team
RN, medical aid
Nursing assistant, lay providers
Nursing assistant, lay providers
Consult, refer, back-refer, visit
Clinical team
Visits by district or regional ART
team/coordinator- Help with registers, reports,
cohort analysis
Malawi cohort and 'cumulative' analyses
  • Cumulative- Total registered on ART since start
  • Cohort- Number registered in that quarter
  • Alive and on ART
  • On original first-line regimen (Start)
  • On alternative first-line (Substituted)
  • On second-line regimen (Switched)
  • Stopped
  • Defaulted ? call 'Lost' to distinguish from TB
  • Transferred out
  • Of those alive ambulatory, at work, side
    effects, drug adherence 95

Malawi- logistics in managing many patients on ART
  • Hanging files- cards are stored sequentially
  • Patient held cards with number and date starting

Matching electronic version
  • Designed so it can enter at various steps and be
    interchangeable with paper
  • Paper card- electronic ? generate register
  • Paper card to paper register? electronic entry
  • Paper card to paper register to monthly report,
    cohort reports? send or call by mobile phone ?
    computer entry
  • Computer generated paper register
  • For 2006-2007
  • For use in facilities without electronics
  • For back-up when computer doesn't work

Computer system centrally needed by all
  • For monthly and cohort report data
  • To handle Transfer In and Transfer Out patients
  • Needs to link with drug supply

Country adaptation of the card, register, report
  • Do at the same time as the adaptation of the
    clinical guidelines
  • In Ethiopia, added 7 hours to first 3 day
    adaptation workshop

HIV Care /ART Card, pre-ART and ART registers in
  • First pre-tested in Masaka region (4 districts),
    Uganda when training 70 health workers in
    February 2004.
  • Registers introduced during post-training on-site
    visits in March and April 2004
  • Many health workers had made up their own
  • Used in Hoima Region (4 districts) Uganda with
    pretest of training materials to support use of
    the registers

HIV Care /ART Card in Uganda
  • Variables in the card and registers (TB status,
    clinical stage, prophylaxis, FP status, ART
    eligibility /regimen, etc) are embedded in the
    4.5 day Basic ART clinical training course.
  • Health workers learn the clinical care process
    and how to fill out the card at the same time,
    with exercises and practice.

HIV Care /ART Card, pre-ART and ART registers
  • As part of the 5 day Basic ART Clinical Course
  • As 4 hour additional training for those who will
    do patient tracking and monitoring in the
    health facility
  • Training "refreshed" during on site
    post-training visits individual training

HIV Care /ART Card, pre-ART and ART registers in
  • Used in 18 facilities (1 Regional Hospital AIDS
    Clinic, 1 ART Clinic -600 patients, 4 District
    Hospital AIDS Clinics, 12 HC IV and III)
  • Slightly revised after first 4 weeks of use

HIV Care /ART Card, pre-ART and ART registers in
  • Feedback during on-site visits after training
    (not quantitative due to the limited number of
    facilities and recent introduction)
  • HW Useful tool providing streamlined information
  • Easy to fill out the card while doing the
    clinical review- part of the same process
  • Easy to transfer info into the register
  • Easy to quickly perform clinical review on
  • basis of data collected during previous
  • Trainers 45 minutes needed to "refresh" on how
    to fill out the card and show how to use the

HIV Care /ART Card, pre-ART and ART registers in
ART Clinic, Masaka
  • Progressively replacing a 4 page HIV Care /ART
    record as ART is scaled-up from 100 to 600
  • Feedback from health workers
  • HW Useful tool providing streamlined information
  • Around 20 minutes per patient are saved since
    using this card
  • They like "everything on one page" demographic,
    clinical and ART data

Where electronics might enter
  • District outpatient, health centre III/IV paper
  • Agreed data into paper register monthly reports,
    clinical team uses date
  • Mobile phone
  • District or regional team enters register data
    into computer? cohort analyses, indicators
  • Enter agreed data into palm or computer- generate
    monthly reports
  • Computer generation of cohort analyses and

Number and percent of people with advanced HIV
infection receiving ART
  • In clinics with ART services, a more specific
  • Numerator
  • Patients on ART
  • Denominator
  • Patients medically eligible and ready for ART
  • These patients have all accessed services.
  • UNGASS indicator based on total patients
    receiving ART
  • Denominator estimated patients with AIDS (15
    those infected)

Monthly analyses possible without a register or
  • patients with good adherence
  • Review reasons for fair or poor adherence
  • Patients with special problems
  • patients referred
  • Identify patients for review at clinical team
  • Patient monitoring as tool for quality
  • Card sorts, stickers, flags
  • Motivation, needs to be satisfying and possibly

Training materials
  • Training to fill out HIV Care/ART Card integrated
    within WHO Basic ART Clinical Training course
  • Module on how to fill out registers, do card
    sorts, monthly reports, use data- for health
    worker or 'professional' lay provider or HW
  • Module on supervising and summing monthly and
    cohort analysis reports (similar to TB district
    coordinator training module) district coordinator

Current concerns
  • Importance of supporting card/register with
    training materials
  • Need rapid regional review and further pretesting
  • Timeliness-
  • Programmes are starting to treat patients
  • Training is happening
  • Staff are making up cards and registers in
    absence of simple standards
  • Urgent need to address children
  • Draft card for further expert input

Further work national adaptation needed to deal
  • Logistic and information system to handle
    Transfer in/Transfer out-- with records
  • Add retrospectively to cohort according to when
    started ART
  • Will become an increasing proportion of patients
    over time, with return to work, normal mobility
  • Restart after treatment interruption
  • When is restart permitted? Different
  • Deliberate treatment interruption in first
    trimester pregnancy
  • Lost or very poor adherence- ? Restart
  • Adjust if planned treatment interruptions later
  • Goes back into the same patient record (line in
    the register)
  • Number, weeks of each treatment interruption
    retained on card- could be used in special
  • Non-naïve patient on ART from other sources
  • Goes into HIV Care PreART register (queue in
    rationed system)- must qualify (determine that
    medically eligible) and be ready