Module 7

Retention in Care for HIV-

Infected Pregnant and
Breastfeeding Women and
their Infants
 Background
 Retention in care is essential to ensuring the best possible outcomes for HIV-
infected mothers and their infants.
 Many factors can influence whether a woman remains in care including
individual factors, community and cultural factors and health system factors.
 The nurse should be aware of the barriers to retention in care and respond in
ways that reduce those barriers.
 The nurse should be able to monitor the patient register and calculate
retention rates in order to determine the effectiveness of PMTCT services.
 Finally, the nurse should provide appropriate referrals and linkage to care to
ensure the HIV-infected woman remains in care outside of the MCH setting
after the point of final infant diagnosis.
 LEARNING OBJECTIVES:
 After completing this session, you should be able to:
 Define retention in care and explain why it is critical to ensuring the
best outcomes for HIV positive pregnant and breastfeeding women
and their infants.
 Determine appropriate dates for scheduling follow-up appointments
based on care and treatment needs and convenience.
 Identify risk factors for loss to follow-up at the individual,
community, and health systems levels.
 LEARNING OBJECTIVES:

Describe intervention strategies for responding to risk factors at

the individual, community, and health systems levels in order to
support and promote retention.
 Describe how to document and monitor patient follow-up
through use of an appointment book and register.
 Calculate retention rates using information on a patient register.
 Explain strategies and processes for linkage to lifelong HIV care
and treatment services.
Competency 1: Promote retention in care of HIV infected
pregnant and breastfeeding women and their infants in MCH
care settings.
 Retention
 Retention in care can be defined as maintaining a connection between the
patient and the health care system, allowing for ongoing follow-up care and
treatment, counseling and support.
 Pregnant and breastfeeding women who test positive for HIV should ideally
be established in care and initiated on ART in MCH settings and retained
throughout the period of breastfeeding so that mother and infant care can be
coordinated.
 After breastfeeding ends, these women should be referred for ongoing care
and continuation on lifelong ART in adult HIV care and treatment settings.
 Retention
 HIV-exposed infants should be established in care in
MCH settings and retained in MCH until a final HIV
infection status is determined at 18 months of age or 6
weeks after breastfeeding ends.
 Infants who become HIV-infected should be referred for
initiation of ART and ongoing care in pediatric HIV care
and treatment settings as quickly as possible as per WHO
guidelines.
 Schedule an appointment date considering
the reason for follow-up
 Appointments for follow-up for the HIV positive
pregnant or breastfeeding woman and her HIV
exposed infant should be scheduled at appropriate
times according to the reason for follow-up. Refer
to local guidelines to schedule appointments for
follow-up. Common scheduling times are as
follows:
 Refill ARVs: Schedule follow-up appointments for HIV positive
pregnant and breastfeeding women to refill ARVs at 2 weeks
after initiation and every 1-3 months thereafter. Give the next
appointment date at least 7 days before ARVs are finished to
ensure women will not run out of ARVs.
 Routine follow-up: Schedule HIV-exposed infants to return at 6
weeks, 10 weeks, 14 weeks, 6 months, 9 months, 12 months,
and 18 months of age for routine care including CTX, growth
monitoring, developmental assessment, clinical assessment,
counseling on infant feeding, and immunizations.
  Lab tests: Schedule HIV-exposed infants to return for
diagnostic HIV testing 4-6 weeks after delivery, again at
9 months of age, and finally at 18 months of age or 6
weeks after breastfeeding ends. Schedule HIV positive
pregnant or breastfeeding women initiated on ART to
return for viral load or CD4 testing 6 months after
initiating ART where available.
 Health Problem: Encourage HIV positive pregnant or
breastfeeding women and infants to return at any time for a
health problem of the woman or infant
 Schedule an appointment date
considering convenience
 Work around the standard follow-up schedule to determine an
appointment date and time individualized to the HIV positive
pregnant or breastfeeding woman and her infant’s needs to
ensure best results for retention in care. Consider the following:
 Synchronize mother and infant care: Do your best to
schedule the mother and baby’s appointments together (on the
same day).
 Availability: Be sure to schedule the appointment around
days that the woman will be available, such as days when she
is not working or busy with childcare or other commitments.
 Time with drug pick-up: Coordinate the follow-up clinical
visit appointments with drug dispensing. If the follow-up
visit is two months away, provide the woman with a 60 day
supply of pills.
 Reminder Cues: Consider days that will be easy for the
woman to remember, such as market days or the first day
after a weekend.
 Provide client education for follow-up
 Explain to the woman the date and reason for the follow-
up appointment and ask her to repeat the information
back to you to ensure that she understands.
 Provide the woman with an appointment card to remind
her of her next appointment.
 Be sensitive to the woman’s confidentiality and do not
include any details of her health status on the card.
 Document contact information for follow-up
 Fully document the woman’s contact information so that
you can follow-up with her through a text (SMS)
message or coordinate a home visit to ensure she keeps
her scheduled appointment.
 Include the woman’s name, address, and telephone
number. Also document the name, address, and
telephone number for the woman’s treatment supporter.
 The treatment supporter may include a partner, parent, sibling,
friend, or a community outreach worker.
 This person should be contacted in case the woman cannot be
reached.
 If the woman is ill and cannot attend an appointment, this person
may pick up her medication.
 In addition to documenting the woman’s contact information on
the patient card, document the scheduled appointment in a register
or appointment book so that you can track who is expected to come
for an appointment on a given day.
 Loss to Follow-Up
 When a patient is not retained in care we say they are lost
to follow-up (LTFU).
 HIV positive pregnant and breastfeeding women and their
infants may be lost to follow-up:
 After testing, if they do not get their results or get them
late.
  At the time of diagnosis, if they are not offered
appropriate treatment immediately.
 If they choose not to initiate or delay initiation of their
treatment.
 After initiation if they interrupt care or stop altogether.
 Any transfer or referral within or outside the health
facility can put the woman at risk for being lost to
follow-up. Tracking referrals and transfers is essential.
 Risk Factors for Loss to Follow Up
 Three levels of risk factors may contribute to loss to follow up for HIV
positive pregnant and breastfeeding women and their infants:
 Individual risk factors: Personal limitations on willingness and ability
to seek care.
 Community and cultural risk factors: Barriers within the family or
society that discourage the woman’s access to care.
 Health system risk factors: Challenges posed by health facilities and
healthcare providers that inhibit the delivery of services.
 Assess Individual Risk Factors
 Young age: These women may be more dependent
on others to access care.
 Low education or illiteracy: These women may not
be able to read written instructions for their care and
may not be able to interpret numbers on an
appointment calendar.
 Physical or mental illness: Symptoms related to ART, pregnancy,
or other physical illnesses can make travelling to the clinic
difficult. Mental health illnesses including depression can make
keeping appointments difficult.
 Feeling well or asymptomatic: Women who do not feel sick may
not recognize the need for continuing on ART and may not be
motivated to stay in care after delivery and breastfeeding.
 Forgetting: Women who are pregnant or caring for a new baby
may have competing priorities and stress that can cause them to
forget to keep appointments.
 Respond to Individual Risk Factors
 Engage family and refer for support
 Tailor patient education
 Provide treatment or referral and counsel on common
side-effects
 Counsel on the rationale and benefits of ART Provide
appointment reminders
 Assess Community and Cultural Risk Factors

 Lack of social support

 Lack of childcare or ability to take off work
 Stigma and discrimination
 Distrust of clinic, doctors, or biomedicine
 Respond to Community and Cultural Risk
Factors

 Counsel on disclosure and identify a treatment supporter

 Schedule appointments that are convenient
 Protect patient confidentiality
 Provide information, dispel myths
 Assess Health System Risk Factors
 Poor linkage between services
 Limited access to care
 Long wait times
 Poor health worker knowledge and attitudes
 Delayed diagnosis and treatment
 Drug stock-outs
 Poor patient tracking
 Respond to Health System Risk Factors
 Integrate HIV care and treatment services in MCH settings:
 Community-based care and referral:
 Education and training, mentorship, and supportive supervision:
 PITC and treatment initiation regardless of CD4 result:
 Supply chain management:
 Document and monitor patient register
Competency 2: Monitor retention in care and calculate retention rates
for HIV infected pregnant and breastfeeding women and infants.
 Monitoring Program Effectiveness
 To understand the effectiveness of your PMTCT program you need to think about
what happens to the women and infants who come to your clinic.
Some of the questions you might ask about your program include:
 How many of the women who test positive for HIV begin ART?
 How many of the women who start ART continue and for how long?
 How many of the infants born to women in the program become infected with HIV?
 All of these questions are important, but the most commonly measured indicator of
program quality is the “retention rate” for women who start ART.
 Understanding Retention Rates
 To monitor the effectiveness of your treatment program for HIV
positive pregnant and breastfeeding women, you need to know
how many of them are staying in care and coming back for
treatment.
 Regular reviews of the ART register or patient chart will help
you monitor retention and identify problems or issues with your
clinic or the community in which you work that need to be
addressed.
 Since the recommendation is for these women to stay on ART
for the rest of their lives, the retention rate can be calculated for
any period of time from one month to many years after initiation
and will include women who are no longer pregnant or
breastfeeding.
 This is also called a cohort analysis since each group of women
who initiated ART in a given month is called an ART initiation
“cohort”. A cohort can be defined as a group of people that have
something in common. In this case these are HIV positive
pregnant or breastfeeding women who all start treatment on the
same month.
 Calculating Retention Rates
 Retention rates are calculated as a percent: What percent of women
who started ART while pregnant or breastfeeding are still on ART and
coming to the clinic one month, 3 months, 6 months, 9 months, and 12
months after they initiated ?
 The numerator is the number of women who initiated ART while
pregnant or breastfeeding in a given month who are still documented
as being in care and on ART.
 The denominator is the total number of pregnant or breastfeeding
women who initiated ART in the cohort.
 Analyzing Retention Rates
 Clinics should review their retention rates regularly as part of their quality
improvement activities.
 A perfect retention rate is impossible given normal population movement,
illness and death, but the higher the retention rate the better.
 Over time it is expected that the cohort’s retention rate will decline, but a
sudden or steep decline should be investigated.
 Many programs have achieved retention rates of around 75% at one year.
That means that 75 out of 100 HIV positive women who started ART when
pregnant or breastfeeding were still in care and on ART 12 months after
they started.
 Retention Rates
 Retention rates are calculated as a percent: “What percent of
pregnant and breastfeeding women who started on ART in
the cohort returned to the clinic for follow-up by a specified
time point (1 month, 3 month, or 12 months)?”
 A percentage is calculated as numerator (n) divided by a
denominator (d) multiplied by 100. Retention rate %=n/d x
100
 The denominator (d) is the number of pregnant or breastfeeding
women who started ART in the cohort. Note: Women who transfer in
after having started ART earlier are not counted in the cohort for
when they transferred in but rather in the cohort month when they
started ART. Women who transfer out before the month of follow up
are not counted.
 The numerator (n) is the number of pregnant or breastfeeding
women who started ART in the cohort and remain in care at
designated time point of follow up.
 Note: Women who transfer out before the month of follow up are not
counted.
 Competency 3: Arrange for linkage to lifelong HIV care and
treatment services for HIV-infected women and infants after the
period of breastfeeding and the definitive infant diagnosis.
 Linkages to HIV Care and Treatment
 After the woman has completed breastfeeding and the infant is diagnosed, the
mother should be referred to continue with lifelong ART outside of the MCH
setting.
 Regardless of when or how a referral or transfer out of the MCH clinic occurs,
steps need to be taken to ensure that the woman has all the information she
needs and that the site to which she is being referred or transferred receives all
the necessary information.
 Strategies to Ensure a Successful Referral for On-going Care
 Begin preparing the woman for transfer well in advance.
 Review her experiences with ART to date and address her concerns about continuing ART.
 Identify an ART clinic that is convenient for her and consider resources such as peer groups, support
services, and transportation.
 Ensure all documentation is complete, including all treatments, so that the on-going clinic can provide the
best care possible.
 Provide the woman with up to date contact information, service hours, and staff names.
 Ask the woman if she has any concerns about transferring to the ART clinic and try to address them.
 Provide the ART clinic with correct patient contact information and even schedule the appointment.
 Escort the client to the HIV clinic if it is in the same facility