Review Material Retention Brochure MD

about:

Regular,
Ongoing

Care

How medical providers
can help keep patients
engaged in HIV care

13_PIC_W3_Retention_MD_v6 12-4-13

SMALL TALKS

SMALL TALKS

about:

Regular,
Ongoing Care

helps patients lead
longer, healthier lives
Retaining patients in regular, ongoing care is an

important component of the continuum of care for
successful HIV management and is necessary for optimal
treatment of all HIV-infected persons, including patients not
yet taking antiretroviral therapy (ART).1,2

100%

Number and Percentage of HIV-Infected Persons
Linked to Care Who Are Retained in Care*3

80%
60%

(n = 725,302)

66%

40%
(n = 480,395)

20%
0%

Linked to HIV care

Retained in HIV care

*N = 1,178,350 persons 13 years old or older at the end of 2008.

Ongoing care, including initiating and monitoring ART, has
been proven to improve clinical and individual outcomes,
such as increased CD4 cell count, decreased viral load,
reduced morbidity, and improved mortality.4-6

Source: CDC. Vital signs: HIV prevention through care and treatment—United States. MMWR. 2011;60:1618-1623.

Definition of Retention in HIV Care:

Two or more outpatient visits (at least 3 months
apart) during each year of HIV treatment.7

2

But not all patients remain in care
HIV care is not always consistent, and some patients may
cycle in and out of care.8 Key demographic, social, and
disease-severity factors that can be predictive of patients
who drop out or do not remain in HIV care include:3,9-12

• Younger age (<25 years old)
• Female gender
• Racial or ethnic minority
• Lower socioeconomic status
• No usual source of health care
• Low readiness to enter care
• Public health insurance, change in insurance,
or no insurance
• Substance dependence
• CD4 cell count <200 or viral load >400 on ART

Awareness of these key factors can help providers identify
patients who may have challenges staying in care and guide
the overall approach to their treatment.

3

BRIEF CONVERSATIONS
Help Improve Outcomes by
Keeping Patients in Care
It is important for patients living with HIV to understand
that staying in medical care is crucial to short- and
long-term health.
Talking with patients at regular visits allows medical
providers to reinforce positive behaviors and uncover barriers
to successful treatment over the long term. A number of
studies have shown that brief conversations with patients
result in better outcomes.13-16 And, patients can be assured
that regular, ongoing care helps to improve clinical and
individual outcomes such as:4

• Better survival rates
• Increased CD4 cell count and decreased viral
load
• Increased likelihood of receiving ART
• Lower rates of ART failure
• Reduced risky sexual behaviors and HIV
transmission
• Decreased rates of hospitalization
• Improved clinical variables (such as blood
pressure, weight, or tobacco use)
• Reduced community-level viral burden, which
reduces community-wide risk for ongoing
HIV transmission.

4

Ongoing care results in higher CD4
counts and lower viral loads
In one study, patients who received ongoing, regularly
scheduled care (at least one visit in each 6-month period
over 2 years) had better outcomes than patients who
missed even one appointment within a 2- year period,
including:5
• Mean increase in baseline CD4 count was greater
in optimal retention compared with suboptimal
retention and sporadic retention in care (P<0.001
for each)
• Mean decrease in baseline viral load was
greater among those with optimal compared with
suboptimal or sporadic retention in care (P<0.001
for each).

Ongoing care results in better
survival rates
An increased risk of mortality was seen when patients
missed two or more visits over a 2-year period.5 In a
separate study, patients who missed visits in the first year
after initiating HIV treatment had more than twice the
rate of long-term mortality compared with those who
attended all scheduled appointments.6

5

SMALL TALKS
Lead to Teachable Moments
Brief discussions about the importance of ongoing care
can present teachable moments during which medical
providers can help motivate patients to continue with care
and/or make positive changes to improve their care.17

Make the most of teachable moments
The most effective teachable moments are short, direct,
nonjudgmental, and supportive in tone.
Successful teachable moments are those during which the
provider (1) helps the patient identify and explore their
barriers to ongoing care, (2) provides information needed
to motivate a patient toward a specific positive change,
and (3) obtains a patient response indicating a willingness
to discuss and commit to the behavior change.17
Here are some examples:
1. Exploring barriers:
• Patient: “I’m sorry I missed my last appointment.”
• Provider: “I’m happy to see you today. What was
going on when you missed your appointment?”

6

2. Offering modifiable health behaviors to motivate
the patient toward change:
• Patient: “Sometimes I’m afraid to come.
I don’t want to hear more bad news.”
• Provider: “You have been doing very well,
and if you continue to take care of yourself,
I expect this to continue. Would it be helpful
to have a friend or family member come to
appointments with you?”
3. Patient indicates willingness to commit
to behavior change:
• Patient: “I never thought of that. My sister
can probably come to appointments with me.”
• Provider: “That’s a great idea. I’d love to
meet her. Let’s make sure your next appointment
is convenient for both of you.”

7

HOW TO
Keep Patients in Care and
Connected
The medical literature offers numerous suggestions for helping
patients remain in ongoing care for HIV. These include:

Directly helping patients modify behaviors that lead
to poor retention in HIV care. 4,18 For example:
• Communicate with the patient in a nonjudgmental manner to elicit
information or skills related to retention that the patient might
lack, such as problem-solving skills.
• Guide the patient to identify possible changes that would eliminate
or reduce the barrier.
• Strategize with the patient to identify new goals and healthy
behaviors.

Fostering patient trust. For example:
• Trust is a cornerstone of health care management and helps
remove the stigma associated with HIV care.4
• Trust-building comes from simple actions, such as asking patients
how they prefer to be addressed or explaining why certain
questions are being asked.19
• Being direct, nonjudgmental, and supportive helps foster
patient trust.

8

Allowing open communication and
collaborative decision-making. Such as:
• Encourage patients to recognize and use their own abilities to
access resources and solve problems.20
• Use open-ended questions to encourage patients to participate
actively in their management plan.21
• Encourage discussions on subjects including substance use, sexual
behavior, and mental health.4
• Provide referrals when needed, and assess patient willingness to
complete the referral.22
-- Outreach workers, peer counselors, and treatment advocates
can also assist patients with referrals.22

Demonstrating interest in addressing barriers to care,
including structural barriers. Examples include: 4,20
• When possible, extend office hours or offer more flexible
appointment times one or more days per week (eg, offer some
walk-in or same day appointments).
• Maintain accurate patient contact information and update at
every visit.
• Use patient-tracking systems to determine whether
a patient has dropped out of care; contact patients to reschedule
missed appointments.
• Help patients find resources to address unmet needs and barriers
to care, such as lack of transportation, housing, and child care.
• When possible, connect patients with services such as child care
and transportation services and offer co-location of primary care
and social services.20
-- Health department HIV/AIDS programs can provide
information on accessing these services.22
• When warranted, encourage patients to access substance use or
mental health services.

9

START SMALL…

The following are suggested conversation starters for
discussions about ongoing, regular care.

For new patients, set the stage for longterm care:
“It’s important that you come to your medical appointments
regularly so I can monitor your progress and help you stay
healthy. Let’s talk about what that means.”
“I know it can be difficult to keep all your appointments, but
it’s very important. What can we do to make sure you keep
your next appointment?”
“I’m looking forward to seeing you on a regular basis.”

For patients who regularly attend
appointments, keep them motivated:
“You’re looking well today, and I’m pleased that you’ve been
coming in so regularly.”
“Thank you for doing such a good job of keeping your
appointments. It makes it easier for us to work together to
keep your HIV virus under control.”

For patients who keep appointments
inconsistently, be supportive:
“There is proof that people with HIV do better overall
when they come to their appointments on a regular basis.
How can we make this happen for you?”
“I need your help to keep you healthy. When you come
to your appointments to see me, we can work together to
make you as healthy as possible.”
“So let’s talk about what has been keeping you from coming
to see me.”

10

Brief discussions with patients at every office
visit help build relationships that keep patients
engaged in their own care over the long term.

References
1. Cheever LW. Engaging HIV-infected patients in care: their lives depend
on it. Clin Infect Dis. 2007;44:1500-1502. 2. Marks G, Gardner LI, Craw J,
Crepaz N. Entry and retention in medical care among HIV-diagnosed persons:
a meta-analysis. AIDS. 2011;24:2665-2678. 3. CDC. Vital signs: HIV prevention
through care and treatment—United States. MMWR 2011; 60:1618-1623
4. Giordano TP. Retention in HIV care: what the clinician needs to know.
Topics Antiviral Med. 2011;19:12-16. 5. Tripathi A, Youmans E, Gibson
JJ, Duffus WA. The impact of retention in early HIV medical care in viroimmunological parameters and survival: a statewide study. AIDS Res Hum
Retroviruses. 2011;27:751-758. 6. Mugavero MJ, Lin HY, Willig JH, et al. Missed
visits and mortality among patients establishing initial outpatient HIV treatment.
Clin Infect Dis. 2009;48:248-256. 7. Mugavero MJ, Davila JA, Nevin CR, et al.
From access to engagement: measuring retention in outpatient HIV care. AIDS
Patient Care STDS. 2010;24:607-613. 8. Christopoulos KA, Das M, Colfax
GN. Linkage and retention in HIV care among men who have sex with men
in the United States. Clin Infect Dis. 2011;52(Suppl 2):S214-S222. 9. Boyles
TH, Wilkinson LS, Leisegang R, Maartens G. Factors influencing retention in
care after starting antiretroviral therapy in a rural South African Programme.
PLoS ONE. 2011;6:e19201. 10. Zhu H, Napravnik S, Eron J, et al. Attrition
among human immunodeficiency virus (HIV)-infected patients initiating
antiretroviral therapy in China, 2003-2010. PLoS ONE. 2012;7:e39414.
11. Gerver SM, Chadborn TR, Ibrahim F, et al. High rate of loss to clinical
follow up among African HIV-infected patients attending a London clinic: a
retrospective analysis of a clinical cohort. J Int AIDS Soc. 2010;13:29. 12. Mayer
KH. Introduction: Linkage, engagement, and retention in HIV care: essential
for optimal individual- and community-level outcomes in the era of highlyactive antiretroviral therapy. Clin Infect Dis. 2011;52(Suppl 2):S205-S207. 13.
Richardson JL, Milam J, McCutchan A, et al. Effect of brief safer-sex counseling
by medical providers to HIV-1 seropositive patients: a multi-clinic assessment.
AIDS. 2004;18:1179-1186. 14. Gardner LI, Marks G, O’Daniels CM, et al.
Implementation and evaluation of a clinic-based behavioral intervention:
positive steps for patients with HIV. AIDS Patient Care STDS. 2008;22:627635. 15. Rose CD, Courtenay-Quirk C, Knight K, et al. HIV intervention for
providers study: a randomized controlled trial of a clinician-delivered HIV
risk-reduction intervention for HIV-positive people. J Acquir Immune Defic
Syndr. 2010;55:572-581. 16. Patel P, Bush T, Mayer K, et al. Routine brief
risk-reduction counseling with biannual STD testing reduces STD incidence
among HIV-infected men who have sex with men in care. Sex Transm Dis.
2012;39:470-474. 17. Cohen DJ, Clark EC, Lawson PJ, et al. Identifying
teachable moments for health behavior counseling in primary care. Patient
Educ Couns. 2011;85:e8-15. 18. Cornman DH, Christie S, Amico KR, et al.
Options Intervention Protocol Manual. A Step-by-Step Guide to Risk Reduction
Counseling with PLWHA. Storrs, Conn: University of Connecticut. 2007:1-111.
19. Cichiki M. Liviing with HIV. A Patient’s Guide. Jefferson, North Carolina:
McFarland & Co., Publishers; 2009. 20. Higa DH, Marks G, Crepaz N, et al.
Interventions to improve retention in HIV primary care: a systematic review of
U.S. studies. Curr HIV/AIDS Rep. 2012;9:313-325. 21. Duffus WA, Ogbuanu
IU. Prevention counseling for HIV-infected persons: what every clinician needs
to know. Curr Infect Dis Rep. 2009;11:319-326. 22. Centers for Disease
Control and Prevention, Health Resources and Services Administration, National
Institutes of Health, HIV Medicine Association of the Infectious Diseases
Society of America. Incorporating HIV prevention into the medical care of
persons living with HIV: recommendations of CDC, the Health Resources and
Services Administration, the National Institutes of Health, and the HIV Medicine
Association of the Infectious Diseases Society of America. MMWR 2003;52(RR12):1-24.

11

Helping Patients Participate
in Regular, Ongoing Care

Inside

For optimal clinical benefit, HIV-infected patients should receive
regular outpatient care indefinitely.
This brochure provides:
• Evidence of the importance of regular, ongoing care
• Proven strategies to engage patients in ongoing care
• Conversation starters to allow medical providers to discover
modifiable barriers to reduce the number of missed appointments.

Additional materials available in this kit
To help encourage brief discussions about barriers to and strategies for
ART adherence, the following materials are also included in this kit:
Medical providers should make every effort to ensure
that their patients adhere to ART by using the
following truisms and suggestions:

• Consider writing the first prescription for ART only when a medical provider
is confident of his or her patient’s self-motivated commitment to starting
treatment.

• Adherence is essential to achieve the primary goal of treatment—

maximal and durable reduction of viral load.

• Assess a patient’s adherence readiness by prescribing a regimen of vitamins/
nutritionals (or even placebo pills) as a “practice run” and then determining
by inquiry and other measures how well the patient was able to adhere to
this regimen.

• Medical providers should not simply assume that patients will

what happened and why you missed some doses” can elicit specific
details including when, why, and how the doses were missed, which in
turn helps identify potentially preventable contributory factors
and can open a dialog about adherence generally.

• Assess adherence at every visit following initiation of the ART regimen
by asking simple, direct, open-ended questions that offer patients the
opportunity to respond honestly about their adherence challenges, such as:

missed any meds, have you?” can be perceived as accusatory and
chastising and should be avoided.

— “How many times did you miss your meds last week?”

• Patients who sense their medical provider’s disapproval of nonadherence

❑ Adherence to medication
❑ Reducing risky sexual behaviors
❑ Remaining in medical care
❑ Yes

Medical Provider:

❑ None of these topics (patient refused)
❑ None of these topics (other issues took precedence)
❑ Other

❑ No

❑ No (Today is patient’s first visit)

Was a goal set with the patient at a previous visit?

❑ Medication adherence
❑ Reducing risky sexual behaviors
❑ Other:

❑ Today is patient’s first visit
❑ Attending all medical visits

What is the patient’s progress on previous goal:

❑ No goal set at previous visit
❑ No progress on previous goal

❑ Partially achieved previous goal
❑ Fully achieved previous goal

What barriers (if any) did your patient identify during this visit?
ART Adherence

❑ Experiences side effects from ART
❑ Forgets to take medications
❑ Experiencing treatment fatigue

❑ Forgets to pick up prescriptions
❑ Cannot pay for medication
❑ Other:

Reducing
Risky Sexual
Behaviors

❑ Lacks information about safe sex
❑ Does not have access to condoms
❑ Unaware of PrEP and PEP

❑ Uncomfortable discussing safe sex with partners
❑ Experiencing prevention fatigue
❑ Other:

Remaining in
Medical Care

❑ Feels too sick to attend appointments
❑ Does not believe medical care is necessary
❑ Lacks access to transportation
❑ Other:
❑ Is concerned about seeing family/friends at clinic

Other Barriers

❑ Mental health issues
❑ Homelessness
❑ Substance abuse:

❑ Lack of social support
❑ Financial concerns
❑ Other:

What does the patient state is his or her primary barrier to achieving optimal health?
Did you and the patient discuss a plan to overcome this barrier?

❑ Yes

❑ No

What is the plan (or goal) that the patient agrees to work on before the next visit:
Referrals:

❑ Case management
❑ Partner services
❑ Mental health services
❑ Substance use services

❑ Prevention counseling
❑ Reproductive health planning
❑ Domestic violence prevention services
❑ Food services

❑ Housing services
❑ Financial services
❑ Support groups
❑ Other:
Source: Adapted from Options Patient Record Form

14_PIC_W3_Patient_Record_Form_v11 12-4-13

PATIENT RECORD FORM

Did you set a goal with patient at previous visit?

IN ART ADHERENCE

Care IS Prevention

Prevention Is Care:

What topics were discussed with your patient during today’s visit?

… options for
safer sex
… how to reduce
side effects from
medicines

… You are thinking about having
kids and want
some advice
… healthy ways to
deal with depression
and anxiety

These are all examples of topics
you can talk about with your
medical provider. Together, you
can set a goal – something
you want to work on or
change between now and your
next medical visit to help you
overcome challenges like these.

We believe you can
achieve your goal and
protect your health.

… getting help with
alcohol or drug use.

myAction
Plan

• Patient Record
Form — serves as
a guide to (and
documentation of)
conversations about
regular, ongoing care
and helps providers
identify patients at
risk for dropping out
of care

Write your goal and
the steps you’ll take
to reach that goal
on this Action Plan.

At your next medical
visit, talk to your medical
provider about progress
you’ve made and ask for
support if you’ve had any
roadblocks to success.

Date of visit with medical provider:
Issue we discussed:

Solution I agreed to try:

Date of next appointment:

Remember… change is an ongoing process.
Understand that you may make mistakes along the way.
Don’t be afraid to ask for help from friends and family.
Care IS Prevention

22_PIC_W3_Retention_Posterv1 12-4-13

Small Talks

IN ART ADHERENCE
Care IS Prevention

Maybe you have
questions about
healthy living
and healthy
relationships…

… You’re dating
someone new, but
haven’t talked to
them about STDs
or HIV yet

LET’S TALK about

8

30

21

10

Keeping All
OF YOUR MEDICAL APPOINTMENTS

Care IS Preve
n

Protect yourself.
Protect others.

LET’S TALK about

8

30

21

10

Keeping All
OF YOUR MEDICAL APPOINTMENTS

15.RetentionPatientAid_v11 12-4-13

who report taking medications daily on a regular basis—whether there
has been a period of time when their medication was not affordable
and therefore was missed.

Source: Hardy WD. The art of ART adherence. HIV Specialist. Fall 2012.

Patient Name/ID:

… You recently
moved and are
having trouble
getting to medical
appointments

are less likely to provide accurate, truthful information.

• Medical providers should routinely ask their patients—including patients

Appointment Date:

… A new job is
making it hard
to stick to your
medicines schedule

• Probing adherence with judgmental questions such as “You haven’t

— “Which doses are the most difficult for you to remember to take?”

This form can be used as the basis for discussions with patients
about barriers to achieving optimal health and as a checkpoint for
future visits. Information elicited may inform an Action Plan that
can help patients achieve their goals.

Each Medical Visit…
and the Time Between Visits

Every medical visit gives you a chance to talk with your medical provider about
getting healthy, staying healthy, and keeping others safe.

continue to adhere to ART indefinitely, even if their viral load results
suggest this.

• If doses have been missed, follow-up inquiry such as “Let’s talk about

• Strongly consider deferring the initiation of ART by a newly diagnosed
HIV-infected patient until he or she is assessed for anxiety and depression
(which can seriously undermine adherence) and the diagnosis is accepted.

Small Talks

Make the Most of

Maybe something
in your life
changed since
your last visit…

10_PIC_W3_Action_Plan_v16 12-3-13

Highlights from

The Art of ART Adherence
as published in HIV Specialist

5_PIC_W3_Hardy Reprint Carrier_v7 12-4-13

• Reprint of Gardner
et al. A LowEffort, Clinic-Wide
Intervention
Improves Attendance
for HIV Primary
Care — provides
evidence that brief
conversations work to
help patients receive
ongoing, regular care

W. David Hardy, MD

• Action Plan — used
by you and your
patient at each
visit to identify and
address modifiable
barriers affecting
regular, ongoing care
• Keeping All of
Your Medical
Appointments
wall poster — 
helps foster open
communication
• Keeping All of
Your Medical
Appointments
brochure —
reinforces your
health messages
after patients leave
their appointments

Additional materials
• HIV Resources for Providers Who Deliver Care to People Living with
HIV— provides a comprehensive selection of available resources [url
to come]
• Partner Services Provider Overview and Patient Education (brochure
and wall posters)—explain the Partner Services process and help
patients access these services via the health department [url to come]
http://www/cdc/gov/actagainstaids/pic/

Care IS Prevention