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A
Guide To Primary Care For
People With HIV/AIDS, 2004 edition |
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Chapter
16
Clinic Management
Jonathan
Allen Cohn, MD, MS, FACP
Patient
Recruitment and Retention
TOP
How can
primary care clinics recruit patients with HIV into care?
The persons
who were easy to recruit and retain in care are already enrolled;
the more challenging patients await recruitment. Every clinic should
1) be linked to agencies providing HIV testing and services for
persons with HIV and 2) make clinic access easy for the clients
of those outside services.
Many clinics
establish referral linkages with community services that provide
HIV counseling and testing services (CTS), AIDS service organizations
(ASOs), STD treatment facilities, family planning agencies, drug
treatment facilities, local health departments, regional HIV/AIDS
hotlines, and local hospitals and emergency rooms. Many clinics
also offer free confidential or anonymous CTS using State or Federal
funding.
Clinic personnel
should build personal relationships with agencies that may provide
referrals, invite staff of community agencies to visit the clinic,
or hold an open house. Providers from ASOs, such as case managers,
can be invited to accompany patients on clinic visits. Referring
agencies must know what services the clinic provides and which patients
it serves, as well as those it cannot serve. Clinics with Ryan White
Care Act (RWCA) funding should be able to accept patients regardless
of health insurance or ability to pay. Primary care clinics can
benefit from having a brochure describing their programs and array
of services, along with information about making appointments, hours
of service, and so forth.
Clinics differ
based on the characteristics of the people living in their catchment
area and the expertise of clinic staff. Some successful clinics
target a narrow but underserved population and concentrate on meeting
the needs of that population. A youth-friendly environment may differ
from one targeting the working poor.
How do clinics
retain patients in care?
Respect,
cultural competence: Respecting patients and providing them
with effective care builds trust and keeps them coming back. New
clinic attendees may have strong feelings related to HIV infection
(fear of death) or how they acquired it (issues of shame or of secrecy).
They may lack trust in medical care (prior personal experiences
or the legacy of the Tuskegee syphilis experiments) or in current
treatments ("Everyone I knew who took AZT died
").
Patients encounter barriers where there are cultural differences
or language barriers between themselves and the staff. Staff members
should be trained to anticipate, recognize, and work with these
issues.
Welcoming
staff attitude: Patients should always be made to feel that
they came to the right place (even when it is not true, and they
must be referred on). Patients should receive understanding and
support, even when they arrive in clinic without obtaining the required
managed care referral form (at least the first few visits). Providers
must know the target population and build a system that will make
patients feel welcome. Many RWCA-funded clinics employ patient advocates,
persons from the target community who may or may not themselves
be HIV-infected. Advocates directly assist patients in negotiating
the clinical care system and help patients ask questions or make
their needs known to clinical staff. Advocates or peer support persons
can be instrumental in helping patients build self-esteem and acquire
new habits that will enable them to use health care services in
a proactive manner. It is very helpful for patients to be able to
forge a personal connection with at least one staff member.
Welcoming
environment: Physically comfortable waiting and examination
areas, with linguistically and culturally appropriate decoration
and reading material, are important for patient retention. A clinic
that serves parents or children should make available toys or children's
books.
Orientation
to clinic systems and rules: New patients need a brief description
of clinic staff and services, routine and emergency procedures,
prescription refill procedures, and after-hours followup. They must
understand about requirements for referrals from managed care providers,
and new patients may need help with such requirements. Patients
must also be oriented to what is expected of them (eg, coming on
time, calling to cancel or reschedule appointments) and the consequences
of not fulfilling their responsibilities (eg, clinic rules regarding
late arrivals). A handout or pamphlet with staff names, clinic hours
and phone numbers, and emergency procedures can be very helpful.
Systems
to support attendance: Patients should receive reminders (by
phone or mail) about 48 hours before each appointment. It is also
useful to have a staff member contact patients who have missed appointments
to find out what prevented them from attending and offer to reschedule.
ASOs may have funding for transportation (eg, door-to-door taxi
service for selected patients, van service, vouchers for use on
public transportation). Other barriers may require a coordinated
effort by the clinic staff, case manager, and others. Clinic sessions
should be scheduled at times convenient for the patients; mid-to-late
afternoon is best for school-age children, occasional evenings or
weekends are good for working people.
Clinical
Services Needed for HIV Care
TOP
What is
the optimum array of services that an HIV clinic should provide?
All patients
with HIV need a similar array of services that must be provided
either directly or through referral. Patients need providers knowledgeable
in the diagnosis and treatment of HIV infection and its complications,
including state-of-the-art use of antiretroviral therapy (ART).
Services must address the clinical conditions associated with patients'
current or prior risk behaviors. Given improved life expectancy,
patients need age-appropriate general preventive and screening services.
The high rates of premorbid mental health problems in persons with
HIV and mental health problems related to HIV disease make mental
health services a key component of HIV care. Substance abuse treatment
is crucial. Confronting the epidemic by including HIV prevention
activities in clinical care sites is a new activity, challenging
and critically important (see Chapter 4).
The HIV/AIDS
Bureau of the Health Services and Resources Administration (HRSA)
lists basic services required for agencies to receive funding through
the RWCA Title III (Early Intervention/Primary Care) Program (Table
16-1). Some States have produced more detailed lists for agencies
wishing to receive special State-level funding for HIV care; see
the New York State list for comparison (Table 16-2). Funded programs
generally must demonstrate continuity in primary care, 24-hour access
to emergency care, ongoing staff training, an administrative apparatus
adequate to manage the program and its funding, a reporting system
to meet the grantors' requirements, and quality management. Programs
that do not receive explicit funding for clinical care and/or support
services need to rely more on referral networks.
Table 16-1:
HIV/AIDS Bureau Requirements for Title III-funded Early Intervention/Primary
Care Programs
- HIV
counseling, testing, and referral
- Counseling
and education on living with HIV disease, including availability
and use of treatment therapies
- Appropriate
medical care and monitoring, including CD4 cell monitoring,
viral load testing, antiretroviral therapy, and prophylaxis
and treatment of opportunistic infections, malignancies,
and other related conditions
- Oral
health care, outpatient mental health care, substance abuse
treatment, nutritional services, and specialty care either
directly or through a formal referral mechanism
- Appropriate
referrals for other health services
- Perinatal
care including therapy to reduce mother to child transmission
(MTCT)
- Screening/treatment
of TB
|
Source: Adapted
from Ryan White C.A.R.E.
Act Title III Manual. Rockville, MD: HIV/AIDS Bureau, Health
Resources and Services Administration. 1999(Section II):5. Accessed
2/04.
Monitoring
and treating the long-term complications of ART, such as insulin
resistance, lipodystrophy syndromes, dyslipidemia, and osteopenia,
are of increasing importance. Instituting formal activities to assist
patients in behavior change is increasingly recognized as an essential
component of HIV care. Hepatitis C diagnosis and management are
of particular importance for patients who have had blood product
exposures or who were drug injectors. Screening for premalignant
human papillomavirus (HPV) disease in men using anal Pap smears
is potentially valuable, although it has not become a universal
standard of practice.
Clinics should
also have a system in place to protect the safety of their employees
in regard to occupational HIV exposure (See Chapter 10 as well as
Suggested Resources below).
Table
16-2. Comprehensive Ambulatory HIV Programs
from the New York State AIDS Institute
Clinical
services that must be provided
by ambulatory HIV programs
On
site
- Age
appropriate, confidential HIV counseling and testing
- Initial
and annual comprehensive medical evaluations, including
substance abuse and mental health assessments
- Cognitive
function testing
- Ongoing
clinical HIV disease monitoring
- HIV-specific
therapies and prophylactic treatments, including treatment
education and adherence monitoring
- Routine
gynecologic care and followup (including reproductive
counseling, pelvic examinations, and Pap smears)
- Routine
family planning services
- Case
management
- Patient
health education, including risk reduction and nutrition
counseling
On
site or via linkage
- Access
to consultations by specialists in infectious diseases
- Core
diagnostic and therapeutic services
- laboratory,
including early diagnostic methods to establish the
infection status of children
- radiology,
including MRI
- pharmacy
- dental
services
- mental
health services, including clinical social work, clinical
psychology, and psychiatry as clinically appropriate
- Other
primary care, specialty, and subspecialty services
- obstetrics
- pediatrics,
adolescent medicine, and pediatric subspecialties
- ophthalmology
- dermatology
- outpatient
surgery
- clinical
pharmacy
- subspecialties
of internal medicine, including gastroenterology,
hematology, pulmonology, and oncology
|
Source: New
York State AIDS Institute. Comprehensive Ambulatory HIV Program
Standards. Part 490 of Title 10 NYCRR. November 1994.
What is
different about providing HIV care compared with other types of
medical care?
HIV care is
new; the epidemic was recognized in 1981, and potent therapy became
available in 1996. Therapeutic options are much improved, but there
is little room for error. Drug resistance may occur rapidly and
is irreversible. The ongoing development of new therapeutic agents
is impressive, yet is not rapid enough to ensure future therapies
to persons who received inappropriate prescriptions, or who did
not receive the requisite education, support, and counseling to
succeed with their therapy. With therapies that have been in use
for less than 10 years, much is still unknown about long-term outcomes.
Juxtaposed
against the need for expertise in HIV care is the need to expand
access. The only prerequisite to developing expertise in HIV care
is commitment. A wide range of providers may be the HIV experts
for their communities: midlevel practitioners and physicians, generalists
and subspecialists. Providing infected persons with the tools to
succeed in their treatment and to avoid future HIV transmission
may require stepwise behavior change. A persistent and nonjudgmental
approach is most likely to be effective (for more on adherence see
Chapter 7). Providers may have to change their own behaviors so
they can be more effective in patient care.
Most persons
receiving HIV care reduce their transmission behaviors, lowering
the risk of HIV infection for others. Others do not change their
behaviors, or do so only partially, or relapse. Providing prevention
interventions in a clinic protects the public health. Clinic staff
may know sex and drug using partners of patients, and find themselves
with a duty to warn those who may be unknowingly exposed. These
issues will be familiar to those in tuberculosis and STD treatment
settings; but for many these challenges are new (see Chapter 4 on
HIV prevention and Chapter 13 on substance abuse).
HIV/AIDS is associated with discrimination and stigma because of
its association with sexual behavior and with drug injection, and
because HIV is incurable and may still be eventually fatal. Historically,
there has been discrimination because of fear of contagion based
on misconceptions regarding transmission. Discrimination may still
be encountered in families and communities experiencing HIV for
the first time.
What can
clinics do to ensure that patients receive the necessary array of
services?
Clinic forms
can be designed to remind providers of care standards, simplify
data collection, and serve other purposes as well. Sample forms
for initial and followup visits are posted on the HRSA HIV/AIDS
Bureau (HAB) website (http://www.hab.hrsa.gov). They include reminders
regarding clinical standards, reminders of services required for
billing levels, checklists built around definitions used by RWCA
grantees for reporting to HRSA, and other data for quality management.
Staff members may rebel when confronted with new forms; however,
using checklists often saves time by listing required elements of
the visit and by reducing the amount of writing. Including clinical,
data, and quality management staff in the process of designing forms
eases the transition.
Information
systems can produce reports useful to providers, for example listing
a patient's prior diagnoses, medications, and sequential plasma
HIV RNA levels and CD4 cell counts (see again the HAB website for
examples). Similar flow sheets can be generated from electronic
medical record systems; some commercial services also provide such
services, but confidentiality must be assured. Periodic reports
of achievement of clinical standards (viral load targets, opportunistic
infection prophylaxis, vaccination, cancer screening, and other
health maintenance activities) can easily be provided to individual
providers, and to the clinic medical director, linking implementation
of the chronic care model (see Chapter 1) and quality management
(see Chapter 17).
What enhancements
can make an HIV clinic more effective?
Clinics can
enable patients to better care for themselves by providing them
with information about HIV and by building a community among them.
Patients should be given education materials; a separate area with
HIV-related materials may help maintain confidentiality. Some clinics
display male and female condoms with instructions about their use
and have available other information on safer sex and birth control.
Much information is available for patients, including publications
on medications, side effects, and adherence. Free materials are
available from Federal and State web sites, and the pharmaceutical
industry also produces some excellent materials.
Many ASOs and
clinics host support groups for interested patients. Participation
must be voluntary, and only patients comfortable with revealing
their status to other patients will be willing to participate. Some
groups target specific populations. Groups may be more successful
if an experienced counselor or mental health provider leads them.
Some clinics hold classes on HIV and adherence. Clinics serving
pregnant women and parents may include classes on birth preparation
and parenting. Other clinics provide periodic symposia to keep patients
up-to-date on treatment advances. For clinics that have a community
advisory board, the board can be the organizing force for these
community updates. Both public grants and the pharmaceutical industry
support these events.
Some youth-oriented
clinics arrange social events and outings for their patients. Some
programs for children or mothers provide support services for both
infected and affected children, ranging from formal psychological
care to supportive recreational activities after school or during
school breaks.
How can
clinics implement interdisciplinary care?
It is not enough
to have staff from many disciplines on the payroll; rather, systems
have to be created that allow staff to function as a team. Training
with followup by supervisors is essential. Specific tasks of each
staff member need to be assigned (Table 16-3). Ideally, the staff
can meet for a few minutes prior to each clinic session to anticipate
special needs and allocate personnel resources. Some clinics place
a checklist on each chart at each visit, to indicate which team
members a patient is meant to see that day and to confirm that all
intended interactions have occurred.
The team's potential can best be utilized if there is a regular
opportunity to meet and discuss patients outside of clinic sessions,
often called multidisciplinary team meetings. When all members participate,
the discussions can range from selecting antiretroviral regimens
based on genotype or phenotype results for one patient to addressing
chronic mental illness for another. Services for infected and affected
family members can be coordinated at these sessions.
Should clinics
have a stated policy regarding controlled drugs?
Controlled
drugs are needed as part of comprehensive care of HIV-infected patients,
for treatment of psychiatric conditions and pain. At the same time,
many patients with HIV have had prior or have current issues with
substance abuse. The clinic should have policies in place regarding
prescription of controlled medications: how many prescription refills
are provided at a time, how new refills are provided, access to
controlled drug prescriptions or refills outside of normal clinic
hours, and refills of lost medication or lost prescriptions. To
avoid confusion or disagreement some clinics have patients sign
copies of the clinic policy regarding use of controlled medications
before they are given prescriptions. It may be necessary to provide
formal notification to a substance abuse program or parole officer
that the clinic is prescribing a controlled medication, specifying
the drug, dose, and duration of treatment.
Table
16-3. Clinic Staff Responsibilities
Tasks
prior to a clinic visit
- Remind
every patient of appointments via phone call or postcard
- Review
charts to list items to address during the visit
Tasks
during a clinic visit
- Verify
patient's current contact information and current insurance
status
- Orient
new patients
- Assist
with insurance gaps (teaching about need for referrals,
help with insurance application or ADAP, etc)
- Assess
other barriers to care and psychosocial needs
- Assess
medication adherence
- Teach
and provide behavior change counseling about medications
and self-care
- Assess
ongoing transmission behaviors
- Teach
and provide behavior change counseling about transmission
behaviors
- Educate
about clinical trial opportunities (if applicable)
- Make
referrals for psychosocial services
- Make
referrals/appointments for medical, dental, mental health
care
Tasks
following clinic sessions
- Make
followup calls regarding new medication regimens or referrals
- Call
or mail postcards to patients who miss their visits
- Help
patients overcome barriers to clinic attendance
- Extract
data and enter it into the information system (not necessary
with electronic medical records)
|
Support
Services and Linkages Needed for HIV Care
TOP
How do support
services enhance the clinical care of persons with HIV?
It is a rare
clinic that has the funding, personnel, and expertise to address
all of its patients' psychosocial issues. Most patients need services
from an array of agencies. Case managers assist patients in accessing
the range of services and entitlements that can help them succeed
in treatment. This includes assistance in applying for insurance;
accessing support groups; accessing supplemental food, housing,
homemaker and other concrete services; accessing mental health and
substance abuse services. Case managers should perform periodic
assessments of clients' needs and update comprehensive care plans
every 6 months. Home visits can be very useful as part of the assessment.
Some case managers or their agencies will provide selected direct
services themselves; these may include short-term counseling, transportation
for clinic visits, accompanying patients to clinic visits, and providing
financial assistance for specific emergencies. Excellent case managers
help motivate patients.
Close coordination
between clinic staff and case management is important to avoid duplication
of effort and services. Periodic case conferences between clinic
staff and case managers are ideal. Written communication, for example
sharing case management care plans, can be useful. Case management
agencies and clinical sites need to obtain written consent from
patients to share the information that allows coordination.
How do clinics
create useful linkages with community-based services?
Clinics can
develop relationships with community-based case managers or directly
with providers of specific services, such as metal health, substance
abuse, or housing. Personal contact between clinic and agency is
important to establish the relationship, and ongoing contacts are
necessary for coordination. Community organizations are often pleased
to give in-service education to clinic staff in order to streamline
the referral process. Clinics should make their expectations clear
to community-based agencies. Clinics can function as advocates to
ensure that their patients receive the attention and services for
which they were referred. Periodic interdisciplinary meetings of
clinic staff with representatives of community-based agencies, including
case managers, are very useful.
How should
consumers be involved in the provision of HIV clinical care?
Many clinics
have created consumer advisory boards to participate in planning
and quality management. Experiences have varied greatly, with some
advisory board members educating themselves about the issues and
providing expert input to these processes. Other boards act more
as social event or support groups. Clinics are likely to have to
train board members in technical background regarding HIV and care
provision, and in the role of advisors. Board members must agree
to confidentiality policies, even though information about individual
patients or staff members should not be discussed. Clinics have
to create meaningful opportunities for advisory board members to
provide input: this may involve discussion of workplans in writing
grant applications, planning outreach activities, modifying clinics
to enhance recruitment and retention of patients, and participating
in quality management teams. When consumers are living in poverty
or otherwise difficult conditions, obtaining ongoing participation
of volunteers may require providing transportation to meetings,
meals at meetings, and reimbursement for childcare or similar expenses.
Some clinics find it useful to pay officers of their advisory boards
in order to enable the officers to devote adequate amounts of time
to the project. If this seems contradictory to the spirit of volunteerism,
we should remember how much continuing education of medical and
nursing professionals relies on enhancements to recruit participation.
Creating effective advisory boards takes time, but can be a valuable
investment. Advisory board members, while providing an outside view
of the clinic to the clinic management, often provide useful community
outreach and improve public relations.
Less intensive
consumer input involves the use of periodic satisfaction surveys
or questionnaires of clinic patients, confidential or anonymous
mechanisms for eliciting suggestions, and a publicly accessible
grievance procedure. Clinics with advisory boards use these mechanisms
as well.
What resources
are required to provide comprehensive HIV/AIDS care?
Financial:
Patient access is maximized in clinics that can accept Medicare,
Medicaid (including Medicaid managed care), and county insurance
programs. Clinics should have a sliding fee scale. Clinics should
assist appropriate patients to enroll in the AIDS Drug Assistance
Program (ADAP), to access the drug coverage or other clinical services
that vary by State. Within designated metropolitan areas, RWCA Title
I funding may be available. Clinics planning to serve a moderate-to-high
volume of HIV patients can apply for a RWCA Title III planning grant.
Clinics serving women, pregnant women, youth, and families are eligible
to apply for Title IV funding. Clinics may collaborate with other
agencies in seeking RWCA funding.
Personnel:
A lone provider whose patients are self-sufficient or can access
community-based services can "provide" comprehensive HIV/AIDS
care. For most patients, care is more effective if multiple team
members are available at the clinical site.
Facilities:
In addition to the usual office layout, other facilities are useful.
An examination room suitable for gynecologic exams is important.
An apparatus for pulse oximetry is very useful in assessing patients
with respiratory symptoms. Easy access to facilities for collecting
venous blood, urine, and stool specimens should be available. On-site
access to rapid tests that do not require CLIA certification may
be useful, such as urine pregnancy tests, capillary blood glucose,
and perhaps the newly licensed rapid whole blood HIV antibody screening
test. Laboratory certification to perform urine analysis and microscopic
examination of vaginal fluid specimens is very useful. Refrigeration
to maintain vaccines and material for tuberculin skin testing is
necessary. Refrigeration also enables the clinic to provide patients
with on-site injection of medications required once a week or less
frequently and to instruct patients in the use of more frequent
injections.
Training
and technical assistance: Patients look to nontechnical staff
to corroborate information given by physicians and midlevel providers.
Further, patients expect the same accepting attitude from all staff
members. Thus, all staff need training in both technical and cultural
matters. One important resource is the local performance site of
the AIDS Education and Training Center (AETC) funded by HRSA to
provide training and technical assistance to clinics. The local
AETC and the National Clinicians' Consultation Warmline provide
detailed and patient-specific education to assist clinicians in
making treatment decisions. Written educational materials for staff,
such as national and regional treatment guidelines, are available
free on the web and are frequently updated. Many regional and national
meetings provide training in both clinical care and prevention.
Assistance with enhancing and implementing systems of care, including
instituting a quality management program, is also available from
the AETCs. Chapter 18 provides other resources for training and
information.
- In order
to recruit persons with HIV who are not in care, clinics need
to establish referral linkages with community agencies such as
HIV testing services, AIDS service organizations that provide
case management, STD and drug abuse treatment facilities, family
planning agencies, local health departments, regional HIV/AIDS
hotlines, and local hospitals and emergency rooms.
- Clinics
can retain patients in care by respecting patients, providing
them with effective care, and addressing cultural and language
differences between patients and staff. Providing a welcoming
staff attitude and physical environment are also important.
- Orienting
patients to the clinic systems and rules and telling them what
is expected of them can improve attendance and adherence to care.
- Primary
care clinics must be able to provide, either directly or through
referral, an array of clinical and psychosocial services that
includes mental health and substance abuse services, support for
HIV prevention and adherence to care, and close medical monitoring.
Some issues that differ in HIV disease from other medical conditions
include that there is little room for error in providing treatment,
that providers may need to change their own behaviors and attitudes
to provide effective care, that preventing HIV transmission is
a critical component of patient care, and that patients continue
to suffer discrimination and stigma.
- Patient
services can be enhanced in primary care clinics through the introduction
of mechanisms for reminding staff of clinical standards, simplifying
data collection, and monitoring quality improvement. These can
include forms, checklists, and flowsheets, on paper or in electronic
databases, and can result in feedback such as reports to individual
providers. In addition, educational materials and support activities
for patients can enhance their care.
- An interdisciplinary
care team, which is an important component of HIV primary care
services, can be developed by creating systems for staff collaboration
and communication, such as training, assignment of tasks with
checklists on patient charts designating responsible team members,
and multidisciplinary team meetings at which the issues of individual
patients are discussed.
- Resources
needed to provide comprehensive HIV care include the capacity
to accept Medicare, Medicaid, and county insurance programs and
access to the AIDS Drug Assistance Program for coverage of antiretroviral
drugs. In addition, the Ryan White Care Act makes a variety of
funding programs available for direct funding to clinics for care.
Ongoing training and technical assistance are critical to keep
the expertise of staff up to date.
Suggested
Resources
TOP
National HIV/AIDS
Clinicians' Consultation Center (Free and confidential advice from
a multidisciplinary team):
Warmline:
1-800-933-3413 Monday-Friday, 9 am to 8 pm EST
PEP Hotline: 1-800-448-4911
24 hours a day/7 days a week
Website.
Accessed 2/04.
HIV/AIDS
Bureau. Accessed 4/04 (An array of technical assistance tools
for clinic management are available at this HRSA website)
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