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CHAPTER 3El Rio Health Center: Arizona Border HIV/AIDS Care Project
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THE EL RIO MISSION To be an accessible and affordable community health center that provides comprehensive quality health care in an atmosphere of respect and dignity for patient and staff, always sensitive to the cultural differences in the community. Through direct services, advocacy, and education, the Center will strive to improve the health and well being of its patients and community. |
El Rio/SIA has been providing outpatient medical care for HIV-positive residents of Pima County for more than 12 years. Enrollment of HIV/AIDS patients from 2000 to 2004 exceeded 1,400 and averaged more than 160 new patients each year. Staff members include four physicians and a nurse practitioner who have extensive experience in the treatment of HIV/AIDS. They provide outpatient medical care with the support of a registered nurse, three licensed practical nurses, and three medical assistants. The clinic also has on staff five continuity-of-care coordinators (i.e., medical case managers), a medical records clerk, an AIDS drug assistance medication coordinator, and two office staff. Other onsite services include mental health services with psychotropic medication prescribed by a psychiatrist and monitored by a psychiatric nurse practitioner. Nutritional counseling is provided by a certified nutritionist. Medications and lab services are available onsite, and substance abuse counseling is provided onsite through agreements with the local behavioral health agency funded under Ryan White HIV/AIDS Program Part B. Services and staffing patterns have been designed to provide an accessible, integrated, comprehensive continuum of medical and social support services.
Clinic services at El Rio/SIA are available 5 days per week; an El Rio/SIA physician is on call at all times. Services are sensitive to the special needs of HIV/AIDS patients. Patients are eligible regardless of age, gender, race, national origin, ethnicity, sexual orientation, or socioeconomic status. Through Ryan White HIV/AIDS Program funds (Parts B and C) and third-party contracts, services are provided to uninsured patients and those insured through most private or public health insurance plans. If hospitalized, El Rio/SIA patients receive inpatient care from El Rio/SIA physicians, whose familiarity with the patient and the disease helps optimize care.
El Rio/SIA has long been an active advocate for services to PLWHA. El Rio/SIA works with and is represented in the following organizations that focus on HIV/AIDS: Pima County HIV/AIDS Care Consortium (Ryan White HIV/AIDS Program Part B), the Arizona AIDS Drug Assistance Program Advisory Committee, the Southern Arizona HIV Prevention Planning Group, the faculty of the Arizona AIDS Education and Training Center (AETC), and the statewide HIV/AIDS Coordination Council.
As indicated earlier, El Rio/SIA became a partner in the SPNS Border Health Initiative to strengthen its work with populations at risk for HIV by increasing its outreach and care capacity. An evaluation component helped the agency assess its outreach efforts and learn about patients’ perceived barriers to accessing health care in Arizona border communities. The 5-year experience increased staff capacity to design evaluation protocols, collect data, and coordinate evaluation efforts with SPNS staff, other partner SPNS grantees, and staff at the Centro de Evaluación at the University of Oklahoma.
The ABHAC project reflected the planning efforts of seven area agencies striving to address the distinctive health care needs of PLWHA who live along the Arizona–Mexico border. ABHAC proposed using the SPNS initiative to strengthen its outreach to at-risk populations by increasing opportunities for HIV testing and counseling. The goal was to increase the number of patients who accept referrals to primary health care by identifying and removing patients’ perceived barriers to care. A key component of the initiative was to increase capacity of rural primary health care providers to care for PLWHA.
El Rio was well-positioned to serve as the lead agency for the ABHAC project for two reasons. First, El Rio had organizational and administrative resources for undertaking such a collaborative project. Second the unit chief at El Rio/SIA was a key resource for the clinic and a leader in the treatment of HIV/AIDS, and he was interested in developing a physician co-management model for increasing localized care for PLWHA. He had extensive experience both in providing care and serving as consultant to primary care physicians caring for PLWHA.
Potential project collaborators were surveyed to identify the needs of HIV/AIDS health care service delivery systems and potential barriers to consumers of those services. They were asked to submit ideas for innovative and extended services designed to integrate regional medical service systems, thereby ensuring proper continuity of care. The following partners agreed to collaborate in the ABHAC project:
The collaborating organizations agreed on the following goals for the project:
A primary focus of the ABHAC project was to increase outreach efforts to at-risk groups who live along the U.S.–Mexico border. Ryan White HIV/AIDS Program funding, including the SPNS grant funds, made it possible to increase outreach staff at CHCs, county health departments, and other health promotion programs and to provide essential training. The Arizona AETC trained outreach workers. The focus of the training was to familiarize the workers with HIV/AIDS and how the illness affects people. Training included learning about their role as a paraprofessional working with a professional medical team. Trainees were taught to recognize risky behaviors and learned strategies for helping clients overcome perceived barriers to HIV testing and accessing care. Outreach workers received ongoing supervision and participated in various staff meetings within the agency and with partner agencies to learn referral procedures, eligibility requirements, and changes in social service resources.
Training of physicians and support staff was designed to reduce interference with client and patient schedules. Training took place during lunch; the Arizona AETC facilitated training and provided food for the participants. Staff of the Arizona AETC collaborated with an El Rio/SIA physician to develop training that focused on eight core HIV educational content areas. Training sessions were offered quarterly. In Year 4 (2004), the eight core educational units were compiled into a self-paced training manual that was developed by the Arizona AETC director. The Chiricahua CHC staff translated the training manual into Spanish. The manual is now used by CHCs for their HIV training programs in southern Arizona.
Physician training used a medical co-management model developed by the El Rio/SIA physician who became the consulting HIV expert (CHE) for the project. He identified primary care physicians who were interested in strengthening their skills in treating PLWHA. In the first phase of training, the physician trainee would observe the CHE’s interaction with the patient. At the end of the day, the CHE would review and discuss each patient’s case with the trainee. During Phase 1 (Year 2), the CHE scheduled a monthly clinic visit at each site. In Year 3 of the training, the patient care was transferred to the health center physician, and the CHE provided consultation. The course of treatment selected by the physician was the focus of the educational consultation. In Cochise County (Chiricahua CHC) and Santa Cruz County (Mariposa CHC), the CHE provided monthly consultation to clinic staff. In Yuma County (Yuma), an infectious disease (ID) physician provided medical care to HIV-positive patients and consultation to the Sunset CHC. The CHE and Yuma County ID physician communicated quarterly to discuss ABHAC patient care.
The medical co-management model consists of a CHE, a local primary care provider (LPCP) and his or her clinic, and any ancillary local organizations that are involved in the delivery of services to PLWHA.
Physicians generally concur that PLWHA receive quality HIV care from physicians experienced in HIV care. The HIV Medicine Association (HIVMA) and the American Academy of HIV Medicine (AAHIVM) both call for all PLWHA to have access to an HIV expert. Both organizations define HIV expertise as knowledge that is based in training, experience, and HIV-specific continuing medical education (CME). The HIVMA and AAHIVM classify as specialists physicians who see a total caseload of at least 25 HIV-positive patients over a 2-year period and pursue HIV-related CME.8 U.S. metropolitan areas usually have had higher incidences of HIV/AIDS than rural areas. Consequently, rural areas have an insufficient number of experienced HIV providers to care for patients living there. To address this problem, the ABHAC project developed a model for the medical co-management of PLWHA. The model sought to address the needs of primary care physicians and PLWHA along the Arizona–Mexico border. The model involves in two phases: initiation and maintenance.
The initiation phase seeks to improve the capacity of the LPCP and his or her clinic to serve HIV-infected patients with quality care. The clinic administration and staff must be informed of any plans to see PLWHA, and their concerns must be addressed. Often the administrator expresses concerns about the cost of HIV care and its potential impact on provider productivity. Clinic staff generally require education about the nature of HIV infection and possible occupational risk (e.g., needle sticks). The LPCP is provided with the reassurance that he or she will be adequately supported by the CHE. The involvement of local providers of ancillary services is important early in the process because the CHE will need to learn what services are available in the LPCP’s area. Such services are generally less available than in areas of higher HIV prevalence.
In the ABHAC model, the CHE travels to the LPCP’s clinic and sees HIV-infected patients with the LPCP on a regular basis, depending on patient volume and need. In the ABHAC experience, a monthly visit was necessary for the program to be successful. It also was important that the LPCP have a well-defined and sufficient period of time to devote to the patients. During the initiation phase, the CHE serves as an expert in HIV care for the LPCP and the clinic staff and provides hands-on education to the LPCP. During this phase, the CHE teaches the LPCP a culturally competent approach to bringing care to the local population of PLWHA. Finally, during this phase, the LPCP and the CHE seek to develop a mutual understanding and trust to facilitate future collaboration and cooperation. A typical day during this phase may require devoting some time to reviewing charts and case notes to anticipate patient needs and clinical issues before seeing patients in the clinic. Asking the patients seen that day to have lunch together as a group (with the LPCP) may increase patients’ awareness of new issues in HIV care and build trust in the LPCP. After lunch, patients not only have learned about HIV but also have a better idea of their physician’s level of understanding of the disease. The length of this phase varies with the number of patients seen and the needs of the clinic and the LPCP. The ABHAC project found that the initiation phase requires at least 18 to 24 months.
The maintenance phase is intended to provide opportunities to reinforce and practice skills acquired through trainings and consultations. Throughout this phase, the objective is continued HIV patient care by the LPCP, either as a developing HIV expert or within a more loosely maintained co-management model. In some cases, the LPCP will be able to see a sufficient number of PLWHA to improve upon his or her knowledge of HIV and become an expert in this area. The CHE makes fewer personal visits to the LPCP’s clinic but may continue to serve as a resource for consultation, education, and quality assurance. In the ABHAC model, the CHE travels to the LPCP’s clinic quarterly and meets with the LPCP to conduct chart reviews and to discuss any specific issues of concern to the LPCP. During those quarterly visits, the CHE continues to see some patients with the LPCP to demonstrate continued commitment to the patient community. The chart review on all active patients uses the same quality assurance and chart audit tools that are used at the CHE’s clinic. The CHE then leads a didactic session over lunch with the LPCP and clinic staff as well as other local HIV caregivers.
The ABHAC project developed the medical co-management model at three sites along the Arizona–Mexico border. The key component for success was identification of a LPCP who was interested in participating in the program. Not all primary care physicians are interested in providing HIV care. Even though the clinic administration may be able to provide incentives, such as additional time or some other form of compensation to participating physicians, without genuine interest from the physician, the model will not work.
Administrative buy-in is another key to success. Adoption of a co-management model to care for PLWHA requires more provider time and more resources than caring for patients without HIV disease. CHCs that do not receive funds for HIV care are less likely to participate in the delivery of HIV medical care because of the associated cost. Fortunately, CHCs like the ABHAC partners make decisions on the basis of the needs of the community they serve, not simply on fiscal considerations.
Administrative support was gained in two ways: first, by presenting epidemiological data showing that significant numbers of PLWHA live in the CHC catchment area, and second, by ABHAC staff sharing personal stories of patients who were unable to access quality care in their own communities.
The personal characteristics of the CHE also are important in ensuring success. It is critical that the LPCP feel comfortable with the CHE and that the CHE work to involve the clinic and the community in the co-management model. Often, physicians with expertise in HIV are so immersed in clinical care of their patients that they overlook the anxieties that HIV still evokes in many health care providers and in the general public.
Finally, early collaboration with local community-based organizations was important in gaining their support and fostering greater understanding and acceptance of the co-management model among patients.
In summary, the medical co-management of PLWHA is a model that promotes the professional development of clinicians caring for patients living in areas of low HIV prevalence. Consequently, patients are able to access medical care from experienced providers of HIV care in their community. The application of this model has the potential to improve health outcomes and lower health care costs for PLWHA in rural areas.
The goals of the ABHAC project were as follows:
By 2004, the ABHAC project had reached more than 30,000 people through in-person and group contacts. Of the people contacted through outreach, 5,336 elected to be tested for HIV; of those, 33 tested positive for HIV. Nine tests were inconclusive. By August 2004 the project had enrolled 128 patients, distributed among counties as follows: Cochise, 45 percent; Yuma, 48 percent; and Santa Cruz, 7 percent. The project also continues to serve people who test positive for HIV. The project saw a growing number of women who tested positive for HIV but had no identifiable risk factors other than having a spouse or male partner who had tested HIV positive. The women learned of their diagnosis after their male partner was hospitalized or had died of AIDS.
The ABHAC project experienced some obstacles during implementation. The project was helped by the established relationships among the leadership of El Rio Health Center staff and the project collaborators as well as by relationships among the collaborators. The project coordinator had a background in HIV/AIDS and behavioral health that was especially useful for the project and had collaborated with the project evaluator on other behavioral science research studies.
The departure of the Chiricahua CHC medical director proved to be beneficial to the center. The director had been ambivalent about treating HIV-positive patients because of concerns about confidentiality. After the medical director left the CHC, the CEO worked out an arrangement for the staff from the three entities (the CHC, El Rio/SIA, and ABHAC) to work together to enroll HIV-positive patients into the CHC and the ABHAC project.
Each collaborating site had turnover issues involving the staff assigned to work on the project. However, project staff were highly motivated and dedicated to the goals of the project, and site collaborators worked hard to ensure that ABHAC activities were not adversely affected by the changes. Staff working on the project were highly motivated and dedicated to the goals of the project and to education of the community about HIV disease.
The components of ABHAC were structured as follows:
The project was recognized by the Arizona Department of Health Office of HIV/STD Services for its outreach work with minority communities and was awarded Ryan White HIV/AIDS Program Part B Minority AIDS Initiative funds. The funds provided outreach and education to HIV-positive minority residents of rural communities who are AIDS Drug Assistance Program (ADAP) participants.
The project evaluators collected both qualitative and quantitative data and conducted quality assurance checks on all the data. The qualitative data added context to the quantitative data and provided a more meaningful analysis of the statistical findings. The project conducted a thorough evaluation of process and patient outcomes in the context of both direct patient services and program goals and objectives.
Focus groups and in-depth interviews with PLWHA, key community stakeholders, and program staff were held to identify patient and program needs from the various stakeholders’ perspectives. Information obtained through this process was used to improve outreach and case-finding strategies, service delivery protocol, and development of provider networks. The process provided the program with the means to be more responsive to the expressed needs of the targeted community groups. The qualitative evaluation also was used to identify perceived social, economic, and cultural barriers to accessing care. The strategies for reducing the barriers to access and retention to care were in part based on the input obtained from project stakeholders and collaborators.
Quantitative data collection activities entailed using standardized instruments, such as questionnaires and patient chart reviews, to provide a comprehensive account of program inputs, activities, outputs, patient outcomes, and program outcomes. Program outcome measures included the number of people contacted through outreach, the number of PLWHA enrolled in the project, and health outcomes indicators.
The project found that cultural and linguistic competencies are essential skills for working with populations who live in the U.S.–Mexico border region. Those competencies are particularly helpful in providing health care to monolingual Spanish speakers. The project contracted with local evaluators who had extensive research background in measuring cultural competency. Project providers conducted an annual assessment designed to assess staff members’ cultural exposure, experience, and willingness to interact with multicultural populations and socially marginalized groups, such as IDUs and MSM. The instrument measured several domains, such as the value of human diversity, the understanding of culture and its application to particular communities, and the understanding of the dynamics of interpersonal interactions. The Arizona AETC and CHE developed staff in-service training sessions based on findings from the annual cultural competency assessment.
The ABHAC project team worked closely with the multisite evaluation center to address local data and evaluation issues. This process ultimately resulted in improved documentation of outreach activities and improved delivery of patient services.
Between February 2001 and March 2005, the ABHAC project enrolled 128 patients in the study. Sixty percent of the patients were Hispanic; 16 percent were women; and 31 percent were heterosexual. Other sociodemographic characteristics of the study population were as follows:
In addition, the data revealed the following HIV-related characteristics among patients:
During each patient visit, health care providers recorded patients’ CD4 counts, viral load, and number of opportunistic infections as indicators of health. The mean CD4 count for all patients enrolled was 475, and the mean viral load was 27,946. The goal is to have each patient achieve a CD4 count above 300 and a viral load in the undetectable range (below 50). Physicians completed a Karnofsky Performance Scale (Coffey et al., 2006) at each patient visit. The Karnofsky scale measures a patient’s disease progression and his or her ability to care for his or her own daily needs. The scale is calibrated from 0 (death) to 100 (fully functional). The mean Karnofsky value for enrolled patients was 87. A score of 80 indicates some signs or symptoms of the disease, but the patient is able to participate in normal activities with some effort.
In January 2004, the ABHAC Annual Health Provider’s Cultural Competence Assessment was administered for the third time. The assessment was given to support staff (not physicians) to assess their attitudes about providing care and culturally competent services to PLWHA. The findings indicated that most nonphysician health care providers supported the need to provide culturally competent health care. Also, each of the sites surveyed (CHCs and county health departments) endorsed the development of specialized HIV/AIDS care. This capacity would be achieved through ongoing training and education offered by the AETC and physicians who specialize in HIV medical care.
During the ABHAC project, more than 30,000 people were reached through individual and group contact encounters. A total of 88 physician-to-physician discussions involving more than 169 hours of consultation were reported through Year 4 (2004). Although ABHAC did not reach its target enrollment of 280 patients, many of the program goals, such as providing patient care in rural CHCs, were achieved. In addition, the project achieved several short-term objectives, such as improving confidentiality and increasing the willingness of physicians to care for HIV-positive patients. The project’s plan to implement telemedicine was not feasible as a result of the limited availability of technology resources in rural health care settings.
The Chiricahua CHC experienced an increase in the number of HIV-positive
patients, an indication that the implementation of ABHAC in the clinic
was openly accepted. An issue the Chiricahua CHC and the other health
centers encountered was the reluctance of PLWHA to be seen in the health
center because of fear of disclosure of HIV status. With the implementation
of the co-management model, the health centers’ attending physician
saw patients monthly and consulted with SIA’s CHE. The co-management
model helped develop the physicians’ comfort with seeing HIV-positive
patients and changed the perception that the clinic staff had of PLWHA.
In addition, the Chiricahua CHC has collaborated with the Cochise County
Health Department to provide dental services to PLWHA and to coordinate
case management services.
CASE STUDY “Juan,” a 35-year-old Hispanic man, was hospitalized and referred to the SIA physician on April 14, 2003. He had difficulty walking because of neurological problems that affected his motor skills. He was diagnosed with late-stage HIV disease and enrolled in the ABHAC project on April 24, 2003. Juan’s lab results revealed a CD4 count of 10, a viral load greater than 750,000, and significant neurological impairment. Juan’s Karnofsky Performance Scale score was 40 (the optimum is 100), indicating significant disability and need for special care and assistance. Juan was not able to live independently and meet his daily needs. Juan was placed on antiretroviral therapy, fluconazole for oral candidiasis, and trimethoprim/sulfamethoxazole (Bactrim) for Pneumocystis prophylaxis. After hospital discharge and follow-up visits to SIA to see the consulting HIV expert (CHE), Juan was transferred to the attending physician at the Chiricahua CHC in Bisbee, Arizona. There, Juan’s care was managed by a physician who consulted with the CHE on the case. After 1 year of antiretroviral therapy, Juan’s CD4 count was 120 and his viral load was less than 50. He was ambulatory, his mental status was clear, and he was aware of the time and the date. His Karnofsky score was 80 (indicating normal activity with some effort and some signs or symptoms of disease), an increase of 40 points. Juan seemed well groomed and was able to get around without assistance. He was referred for a mental function status evaluation to determine the presence of HIV-related dementia or other organic problem. |
Cochise, Santa Cruz, and Yuma counties all reported an increased awareness of HIV/AIDS and acceptance of PLWHA in their communities. This change was observed by the service providers who educate the community and through events such as the community coming together to support awareness activities (e.g., World AIDS Day). In Cochise County, World AIDS Day was celebrated on the U.S.–Mexico border; the activities included a candlelight procession with participants who met at the border. In each county, the project collaborators were able to affect the perceptions and attitudes of CHC staff toward HIV/AIDS. The collaborators also were able to involve the faith-based organizations, government agencies, and social service providers in community outreach activities and HIV education.
From its participation in the SPNS U.S.–Mexico Border Health Initiative, El Rio/SIA learned several key lessons. First, establishing and maintaining community collaboration and structured avenues of communications are critical to achieving successful outcomes. ABHAC initiated monthly meetings among the collaborators to receive input, answer questions, and resolve issues related to project implementation. Through this process, ABHAC learned not to assume that working in a health care field in and of itself makes a person knowledgeable about the HIV transmission process or management of HIV disease.
Second, the CHC administration initially seemed reluctant to support all activities of the project. Through education and compensation for health care staff activities, health care centers became more open to project activities, including education and training.
Third, patients at the health care clinics worried that rural health care physicians did not have skills in HIV primary health care equal to those of physicians in urban centers who have experience in caring for many patients living with HIV. Consequently, educating patients about the co-management model of HIV care became an important component of the project. Patients needed reassurance that their HIV care was of a comparable quality to what they would receive in an urban center.
Another concern among patients was the possibility of a breach in confidentiality; therefore, during the implementation of the project, patients were made aware that the CHCs were addressing their concerns. As more patients were treated by rural CHCs, their perception of receiving inferior quality care and of having their confidentiality breached was alleviated or at least diminished.
Another lesson was that assessment of the training needs of health center
staff and physicians is important to the success of any project, as is
having knowledgeable training staff or access to an AETC. When scheduling
trainings in rural settings, it is important that staff not interfere
in the daily
operations of the clinic and the scheduled appointment times. The development
and use of the co-management model for physician training and the self-paced
HIV training manual for clinic staff proved to be effective for the project.
Finally, the process for communicating with collaborators was essential for the continued progress of ABHAC. Collaborators participated in monthly meetings that were based on a structured agenda in Years 1 and 2 (i.e., while the project was being implemented), then had bimonthly meetings in Years 3, 4, and 5; the approach successfully maintained clear communication.
The ABHAC project director and project coordinator began working with the collaborating partners to identify funding sources that could maintain project activities at some level. The project participants began to discuss the issue of sustainability at the start of Year 4 by adding this topic to the bimonthly meeting agenda. At each meeting, the group discussed funding opportunities for which the project might be eligible, either as an individual respondent or in collaboration with another agency. Patients who were receiving their medical care at El Rio/SIA remained at the clinic until the termination of the SPNS project; they continued to receive care beyond the SPNS project, although other Ryan White HIV/AIDS Program funds, not SPNS, paid for their care. Patients enrolled at the border CHCs that were eligible for Ryan White HIV/AIDS Program Part B funding were transferred from SPNS to that funding stream so that they could continue to receive medical care within the clinic.
The Arizona AETC continues to offer training opportunities to providers who practice along the Arizona–Mexico border. Project collaborators are aware that they may request training from the Arizona AETC at any time and that if funds are available, the AETC will try to meet their request. And finally, the CHE is seeking funds from pharmaceutical companies to support a rural medical training program that would provide HIV care updates and case presentations to rural health providers.
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6 2005 data are
not available for Santa Cruz, Nogales, Somerton, San Luis, and Douglas
counties.
7 “In Arizona’s HIV/AIDS
reporting, estimates of incidence are based upon the sum of new HIV cases,
and new AIDS cases which were not diagnosed as HIV infections in any
prior calendar year. These cases are referred to as emergent
cases and
are used as an estimate of incidence. Cases of HIV/AIDS can only be counted
as emergent in the year they were first diagnosed with HIV infection.
Persons who were emergent as HIV and diagnosed as AIDS in the same calendar
year are counted as emergent AIDS to avoid double counting.” (ADHS,
2006, p. 1)
8 For information on specialization
requirements, see www.hivma.org/Content.aspx?id=1782 and
http://www.aahivm.org/index.php?option=com_content&task=category§ionid=6&id=173&Itemid=236.