Knowledge Item: CA-Initiative Impact-14
Overall Recommendations 

These recommendations were written by George J. Huba, Ph.D., Lisa A. Melchior, Ph.D., and Abigail T. Panter, Ph.D., of The Measurement Group, based upon the cumulative set of findings given in this Online Knowledge Base on HIV/AIDS Care. These recommendations are solely the judgments of the authors and may not represent the official positions of the Health Resources and Services Administration, the HRSA HIV/AIDS Bureau, or the grantees who provided data for the cross-cutting evaluation studies. These recommendations may change substantially as additional analyses are undertaken or as more results are synthesized.

Check marks index findings to five major evaluation areas under consideration by HRSA as they affect the Ryan White CARE Act. Each major evaluation finding is marked by one or more of these icons to designate questions that the results may inform, based on the judgment of the authors of these recommendations.

a. Persons seeking HIV/AIDS care have varying levels of need-vulnerability. State-of-the-art programs designed for individuals not currently linked to services will increasingly find that prospective patients arrive at their facilities with diverse needs and vulnerabilities. These needs and vulnerabilities will include being young or old, not speaking English, having children who need care while the patient receives services, being from a community of color, not having insurance, lacking stable housing, being involved with the criminal justice system, being unemployed, not having an extensive formal education, having a history of substance abuse (including alcohol, heroin, crack cocaine, and other drugs), being a sex partner of a drug injector, and engaging in sex work.

Recommendation on Matching Services to Needs: It is recommended that HIV/AIDS programs conduct a comprehensive assessment of all new patients (or clients) and have a firm plan in place for providing a full continuum of needed services either in the program or through a tightly-linked network of agencies to which the patient is referred. If the patient is referred to an outside agency for services, it is further recommended that there be strong communication mechanisms in place – perhaps in the form of an experienced service advocate or case manager – because integrated medical and psychosocial services yield the best overall outcomes for the patient.

b. Innovative HIV/AIDS service models achieve positive outcomes with high-need populations. Literally hundreds of different analyses of the Cooperative Agreement evaluation data show that in these state-of-the-art service models, favorable medical and psychosocial outcomes can be achieved for relatively high-need and vulnerable populations that are comparable to those achieved for groups with fewer manifest needs. Result after result suggests that gaps in program outcomes between different groups of individuals living with HIV may be minimized by enriching the HIV-services continuum to be comprehensive, integrated within the same facility (or tightly linked), and utilizing services which are gender-, cultural or ethnic-, and behavior-appropriate and sensitive.

Recommendation on Outcomes Assessment to Eliminate Disparities: Given that these evaluation results suggest that comparable, favorable outcomes can be obtained for high need-vulnerability groups, it is recommended that provider agencies develop integrated service plans to serve individuals with different constellations of need, either within the program or through tightly-linked referrals. Additionally, it is recommended that a continuing process of reviewing outcomes for different groups be implemented to assure quality and constant improvement. Individual service provider agencies should have plans in place for meeting the comprehensive service needs of all HIV/AIDS patients who present themselves at the agency and for assessing possible disparities in outcomes for different groups that may emerge so that such gaps may be minimized and eventually eliminated.

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c. Comprehensive, integrated service models improve patient health and well-being. Higher-need individuals benefit from enriched programs that include case management, social supports, outpatient substance abuse services, transportation and accompaniment, outpatient mental health services, peer counseling, child care, and medication adherence programs. When the unique needs of an individual can be met within a comprehensive facility, that individual’s medical and psychosocial outcomes are greatly enhanced. Medical needs were only one of many cited by patients as being unmet at the time they enrolled into these model programs. Programs found it necessary to provide many types of services to these high-need patients.

Recommendation on Comprehensive Needs Assessments: It is recommended that the “gate-keeper” agency in each service continuum, or the agency at which the patient first presents for services, should have the capacity for, and the regular practice of, providing a comprehensive needs assessment for all individuals presenting for HIV/AIDS services. This comprehensive needs assessment should be available to all agencies that work with the patient, and an integrated service plan, spanning agencies, should be developed and carefully coordinated.

d. Community Based Organizations play a key role in the continuum of care. Small, population-targeted Community Based Organizations (CBOs) appear to be the most successful at recruiting high-need groups into the HIV/AIDS service system. Such organizations represent a key part of the overall services continuum because they tend to maximize the access of certain groups (e.g., ethnic-racial minorities, women, substance abusers, individuals from correctional settings, individuals with concurrent behavioral issues) into the system of care. Programs of the CBOs and of those medical facilities with tightly-integrated, CBO-like psychosocial services are perceived by their clients in a way that is somewhat more favorable than are those of medical programs with fewer integrated psychosocial services. High-need clients who receive CBO and integrated medical-psychosocial services also report that their quality of life is more likely to improve throughout the treatment episode.

Recommendation on Role of Community Based Organizations in the Continuum of Care: It is recommended that in any larger network of services, it is important to include population-targeted Community Based Organizations that can recruit and support high-need and vulnerable individuals with a variety of psychosocial services so that overall quality of life is enhanced and other health and psychosocial outcomes are maximized. CBOs that target defined groups with similar behavioral, cultural, or gender issues appear to be especially effective.

e. The Cooperative Agreement Projects successfully reduced barriers to care. Evaluation studies of the Cooperative Agreement Projects suggest that barriers to obtaining a full array of needed services were ameliorated by participating in these state-of-the-art service projects and that medical and psychosocial outcomes were maximized as a result.

Recommendation on Barrier Reduction: It is recommended that all HIV/AIDS agencies (whether primarily medical or psychosocial) have capacity for assessing barriers to receiving HIV/AIDS services as perceived by potential patients. Services should be provided internally or through tightly linked referrals to help remove those barriers. Such services might include case management and other kinds of treatment advocacy, as well as education on accessing care. It is important to realize that patient-perceived barriers may be both structural (such as a lack of knowledge about services, an inability to pay, non-enrollment in entitlement programs, or a lack of transportation to services) and interpersonal-social (such as an unwillingness to disclose HIV status, needing to care for children or a partner, or fear of rejection by family). Removing interpersonal-social barriers may require a richer mix of services than is required for removing structural barriers.

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f. Population-specific programs are especially successful in reducing barriers for their clients. Agencies that know the unique barriers encountered by specific types of individuals – such as agencies targeting a particular ethnic-racial, stigmatized, or disenfranchised group – are particularly effective at addressing such roadblocks to accessing quality care.

Recommendation on Population-Specific Programs: It is recommended that the overall service continuum includes agencies with target populations that have traditionally faced specific barriers to care. Such agencies play an unique and fundamental role in the overall services continuum to ensure that specific barriers are eliminated, patients are enrolled and retained in needed services, and health and psychosocial outcomes are maximized. Both perceived structural and interpersonal-social barriers to care may be somewhat different for groups with specific behavioral, cultural-racial, and gender issues; service providers from those groups may be especially helpful in removing the barriers.

g. Outreach is critical in recruiting traditionally underserved persons with HIV/AIDS into care. An important strategy for improving access to state-of-the-art programs such as those provided by the Cooperative Agreement Projects is to engage in active outreach to traditionally underserved groups using staff who either are from those groups or are professional specialists in the needs and issues of specific groups. Many possible methods of outreach can be effective in linking individuals to care: the Cooperative Agreement Projects collectively used a number of methods including street outreach, linkages to other HIV/AIDS agencies, linkages to other human service agencies that might have clients with HIV/AIDS (such as the criminal justice, substance abuse, and mental health systems), and recruitment of the sex partners, drug-using partners, and friends of current patients.

Recommendation on Outreach: It is recommended that each HIV/AIDS service agency, whether internally or through tightly-linked collaboration with other agencies, have the capacity for both street and agency outreach to ensure that the highest need clients are given equal access to care. Agencies that do not use such active outreach strategies may not include the most vulnerable groups in their treatment populations.

h. Ongoing community input is important for continuous quality improvement of HIV/AIDS services. Many of the Cooperative Agreement Projects undertook assessments for continuous quality improvement – through methods as varied as surveying active and potential patients, conducting focus groups with current and former patients, consulting with consumer advisory bodies, and surveying independent professionals. As a result, they were able to tune their service models to be maximally responsive to the needs of their target populations.

Recommendation on Assessments of Local System: As part of ongoing continuous quality improvement mechanisms, it is recommended that periodic assessments of barriers to care should be performed to identify any new or emerging issues that might prevent full access to high-quality HIV/AIDS services by patients. Similarly, it is recommended that a regular review of feedback from key stakeholders in local HIV/AIDS service systems be encouraged to ensure the relevance and responsiveness of these programs to their communities.

i. Ongoing planning is a key element in optimizing services for local needs. A number of the Cooperative Agreement Projects engaged in formal planning processes to tailor their service models to local unmet needs and other local issues. For instance, three University Medical School programs engaged in long-term planning processes to implement comprehensive and integrated care models within traditional medical school programs. Other projects spent several years planning and negotiating HIV/AIDS managed care delivery systems. Still other projects enhanced specific portions of the HIV/AIDS medical delivery systems in the District of Columbia, South Texas, Chicago, Brooklyn, Kansas City, and St. Louis using systematic and long-term planning processes. The planning process yielded locally-optimized services for high-need and vulnerable populations likely to have been historically underserved in those communities.

Recommendation on Ongoing Planning: It is recommended that comprehensive service planning models be part of continuing Ryan White CARE Act activities, because the services produced through comprehensive planning efforts lead to enhanced service networks with demonstrated positive outcomes for high-need and vulnerable groups. The effect of planning that involves key stakeholders is to provide a more comprehensive and integrated service system.

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j. Training is an important mechanism for effecting change in HIV/AIDS service systems. Training was used by many of the Cooperative Agreement Projects to optimize local service delivery systems. The majority of healthcare providers who received training from these projects reported that they implemented specific changes in their clinical services as a result of the training. Because the state-of-the-art in HIV/AIDS services continues to evolve at a rapid pace and there is a sustained influx of new providers, it is important to maintain such training and continuing education efforts. Furthermore, within these projects, trainees found a focus on high-need and vulnerable groups to be a particularly valuable element that permitted them to improve their own clinical services.

Recommendation on Training to Disseminate Treatment Information: It is recommended that opportunities for training on state-of-the-art comprehensive HIV/AIDS treatment to high-need and vulnerable groups be made available on a recurring basis to all Ryan White CARE Act agencies. It is further recommended that such training activities use the modalities shown to be especially effective by the Cooperative Agreement grantees and that all major training initiatives address special issues related to HIV/AIDS treatment among high-need and vulnerable groups.

k. Mechanisms for sharing among grantees help enhance and disseminate model programs. A key part of the Cooperative Agreement process was that representatives of 27 very diverse projects developing innovative service models met quarterly for five years to listen to one another’s service experiences and program outcomes. As a result, there was significant cross-fertilization of programs in that medical providers added psychosocial service elements, psychosocial service providers learned how to link more effectively with medical providers, and trainers were able to utilize both kinds of experience in educational settings. Program Directors actively helped one another solve local problems in service delivery and provided expertise and consultation to one another.

Recommendation on Model Dissemination: It is recommended that a number of local forums be established for Ryan White CARE Act funded service providers to meet on a regular basis and share service delivery experiences. To be maximally effective, it is further recommended that processes be developed in which medical and psychosocial service providers are co-equal partners in such information-sharing and cross-training activities and that methods be explored for ensuring candid discussions of major treatment issues. HRSA may wish to develop a generalized set of technical assistance materials and curricula for local groups about how to institute and maintain such a process.

l. Standards of HIV/AIDS care were met or exceeded by the Cooperative Agreement Projects. Patients treated within the Cooperative Agreement Projects received care that met or exceeded Public Health Service (PHS) standards. Many programs in the cross-cutting evaluation received service funds from a number of different sources so that greatly enhanced programs could be provided. Case management was provided to more than 90 percent of the patients. Triple combination drug therapies were provided to eligible patients. The Cooperative Agreement Projects demonstrated that state-of-the-art services could be successfully provided to individuals with many behavioral comorbidities and vulnerabilities. As a result, comparable outcomes were demonstrated for most groups defined by their service needs and vulnerabilities.

Recommendation on Outcomes for Specific Groups: It is recommended that all HIV/AIDS providers funded by the Ryan White CARE Act be asked to formally assess the degree to which their services meet PHS guidelines and the degree to which the services provided to different need and vulnerability groups are comparable. Should disparities exist in the services provided to various groups, it is recommended that a remediation plan be developed.

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m. “Wrap-around” psychosocial supports improve outcomes for HIV/AIDS patients. Patients in care from the Cooperative Agreement Projects received “wrap-around” psychosocial and support services that were designed for people of their ethnic-racial group and gender and were sensitive to their needs in other ways. Most programs were designed to be flexible so as to engage and retain individuals who had not been tightly connected to the service system. Very high-need patients could be retained in psychosocial support services as long as individuals with fewer needs and vulnerabilities. Case managed patients were more likely to stay in treatment and to move more quickly into other services. Linkages were enhanced by active patient management, and disparities in access to care were resolved through optimized programs.

Recommendation on Standards for Psychosocial Care: In aggregate, the Cooperative Agreement psychosocial service providers have defined a state-of-the-art for HIV/AIDS “wrap-around” psychosocial support services that tend to minimize differences in outcomes among groups with different needs and vulnerabilities. It is recommended that a formal continuum of such services be developed. It is further recommended that HRSA and/or the Public Health Service develop standards for psychosocial supports provided to individuals living with HIV/AIDS and that such standards have the same degree of comprehensiveness and detail as the current standards for medical care. Such standards should also recognize that groups with different needs (women, current and recovering drug abusers, ethnic-racial groups) may require different constellations of psychosocial services.

n. Health and quality of life improved for patients of the Cooperative Agreement Projects. As a result of both state-of-the-art medical care and sensitive-appropriate “wrap-around” psychosocial services, medical indicators, patient-rated quality of life, psychological distress, and patient-rated symptom severity all improved. The improvement was strongest in those cases where medical and psychosocial services were most tightly integrated.

Recommendation on Priority for Integrated Care: It is recommended that the tightest possible integration of psychosocial and medical services be a very high priority for HIV/AIDS service systems supported by the Ryan White CARE Act. Such integration of services should be a priority independent of the funding model used and can be achieved in a number of ways including “one-stop shopping,” tightly-linked independent service providers, and hybrid models.

o. Flexibility is crucial for ensuring that programs stay at the forefront of HIV/AIDS care. During the Cooperative Agreement process, there were significant advances in the medical treatments available for HIV/AIDS (e.g., combination antiretroviral therapies, viral load testing). In addition, there was an increasing recognition that comprehensive psychosocial supports were necessary, a changing population of newly-diagnosed HIV/AIDS patients, and numerous opportunities for supplemental funding to the programs. Between 1994 and 1999, great advances were made throughout the medical and psychosocial services systems that helped the programs evaluated here improve services, as well as develop additional program components that were co-funded through other sources. New standards and protocols were adopted in such areas as HIV/AIDS treatment, opportunistic infection prophylaxis, and perinatal transmission of HIV. The programs did not remain stable over the course of this funding initiative, and in fact many evolved to accommodate larger populations of higher-need patients with an enriched and expanded continuum of services. Flexibility is critical for creating and fine-tuning innovative programs that are, and remain, responsive to the needs of their target populations and stay on the cutting edge of new service delivery developments.

Recommendation on Flexibility in Implementing Treatment Models: It is recommended that flexibility in adding program components – achieved by tuning existing services through continuous quality improvement and utilizing outcome data in support of quality assurance and improvement – be formally recognized as part of the state-of-the-art for HIV/AIDS services and that continuing flexibility be recognized as a high priority for Ryan White CARE Act funded programs. Programs should be encouraged to allocate parts of their budgets for the activities of data collection, quality assurance, and quality improvement. Additionally, flexibility should be a key part of future demonstration project initiatives.

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p. Scarce treatment resources may place funding for services other than those for direct medical care in jeopardy. Funding and reimbursement mechanisms are constantly changing, affecting HIV/AIDS care programs on a daily basis. One challenge faced by many of the Cooperative Agreement Projects – ironically, in light of the many findings that illustrate the benefits of the comprehensive continuum of care – is that “wrap-around” services may be those most likely to be cut in light of scarce resources. The findings of the Cooperative Agreement Projects highlight the critical importance of continuing to fund and encourage the implementation of such linked psychosocial supports for high-need and vulnerable populations. Similarly, provider training and education were demonstrated to have a measurable impact on the provision of integrated and comprehensive HIV/AIDS care. Although not direct clinical services, continuing professional educational opportunities and other capacity-building activities serve to improve the state-of-the-art for HIV/AIDS care.

Recommendation on New or Enhanced Partnerships: It is recommended that the entire medical and psychosocial continuum of care be provided to HIV/AIDS patients either directly through the continuing priorities of the Ryan White CARE Act or through new/expanded partnerships between agencies primarily charged with the medical care of HIV/AIDS patients (such as HRSA at the federal level and state and local health departments) and those charged with the psychosocial care of populations such as substance abusers, those involved with the criminal justice system, or those with mental illness (such as SAMHSA at the federal level and state and local departments of drug treatment, mental health, and probation). Training is also needed to educate providers on the complete continuum of care, and such training may be provided through similar partnerships.

q. Advances in the medical treatment of HIV/AIDS may shift resources from other needed components of care. With the advent of highly active antiretroviral therapy (HAART) and related medical treatments, some providers and policy makers have been inclined to focus resources primarily on access to these pharmaceutical treatments, to the possible exclusion of other services within the continuum of care. Access to state-of-the-art medical treatments is critically important to continue the advances in HIV/AIDS care of recent years. The results of the evaluations of the Cooperative Agreement Projects clearly show that use of combination therapies improved patient outcomes. However, beyond these innovative demonstration projects, access to these drugs may still be limited in many settings. Even where access is available, not all patients are able to tolerate or adhere to the therapies equally, and many patients are in dire need of services in addition to those that reduce their viral load.

Recommendation on Integrated Care in Times of Scarce Resources: It is recommended that a tightly-linked continuum of integrated psychosocial services be provided – if indicated – to all patients receiving HAART or other complex medical therapies under the Ryan White CARE Act to insure adherence to the requirements of the treatments, and to promote outcomes beyond those indicated by the straightforward reduction of viral load.

r. Funding and reimbursement strategies may have an ultimate impact on patient outcomes. Alternate types of healthcare funding have been explored by the Cooperative Agreement Projects. As illustrated throughout the cross-cutting evaluation results, a continuum of care that includes “wrap-around” psychosocial supports is likely to produce better patient outcomes, especially when desirable patient outcomes are viewed more broadly than as simply changes in laboratory test values.

Recommendation on Integrated-Comprehensive and Managed Care: Given the importance of integrated medical and psychosocial services for achieving favorable patient outcomes, it appears important that alternate healthcare financing (or managed care) models be developed that include both medical and psychosocial support services as core components in the managed care plan. Economies achieved by limiting services to purely medical ones may significantly limit patient outcomes. Furthermore, because smaller Community Based Organizations are especially successful in providing “wrap-around” psychosocial services that are especially sensitive and appropriate for high-need and vulnerable populations, such agencies should be given the opportunity to participate in the service continuum developed under alternate funding methods.

s. Ongoing provider training makes the most of the HIV/AIDS treatment system. The complexity of HIV/AIDS medical and psychosocial treatment continues to grow. Issues of sensitivity to the treatment populations potentially multiply as new (often disenfranchised) groups enter the treatment population in greater numbers. At the same time, there have been strides in information technology and knowledge dissemination during the same periods that HIV/AIDS treatments have been enhanced. Better training methods can lead to a more sophisticated cadre of healthcare providers able to use new therapies with “behaviorally difficult” groups. Such training methods can include online training modules, interactive video, teleconferences, and other ways of linking geographically separated specialists together to the mutual benefit of the patients of these providers.

Recommendation on Ongoing Training on Integrated Care: It is recommended that there be continuing efforts to assess and improve methods for training healthcare providers about HIV/AIDS issues and that such training opportunities more fully focus on the integration of medical and psychosocial care. Furthermore, to increase the dissemination of this knowledge widely and into potentially geographically isolated areas, new technologies should be fully exploited.

t. The systematic collection of information about the projects through evaluation permitted the services to be optimized as patient outcomes were assessed. Working with high-need and vulnerable populations requires that many different patient issues be addressed. There is a need to share this information among service providers. A formal data system can provide one way of sharing this information. Furthermore, the Cooperative Agreement Projects demonstrated that it is important to monitor the outcomes that are being achieved within the program and related agencies and to determine whether there are disparities among the outcomes achieved for individuals from different groups. The use of systematic evaluation data documenting the needs of program participants, the services they receive, and their outcomes permits the program to be tuned to achieve optimal results for an increasingly diverse patient population.

Recommendation on the Collection of Standardized Outcome Measures: It is recommended that there be continuing efforts to collect data systematically about patient outcomes within Ryan White CARE Act funded programs. Additionally, the outcomes of infrastructure development and training programs should be captured and further evaluated for their long-term impact upon patient care. It is further recommended that certain methods for coding service units, patient characteristics, and outcomes be standardized across Ryan White CARE Act grantees and providers so that data from different treatment models can be pooled to determine collective outcomes. Conceptually redundant data systems currently required for different funders of services should be consolidated and streamlined as much as possible.

Last Updated: March 25, 2005; data through June 15, 1999; analyses conducted January 2001.