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Applying Chronic Illness Care, Implementation Science, and Self-Management Support to HIV

  • M. Khair ElZarrad
    Affiliations
    Division of Cancer Control and Population Sciences, National Cancer Institute, Rockville, Maryland

    Cancer Prevention Fellowship Program, National Cancer Institute, Rockville, Maryland

    Interagency Oncology Task Force Joint Fellowship Program, U.S. Food and Drug Administration, Silver Spring, Maryland
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  • Erin T. Eckstein
    Affiliations
    Division of Cancer Control and Population Sciences, National Cancer Institute, Rockville, Maryland
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  • Russell E. Glasgow
    Correspondence
    Address correspondence to: Russell E. Glasgow, PhD, Deputy Director for Implementation Science, Division of Cancer Control and Population Sciences, National Cancer Institute, 6130 Executive Blvd., Room 6144, Rockville MD 20852
    Affiliations
    Division of Cancer Control and Population Sciences, National Cancer Institute, Rockville, Maryland
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      Introduction

      At the 1989 international AIDS meeting in Montreal, the director of the National Cancer Institute announced that HIV/AIDS had evolved into a chronic disease and that cancer treatment should be used as a learning model for HIV/AIDS, with a focus on better disease management on the part of both individuals and healthcare organizations.
      • Fee E.
      • Fox D.M.
      The contemporary historiography of AIDS.
      This announcement reflected the success of therapeutics that can stabilize patients with HIV, allowing for improved quality of life and longer life span. Very recently, the U.S. Food and Drug Administration (FDA) approval of the HIV preventive drug Truvada®,
      • Cohen J.
      AIDS research FDA panel recommends anti-HIV drug for prevention.
      underscores the need for appropriate disease-management frameworks that address adherence and social/community environmental factors related to successful program adoption, implementation, and maintenance.
      Active stakeholder involvement is essential to improve adherence to any disease-management or preventive approach. The excitement generated by the approval of Truvada and recent clinical trials demonstrating the efficacy of pre-exposure prophylaxis (PrEP) products to prevent HIV-1 infection has been somewhat tempered by the results of later trials. For example, both the VOICE trial and FEM-PrEP were discontinued because of futility, with researchers indicating inconsistent adherence to the PrEP tablets and gels as important factors in the trials' failure to replicate earlier studies.
      • van der Straten A.
      • Van D.L.
      • Haberer J.E.
      • Bangsberg D.R.
      Unraveling the divergent results of pre-exposure prophylaxis trials for HIV prevention.
      • Cohen M.S.
      • Baden L.R.
      Preexposure prophylaxis for HIV—where do we go from here?.
      These two events—(1) a recognition of the similarities between HIV/AIDS and chronic disease necessitating better disease management and prevention and (2) the realization that non-adherence can derail quickly otherwise promising prevention strategies—indicate that an implementation-science perspective will be crucial for large-scale implementation of PrEP strategies.
      An implementation-science perspective
      • Glasgow R.E.
      • Vinson C.
      • Chambers D.
      • Khoury M.J.
      • Kaplan R.M.
      • Hunter C.
      National Institutes of Health approaches to dissemination and implementation science: current and future directions.
      considers factors beyond the efficacy of an intervention. Once PrEP leaves the resource-rich environment of clinical trials and enters the real world of overburdened healthcare systems, providers with limited time, and potential users with their own priorities and conceptions of illness, other translation and dissemination questions must be asked: How will PrEP and HIV prevention be prioritized by individuals, communities, and health systems? How will education be conducted about the tablets and gels? How can long-term adherence to a pharmacologic prevention regimen be maintained? How will healthcare organizations manage staff, resources, and patients to deliver prophylaxis? Are systems and resources in disadvantaged communities and low- and middle-income countries adequate for these challenges? Implementation science explicitly considers multilevel contextual factors,
      • Glasgow R.E.
      • Vinson C.
      • Chambers D.
      • Khoury M.J.
      • Kaplan R.M.
      • Hunter C.
      National Institutes of Health approaches to dissemination and implementation science: current and future directions.
      and two implementation-science models, the Expanded Chronic Care Model (ECCM)
      • Barr V.J.
      • Robinson S.
      • Marin-Link B.
      • et al.
      The expanded Chronic Care Model: an integration of concepts and strategies from population health promotion and the Chronic Care Model.
      and the Evidence Integration Triangle
      • Glasgow R.E.
      • Green L.W.
      • Taylor M.V.
      • Stange K.C.
      An evidence integration triangle for aligning science with policy and practice.
      in particular may be relevant to large-scale PrEP dissemination.
      The current authors posit that the Chronic Care Model (CCM),
      • Wagner E.H.
      Chronic disease management: what will it take to improve care for chronic illness.
      and specifically the ECCM,
      will address many of the above questions. The ECCM identifies the critical elements at multiple levels for a system of quality care and population health and should be useful for HIV prevention because of its focus on (1) patient self-management and (2) establishing linkages with community resources to create supportive environments, build healthy public policy, and strengthen community action.
      The primary purpose of this paper is to draw on the authors' own experience and that of others in conceptualizing chronic disease and implementing the ECCM, as well as implementation-science models
      • Damschroder L.J.
      • Aron D.C.
      • Keith R.E.
      • Kirsh S.R.
      • Alexander J.A.
      • Lowery J.C.
      Fostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science.
      • Green L.W.
      • Kreuter M.W.
      Health program planning: an educational and ecological approach.
      • Rogers E.M.
      Diffusion of innovations.
      • Gaglio B.
      • Glasgow R.E.
      Evaluation approaches for dissemination and implementation research.
      to provide recommendations for the prevention of HIV. Second, given that non-adherence appears to have played a role in the failure of recent PrEP trials, the current paper elucidates lessons learned in supporting medication adherence and self-management more generally. Finally, future opportunities are discussed, including wider and more-integrated use of mobile technology and other e-health tools.

      Conceptualization of Chronic Disease and Its Prevention

      The CCM developed by Wagner and colleagues
      • Wagner E.H.
      • Austin B.T.
      • Davis C.
      • Hindmarsh M.
      • Schaefer J.
      Improving chronic illness care: Translating evidence into action.
      is a conceptual framework that highlights the mobilization of resources required to adequately care for patients with chronic conditions. The model is patient-centered and aims to improve medical practices while emphasizing an informed and effective interaction between patients and healthcare providers. Since its development, the CCM has been used to improve chronic disease care at community health centers and free clinics in the U.S., which typically serve low-income and uninsured patients from a diverse range of racial and ethnic backgrounds.
      • Landon B.E.
      • Hicks L.S.
      • O'Malley A.J.
      • Lieu T.A.
      • Keegan T.
      • McNeil B.J.
      • Guadagnoli E.
      Improving the management of chronic disease at community health centers.
      • Stroebel R.J.
      • Gloor B.
      • Freytag S.
      • et al.
      Adapting the chronic care model to treat chronic illness at a free medical clinic.
      The individual components of the CCM are evidence-based, and analyses of the implementation of the CCM have shown improvements in both the processes and clinical outcomes of care.
      • Tsai A.C.
      • Morton S.C.
      • Mangione C.M.
      • Keeler E.B.
      A meta-analysis of interventions to improve care for chronic illnesses.
      On the global stage, the 2002 global report by the WHO highlighted the benefits of applying a version of the CCM, the Innovative Care for Chronic Conditions Framework, to manage diseases such as HIV/AIDS, diabetes, and tuberculosis in low-resource settings. The report stressed the comprehensive nature of the framework incorporating all levels of the healthcare systems to maximize resources and improve the quality of care.
      WHO
      Innovative care for chronic diseases Building blocks for action.
      Glasgow et al.
      • Glasgow R.E.
      • Orleans C.T.
      • Wagner E.H.
      • Curry S.J.
      • Solberg L.I.
      Does the Chronic Care Model serve also as a template for improving prevention?.
      found that the CCM also can also be used beneficially for disease prevention. They and others
      • Barr V.J.
      • Robinson S.
      • Marin-Link B.
      • et al.
      The expanded Chronic Care Model: an integration of concepts and strategies from population health promotion and the Chronic Care Model.
      concluded, however, that the original CCM is limited, given its primary focus on the healthcare system, and that it makes only modest use of broader community resources and policy linkages.
      Data on the social determinants of illness and the importance of the role of community in disease management and prevention led to the development of the Expanded Chronic Care Model (ECCM).
      • Barr V.J.
      • Robinson S.
      • Marin-Link B.
      • et al.
      The expanded Chronic Care Model: an integration of concepts and strategies from population health promotion and the Chronic Care Model.
      The ECCM allows for a better integration of health promotion and prevention strategies by highlighting self-management and the utilization of available community resources, and by incorporating cultural and societal factors.

      Expanded Chronic Care Model for HIV/AIDS

      Glasgow et al.
      • Glasgow R.E.
      • Orleans C.T.
      • Wagner E.H.
      • Curry S.J.
      • Solberg L.I.
      Does the Chronic Care Model serve also as a template for improving prevention?.
      highlighted the need to understand and approach chronic conditions such as diabetes not only as clinical conditions but also as public health issues. In the HIV/AIDS field, findings from recent clinical trials demonstrate the importance of linking both treatment and prevention, as antiretroviral therapy for infected individuals has been shown, if initiated early, to reduce transmission of the virus to HIV-negative individuals.
      • Cohen M.S.
      • Chen Y.Q.
      • McCauley M.
      • et al.
      Prevention of HIV-1 infection with early antiretroviral therapy.
      The rapid adoption of “treatment as prevention” by the WHO and the President's Emergency Plan for AIDS Relief is lauded as evidence-based policy making, although the challenges of reaching, testing, treating, and retaining all individuals who need care still remain.
      • Cohen M.S.
      • Holmes C.
      • Padian N.
      • Wolf M.
      • Hirnschall G.
      • Lo Y.R.
      • Goosby E.
      HIV treatment as prevention: how scientific discovery occurred and translated rapidly into policy for the global response.
      • Ockene I.S.
      • Hayman L.L.
      • Pasternak R.C.
      • Schron E.
      • Dunbar-Jacob J.
      Task force #4—adherence issues and behavior changes: achieving a long-term solution. 33rd Bethesda Conference.
      Both the original CCM and the ECCM connect six important elements needed for comprehensive care, and they highlight the need for prepared and proactive practice teams and engaged, activated patients/citizens. Given space limitations, the current paper emphasizes two elements of ECCM central to sustained self-management and adherence. The first is to improve and develop self-management support with detailed strategies in order to enhance personal and communication skills, ensure transparency and flow of information, and to allow for better integration of stakeholder perspectives into effective prevention strategies. The second is to develop and utilize community resources to encourage healthy policies and the structuring of a supportive and collaborative healthy environment. These elements are highlighted and expanded in Figure 1, which illustrates the need for comprehensive multilevel approaches that consider, mobilize, and involve individual stakeholders as well as societal and community characteristics and resources.
      Figure thumbnail gr1
      Figure 1Expanded chronic care model for HIV/AIDS
      Note: Substantially modified from Wagner (1998)
      • Wagner E.H.
      Chronic disease management: what will it take to improve care for chronic illness.
      and Barr (2003)
      • Barr V.J.
      • Robinson S.
      • Marin-Link B.
      • et al.
      The expanded Chronic Care Model: an integration of concepts and strategies from population health promotion and the Chronic Care Model.

      Expanding Self-Management Support

      Understanding and incorporating personal illness models
      • Kleinman A.
      The illness narratives.
      • Leventhal H.
      • Meyer D.
      • Nerenz D.
      The common sense representation of illness danger.
      is a prerequisite for patient activation, and for developing personal skills to achieve effective self-management. Leventhal's Theory of Self-Regulation
      • Leventhal H.
      • Meyer D.
      • Nerenz D.
      The common sense representation of illness danger.
      • Leventhal H.
      • Diefenbach M.
      • Leventhal E.A.
      Illness cognition: using common sense to understand treatment adherence and affect cognition interactions.
      posits the importance of parallel cognitive and emotional processes that explain how individuals understand an illness, and how this interpretation affects the decisions they make about taking preventive actions and managing disease. Leventhal's theory emphasizes that responses to medical advice depend on both cognitive and emotional constructs of the illness. Dunbar-Jacob et al.
      • Dunbar-Jacob J.
      • Dwyer K.
      • Dunning E.J.
      Adherence with anti-hypertensive regimen: a review of research in the 1980s.
      find such belief barriers to be key factors in medication adherence, a key issue in PrEP.
      In addition, a systematic review of adherence to highly active antiretroviral therapy across a variety of settings revealed barriers to treatment that are potentially relevant to PrEP. These barriers include fear of disclosure and associated stigma; forgetfulness; side effects (actual or anticipated); doubts about the efficacy of treatment; concerns about the administration of medications (size, frequency, taste); and issues of supply and access.
      • Mills E.J.
      • Nachega J.B.
      • Bangsberg D.R.
      • et al.
      Adherence to HAART: a systematic review of developed and developing nation patient-reported barriers and facilitators.
      Work in diabetes control revealed that beliefs about treatment effectiveness and an assessment of barriers seemed to be most predictive of the degree of a patient's self-management.
      • Hampson S.E.
      • Glasgow R.E.
      • Toobert D.J.
      • Strycker L.A.
      Beliefs versus feelings: a comparison of personal illness models and depression for predicting multiple outcomes in diabetes.
      • Glasgow R.E.
      • Hampson S.E.
      • Strycker L.A.
      • Ruggiero L.
      Personal-model beliefs and social-environmental barriers related to diabetes self-management.
      Assessing and providing tailored information that relates to personal models of illness, barriers to adherence, and specific cognitive and emotional interpretations of illness and beliefs about prevention and disease causation will be important for working with communities and individuals and deploying PrEP on a large scale.
      After assessing beliefs and barriers, practitioners should provide needed information and conduct frequent follow-ups. How these assessments are conducted (e.g., via cell phone versus in-person) and who conducts them (e.g., nurses, community health workers) and how follow-up is accomplished will vary across healthcare systems and settings. Although challenging for practitioners, provision of follow-up support from the health system is crucial to help individuals maintain engagement with interventions.
      • Glasgow R.E.
      Interactive media for diabetes self-management: issues in maximizing public health impact.
      This follow-up support can be achieved by linking patients to multiple resources in their communities and also by incentivizing providers or health systems through payment and reimbursement policy. Regardless of how they are implemented, effective self-management programs can assist individuals in developing the skills to prevent or manage their conditions by helping them set goals, identify and overcome barriers, maintain routines, and identify sources of support.
      • Glasgow R.E.
      Interactive media for diabetes self-management: issues in maximizing public health impact.
      • Lorig K.R.
      • Holman H.R.
      Self-management education: History, definition, outcomes, and mechanisms.

      Utilizing Community Resources

      The Enhanced Chronic Care Model emphasizes that the success and sustainability of prevention and treatment programs depends on efficient utilization of community resources and multilevel interventions. Indeed, lessons learned from chronic disease research studies reveal that systems should adopt more-proactive outreach strategies to engage with patients, and that prevention interventions should be built into primary care visits.
      • Eakin E.G.
      • Bull S.S.
      • Glasgow R.E.
      • Mason M.
      Reaching those most in need: a review of diabetes self-management interventions in disadvantaged populations.
      Strong interpersonal relationships with medical providers and support from friends and family have been reported to be facilitators to antiretroviral treatment adherence.
      • Mills E.J.
      • Nachega J.B.
      • Bangsberg D.R.
      • et al.
      Adherence to HAART: a systematic review of developed and developing nation patient-reported barriers and facilitators.
      Similarly, Nachega, Mills, and Schechter
      • Nachega J.B.
      • Mills E.J.
      • Schechter M.
      Antiretroviral therapy adherence and retention in care in middle-income and low-income countries: current status of knowledge and research priorities.
      suggest that community-based directly observed treatment programs and the social capital they utilize may facilitate adherence to treatment regimens. These same community relationships potentially could be accessed by individuals to support adherence to PrEP.
      Developing relationships and building partnerships with the community can be achieved by effective communication, cross-sector collaboration, and participatory processes. The WHO, in its advocacy guide to counter the epidemic of chronic diseases, highlights the need to engage those capable of influencing community such as community leaders, teachers, and professionals, and even popular athletes and entertainment personalities.
      WHO
      Stop the global epidemic of chronic disease: A practical guide to successful advocacy.
      The WHO regional office for the Americas initiated a series of workshops with the aim to build alliances between communities and stakeholders.
      Participating healthcare professionals and stakeholders generated key recommendations to improve local health programs.
      WHO
      Stop the global epidemic of chronic disease: A practical guide to successful advocacy.
      Chief among the recommendations was to better train health personnel and to create an advisory group to advocate for better communication and linkages between the public and healthcare professionals. Improved training procedures and the introduction of technologic tools and solutions such as mobile technologies might assist practitioners in incorporating additional elements of the ECCM, even in very-low-resource countries.
      Providers and healthcare organizations also must find and target those who could benefit from interventions by providing services and information where the individuals already are. Healthcare organizations also must forge partnerships with atypical organizations and settings in their communities where individuals live, work, and recreate. Cancer prevention and control interventions successfully have reached vulnerable, at-risk populations in social service agencies, laundromats,
      • Kreuter M.W.
      • Black W.J.
      • Friend L.
      • et al.
      Use of computer kiosks for breast cancer education in five community settings.
      beauty parlors,
      • Linnan L.
      • Ferguson Y.O.
      Beauty salons: a promising health promotion setting for reaching and promoting health among African American women.
      and other settings. Because patients spend less than 1/1000 of their lives in contact with healthcare systems,
      • Fisher E.B.
      • Brownson C.A.
      • O'Toole M.L.
      • Shetty G.
      • Anwuri V.V.
      • Glasgow R.E.
      Ecological approaches to self-management: the case of diabetes.
      opportunities to prevent disease and support health must be ubiquitous and integrated into daily life. The responsibility for obtaining care and preventive services cannot rest solely with individuals.
      Much work has been done to integrate HIV screening and treatment services into maternal and child primary care services.
      • McNairy M.L.
      • Melaku Z.
      • Barker P.M.
      • Abrams E.J.
      Leveraging progress in prevention of mother-to-child transmission of HIV for improved maternal, neonatal, and child health services.
      Further integration of primary and preventive care would identify additional opportunities to include PrEP in existing primary or prevention services. In addition, health organizations must perform outreach in other settings. Community health workers are an increasingly popular strategy to reach patients outside of the clinical setting to, for example, facilitate adherence to HIV/AIDS treatment medications.
      • Kenya S.
      • Chida N.
      • Symes S.
      • Shor-Posner G.
      Can community health workers improve adherence to highly active antiretroviral therapy in the USA? A review of the literature.
      Peer counselors, community health workers, and cell-phone reminders are among the strategies that potentially can enhance adherence even in very-low-resource settings.
      With the rapid adoption of “treatment as prevention” by the WHO and the President's Emergency Plan for AIDS Relief
      • Cohen M.S.
      • Holmes C.
      • Padian N.
      • Wolf M.
      • Hirnschall G.
      • Lo Y.R.
      • Goosby E.
      HIV treatment as prevention: how scientific discovery occurred and translated rapidly into policy for the global response.
      and the mounting evidence of the efficacy of PrEP, these exciting new technologies are primed for widespread implementation. Despite the promise of these biomedical prevention technologies, practitioners continue to advocate for combination strategies that integrate behavioral, biomedical, and structural interventions
      • Coates T.J.
      • Richter L.
      • Caceres C.
      Behavioural strategies to reduce HIV transmission: how to make them work better.
      into a “third wave”
      • Sepulveda J.
      The “third wave” of HIV prevention: filling gaps in integrated interventions, knowledge, and funding.
      of HIV prevention. The ECCM provides an opportunity for this integration, as it provides a framework for addressing the social determinants of health and creating activated communities (not just activated patients) with three components: build healthy public policy, create supportive environments, and strengthen community action (Figure 1). Future implementation of PrEP should look to combine the technology with other structural interventions.

      Additional Lessons Learned from Self-Management Models and Related Strategies

      Additional lessons have been learned from the implementation of tools and technologies to support self-management for one particular chronic disease, diabetes. These lessons learned reveal a set of common elements that can inform the development of similar tools for PrEP. These elements, described below, emphasize collaboration, and support patient activation and shared decision making of patients with their healthcare teams.
      • Glasgow R.E.
      Interactive media for diabetes self-management: issues in maximizing public health impact.

      Appropriate Framing

      Successful self-management interventions include appropriate framing explanations that provide context for and motivate introduction for the participants.
      • Glasgow R.E.
      Interactive media for diabetes self-management: issues in maximizing public health impact.
      • Lakoff G.
      The political mind: a cognitive scientist's guide to your brain and its politics.
      For example, effective interactive interventions such as web-based expert systems
      • Strecher V.
      Internet methods for delivering behavioral and health-related interventions (eHealth).
      explain the rationale for the intervention and are tailored to or representative of various cultural groups. Application of Leventhal's model in a group of Chinese immigrants in the U.S.
      • Jayne R.L.
      • Rankin S.H.
      Application of Leventhal's self-regulation model to Chinese immigrants with type 2 diabetes.
      revealed the necessity of understanding and addressing a population's conceptualization of a disease. This work illuminated attitudes held by the respondents and identified potential places of intervention settings to reframe the participants' interpretation of their illness.
      Two particular results of this work provide cautionary tales for the implementation of PrEP. First, many participants equated the acuteness of their symptoms with the seriousness of the disease. As the objective of PrEP is to prevent disease, it is important to recognize that those who take it will be asymptomatic, as are many people with diabetes or hypertension. Expecting asymptomatic individuals to maintain a daily medication regimen that does not provide symptom relief is challenging for PrEP.
      • Karim S.
      • Baxter C.
      Antiretroviral prophylaxis for the prevention of HIV infection: future implementation challenges.
      Second, many of the Chinese immigrants studied by Jayne and Rankin
      • Jayne R.L.
      • Rankin S.H.
      Application of Leventhal's self-regulation model to Chinese immigrants with type 2 diabetes.
      expressed fatalism toward diabetes and skepticism about the efficacy of treatments. Fatalism might be an important element guiding behavior in the context of HIV/AIDS for both healthcare providers
      • Steward W.T.
      • Koester K.A.
      • Myers J.J.
      • Morin S.F.
      Provider fatalism reduces the likelihood of HIV-prevention counseling in primary care settings.
      and lay members of a community.
      • Nemeroff C.J.
      • Hoyt M.A.
      • Huebner D.M.
      • Proescholdbell R.J.
      The Cognitive Escape Scale: measuring HIV-related thought avoidance.
      Assessing these attitudes toward HIV/AIDS will be important to ensure that individuals maintain adherence to PrEP regimens.

      Consideration of Health Literacy and Numeracy

      An emerging issue in both prevention and chronic illness management is health literacy and numeracy. In particular, a great deal of prevention involves understanding and appreciating health risks.
      • Wallace A.S.
      • Seligman H.K.
      • Davis T.C.
      • et al.
      Literacy-appropriate educational materials and brief counseling improve diabetes self-management.
      IOM
      Health literacy: a prescription to end confusion.
      The challenge is that many people, including healthcare providers,
      • Rothman R.L.
      • Montori V.M.
      • Cherrington A.
      • Pignone M.P.
      Perspective: the role of numeracy in health care.
      do not understand even simple percentages and probabilities, so health communications must be tailored carefully, including risk statements, graphs, and visual displays, and presented in ways that can be understood by the target audience. Low health literacy has been linked specifically to non-adherence in patients receiving antiretroviral treatment medications for HIV/AIDS.
      • Wolf M.S.
      • Davis T.C.
      • Osborn C.Y.
      • Skripkauskas S.
      • Bennett C.L.
      • Makoul G.
      Literacy, self-efficacy, and HIV medication adherence.
      • Osborn C.Y.
      • Paasche-Orlow M.K.
      • Davis T.C.
      • Wolf M.S.
      Health literacy: an overlooked factor in understanding HIV health disparities.
      A similar link between health literacy and PrEP would have implications for the way information about the dosing and administration of prophylaxis is communicated. Work on presenting risk information in ways that is meaningful and personally relevant to intended users, possibly including stories and ideograms, is indicated.
      • Fagerlin A.
      • Zikmund-Fisher B.J.
      • Ubel P.A.
      • Jankovic A.
      • Derry H.A.
      • Smith D.M.
      Measuring numeracy without a math test: development of the Subjective Numeracy Scale.

      Choice

      Lessons learned across a series of diabetes self-management studies include
      • Glasgow R.E.
      Interactive media for diabetes self-management: issues in maximizing public health impact.
      provision of a menu of choices from which the participant could select. Recommended actions or strategies also included alternatives, so that individuals could receive guidance while also achieving self-determination.
      • Williams G.C.
      • Lynch M.
      • Glasgow R.E.
      Computer-assisted intervention improves patient-centered diabetes care by increasing autonomy support.
      Providing such choices enhances collaborative decision making, user engagement, and commitment to the chosen strategy. In the case of PrEP, choice may be offered to participants as the science develops through the route of administration (oral tablet versus vaginal gel); dosage (e.g., daily, weekly, or intermittently with sexual activity); or through the type of reminders that support adherence (e.g., cell phone vs Internet-based).

      Problem-Solving Support

      Problem-solving support has been a key component of interactive diabetes self-management interventions.
      • Glasgow R.E.
      Interactive media for diabetes self-management: issues in maximizing public health impact.
      • Lorig K.R.
      • Holman H.R.
      Self-management education: History, definition, outcomes, and mechanisms.
      Interventions help participants set goals, identify barriers, and create strategies for overcoming them, often through the use of action plans. Once an action plan is established, an interactive intervention keeps it constantly available to patients for review or revision. Goals should be simple and achievable and provide for self-monitoring with immediate feedback. As Underhill and colleagues
      • Underhill K.
      • Operario D.
      • Skeer M.
      • Mimiaga M.
      • Mayer K.
      Packaging PrEP to prevent HIV: an integrated framework to plan for pre-exposure prophylaxis implementation in clinical practice.
      point out, PrEP will only succeed as a prevention strategy if those taking the medication also do not engage in increased risky sexual behaviors, erroneously believing that PrEP is 100% effective, a phenomenon known as risk compensation. Goals and action plans should help individuals maintain healthy behaviors in addition to medication adherence.

      Three-Way Feedback and Communication

      A key issue that cuts across all these elements is the need for multidirectional communication and feedback systems. For example, activated citizens and communities inform the messages, frames, and tools that are developed. Similarly, proactive engagement and facilitation of community support does not mean simply making referrals to patients; rather, it means working with patients to prioritize needed services and to identify and overcome barriers faced in connecting to them. Activated people and communities do not respond simply to disease; rather, they engage in activities that shape their care, as well as the environments in which they live, to promote healthy living.
      Technologic advances have facilitated the development of such three-way feedback and communication systems among patients, healthcare providers, and community programs. Healthcare professionals now have the opportunity to escape the demanding and limited face-to face traditional medical communication, permitting the adaption of new tools that support frequent and remote communications. These advances have the potential to improve communication that will result in better-informed patients, higher-quality care, evolving community programs, better outreach, and improved adherence. For example, mobile telephone–based behavior-change interventions have shown promise for the management of a variety of clinical conditions.
      • Fjeldsoe B.S.
      • Marshall A.L.
      • Miller Y.D.
      Behavior change interventions delivered by mobile telephone short-message service.
      In the field of HIV/AIDS, mHealth tools (the use of mobile and wireless technologies; www.hrsa.gov/healthit/mhealth.html)
      DHHS, Health Information Technology and Quality Improvement
      What is mHealth?.
      increasingly have been used to encourage testing and other preventive behaviors, as well as to promote and monitor medication adherence.
      • Swendeman D.
      • Rotheram-Borus M.J.
      Innovation in sexually transmitted disease and HIV prevention: internet and mobile phone delivery vehicles for global diffusion.
      • Wise J.
      • Operario D.
      Use of electronic reminder devices to improve adherence to antiretroviral therapy: a systematic review.
      Wide-scale implementation of PrEP can benefit from the development of similar tools and technologies, which will ensure frequent communication among patients, healthcare providers and community programs, and enhance three-way communication and provide ongoing support for patients outside the clinic setting. Table 1 provides a summary of the lessons learned from diabetes self-management interventions, as well as key elements of the Enhanced Chronic Care Model.
      Table 1Elements of successful diabetes self-management interventions applicable to pre-exposure prophylaxis
      Appropriate framing
      Consideration of health literacy and numeracy
      Choice
      Problem-solving support
       Identify barriers
       Set simplified, achievable goals
       Create action plans
      Proactive engagement
      Peer, community, and follow-up support
      Three-way feedback and communication

      Discussion

      Implementation-Science Implications for HIV/AIDS Prevention

      The ECCM, as demonstrated above, may be quite useful for the broader implementation of PrEP. It provides an opportunity to address adherence challenges and presents a platform for launching combination prevention strategies. The ECCM has clear applicability to real-world questions, and here it is presented explicitly as an implementation-science model. In Table 2 and Figure 2, the ECCM and its components are mapped to RE-AIM (reach, effectiveness, adoption, implementation, and maintenance) and the EIT (evidence integration triangle), which are, respectively, established and emerging implementation-science models. These models suggest concrete ways to support comprehensive and evidence-based implementation for HIV/AIDS prevention and treatment programs.
      Table 2Suggestions and examples from the RE-AIM framework for guiding and assessing elements of the ECCM
      • Steward W.T.
      • Koester K.A.
      • Myers J.J.
      • Morin S.F.
      Provider fatalism reduces the likelihood of HIV-prevention counseling in primary care settings.
      ComponentsProgram characteristicsRE-AIM
      Organization of care (health system support)Political support and visible leadership

      Organization, mission, and management that ensures accountability and quality improvements
      Adoption: compatibility with existing management systems, mission, and priorities across all management levels
      Clinical information systemsExpanding or establishing registries outlining disease-risk profiles and patient's adherence, disease progress

      Allows for the flow of clinical information using databases and communication tools among patients, care teams, and community

      Incorporate unconventional tools such as social websites and local infrastructures

      Utilize lessons learned from other disease models such as diabetes and heart disease
      Reach: user-friendly personal health record interfaces; low-literacy/low-numeracy options

      Effectiveness: coordinates priorities across providers/settings, providers panel, clinic and registry level, as well as patient-level summaries

      Implementation: should evolve over time; utilize resources; reduce duplication and costs; make evidence-based adaptation
      Delivery-system designBuild relationships to increase the probability of follow-up and adherence

      Train providers to understand and use social capital and available infrastructure

      Frequent and proactive interaction with patients (e.g., invitation to clinics, follow-up calls, providing information)
      Implementation: reminders and prompts to both patients/family and the healthcare team

      Maintenance: prompts for following up and early-warning systems ensuring adequate response
      Decision supportIncorporate innovative communication and follow-up tools such as cell phones, online tools, incorporating technologic advances (e.g., locally appropriate frameworks, hardware, and software, to facilitate interactions and improve information availability and transparency)

      Use evidence-based guidelines and tools
      Effectiveness: prompts and feedback for patient, family, and for healthcare team

      Treatment algorithms should include patient-reported measures and preferences
      Self-management support

       Development of personal skills for healthy behavior and better coping

       Enhancing communication skills and providing adequate sources of reliable information

       Utilizing new technologies and tools to ensure better follow-up and two-way interactions
      Socially, culturally, literally and economically appropriate tools to help educate patients and remind them of appointments, medications, and so on

      Providing face-to-face or telephone communication and counseling

      Providing clear instructions for therapy intake and disease manifestation (potential symptoms)

      Support practical and innovative tools to train, support, and empower patients

      Enhancing adherence via monetary or other incentives

      Options for group medical visits and home visits by health workers when appropriate
      Reach: options for modality and action planning should be available

      Effectiveness: standard use of goal-setting, shared decision making, and action planning/problem solving should be incorporated routinely into all contacts
      Community resources

       Policies that enhance and protect the public health

       Proactive and empowered community

       Social and physical environment that fosters and supports healthy behavior
      Engage community stakeholders and utilize available infrastructure

      Utilize social resources not only limited to healthcare organizations including assets of the civil society at large (e.g., buildings, available skilled workers, society leaders, communication methods such as the Internet, cell phones, land lines, and patient navigator)

      Implement steps to gain community trust and encourage buy-in

      Ensure community participation in the development of comprehensive and sustainable care model

      Install mechanisms for frequent feedback and evaluation. Ensure flexibility to change or modify current strategies based on evidence
      Reach: engage patients who do not come to medical office often

      Effectiveness: two-way feedback on patient experience with community resources relayed back to healthcare team

      Maintenance: offer support resources in natural environment where patients face barriers
      ECCM, Enhanced Chronic Care Model; RE-AIM, reach, effectiveness, adoption, implementation, and maintenance
      Figure thumbnail gr2
      Figure 2Evidence integration triangle for HIV/AIDS
      RE-AIM, reach, effectiveness, adoption, implementation, and maintenance
      Table 2 summarizes key components of the ECCM and also lists key program characteristics, as well as RE-AIM considerations, for program planners and evaluators. The program characteristics are self-explanatory examples and suggestions. RE-AIM is an implementation-science model that directs attention to five key issues or challenges faced when disseminating programs or policies
      • Gaglio B.
      • Glasgow R.E.
      Evaluation approaches for dissemination and implementation research.
      • Kessler R.S.
      • Purcell E.P.
      • Glasgow R.E.
      • Klesges L.M.
      • Benkeser R.M.
      • Peek C.J.
      What does it mean to “employ” the RE-AIM model?.
      : reach, effectiveness, adoption, implementation, and maintenance. The third column on RE-AIM includes a “checklist” of multilevel issues involved in the successful large-scale implementation and dissemination of programs, as well as providing more examples.
      Figure 2 summarizes key points and implications from the EIT,
      • Glasgow R.E.
      • Green L.W.
      • Taylor M.
      • Stange K.C.
      An evidence integration triangle for aligning science with policy and practice.
      which is particularly relevant for tools such as PrEP where efficacious interventions do not seem to be effective when applied in broader situations. There are several implications of the EIT for HIV/AIDS prevention and management programs. The first is that all interventions reside within a complex multilevel context; and that successful programs fit this historical, political, cultural, and economic context and are built around both early and ongoing engagement of key stakeholders and evidence-based strategies.
      Second, the EIT asserts three separate but highly interrelated components, each of which is necessary but not sufficient: evidence-based programs and policies, practical measures of progress, and participatory implementation processes. It is not enough to have an evidence-based program without the other two components. The success of programs such as Partners in Health
      Partners in Health.
      can be understood as results of these three components, as can the much less limited success of programs that emphasize one or two of the EIT components to the exclusion of the other factors. Continual, ongoing feedback, refinement, and strong interconnectedness are the hallmarks of the EIT model.

      Conclusion

      Models of chronic illness care and implementation science that emphasize integration and three-way communication among citizens, healthcare systems, and community settings provide useful recommendations for HIV/AIDS prevention and treatment programs. Especially important is consideration of the multilevel context that includes not only social, cultural, and community factors but also individual characteristics such as personal illness models and health literacy/numeracy. The ECCM has proven useful for prevention and management of many other chronic conditions
      • Glasgow R.E.
      • Orleans C.T.
      • Wagner E.H.
      • Curry S.J.
      • Solberg L.I.
      Does the Chronic Care Model serve also as a template for improving prevention?.
      and should be useful in HIV/AIDS also.
      Implementation-science models in general, and RE-AIM and the EIT in particular, imply concrete actions that can be taken to enhance the adoption, implementation, success, and sustainability of HIV/AIDS prevention and treatment programs. Of central relevance is establishment and use of a system of ongoing, multilevel feedback from practical measures of progress. These measures are used to adjust evidence-based programs based on data and attention to key implementation and dissemination issues such as reach, equity, and cost effectiveness. The implications and recommendations from the ECCM, the EIT, and self-management models delineated above should be subjected to both experimental and practical testing. These frameworks offer hope and directions for the successful, evidence-based implementation and adaptation of current HIV/AIDS prevention and treatment strategies, and suggestions for incorporation of new and emerging technologies and tools such as cell phones.
      Publication of this article was supported by the CDC through the Association for Prevention Teaching and Research (CDC-APTR) Cooperative Agreement number 11-NCHHSTP-01.
      No financial disclosures were reported by the authors of this paper.

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