Summary of PEPFAR State of Program Area (SOPA): Care & Support Prepared by E. Michael Reyes, MD, MPH (Original SOPA is a 45 page document) Introduction: Care and Support refers to the broad array of non-art services (clinical, psychological, social, spiritual and preventive) that may be offered to HIV-infected and affected individuals under PEPFAR. Program Area Overview: Key elements of a strong care and support program are interventions that lead to: Early identification of HIV-infected persons, referral and retention in care. Reduction of HIV-related morbidity and mortality o Provision of cotrimoxazole (CTX) prophylaxis o Screening for and management of TB o Nutrition assessment support o Interventions to improve water, sanitation and hygiene (WaSH) o Malaria prevention o Cervical cancer screening o Diagnosis and management of cryptococcal disease Improved quality of life o Pain management o Implementation of a palliative care approach Reduction of transmission of HIV infection from HIV-infected to uninfected persons o Reference PwP SOPA Each of the above program elements is/should be supported within a framework of key cross cutting considerations, including the need to: 1. Support services that are evidence-based, reflect appropriate prioritization of scarce resources, and are supported by international/national guidelines. 2. Expand coverage and provide services equitably, both with respect to geography and target populations. 3. Appropriately adapt the package of services to national and local situations and target populations. 4. Support services within the context of sustainable improvement in health systems. 5. The need to improve quality of programs, and 6. The need for appropriate monitoring and evaluation. The SOPA contains
Table 1A: Current Status of Key Program Elements (linked to 4 bullets above) Table 1B: Summary Information about Current Status of Key Cross-Cutting Elements (linked to 6 elements above) Promising Practices (PP), Lessons Learned (LL), Challenges/Emerging Issues (EI) and Future Directions Presented in extensive Table 2A by Program Element. Highlights include: Program Element PP/LL Challenges/EI Future Directions 1. Identification of persons with HIV, link to service, retention in care 2. Reduction of HIVrelated morbidity and mortality Cotrimoxazole Home testing programs in Uganda High rates of retention in settings with close community follow-up (Kenya, Uganda) Reduced barriers to access via decentralization of services, evening and weekend service hours, coordinating care for multiple family members Collaborative efforts to quantify national cotrimoxazole needs (Namibia, Mozambique) Home-based testing with direct linkage to CTX prescription (Uganda, Kenya) Nutrition Assessment of workflow in care clinics as it relates to implementation of nutritional assessment, counseling and support Water, Sanitation and Hygiene (WaSH) Cervical Cancer Screening Promotion of safe water, sanitation and hygiene in home based care. Integration of safe water interventions in clinical settings Zambia experience with cervical cancer screening: Education about cervical cancer, importance of screening Training nurses to conduct cervical exams Models make use of internet technology to allow for consultation with experts in rural settings Novel approaches to QA including use Most people don t know their HIV status; Cost, inconvenience, stigma and lack of understanding of benefits of care Limited information on interventions to improve referral and retention in different cultures Rates of effective referral and retention are rarely measured Lack of understanding of CTX importance by patients and providers Quantification challenges because CTX is not just used for prophylaxis. Concerns regarding locally manufactured products Limited availability of job aids, specifically dosing tools for children Challenge of adding nutrition assessment and responsibilities to overstretched health care workers No well developed systems for monitoring quality of nutrition activities Not all countries recognize importance of water, sanitation and hygiene services Not all countries have access to proper commodities for WaSH interventions There is a relative lack of training materials related to good hygiene practices Current international guidelines call for PAP smear approaches to screening (impractical) Lack of knowledge about promising single visit approaches Gaps in evidence regarding effectiveness of screen and treat approaches in women Expand efforts to address identified barriers in individual care settings Gather in additional information on interventions that improve linkage to and retention in care Consider PHE to address retention in care Support additional national CTX quantification efforts Continued advocacy for CTX via training programs, workshops with target audience of both providers and recipients SI and program working closely to develop strategies to track and report provision of CTX Support continued development of food by prescription programs Support expansion of nutritional assessment and counseling in all programs, regardless of food provision. Specifically promote hand washing with soap Develop and implement tools for assessment of needs related to WaSH at household and community levels Develop improved training materials and job aids for home based care workers and clinicians. Educate about/advocate for single visit screening approaches Support efforts to coordinate stakeholders in each country Support study tours and country-to-country exchange Ensure that pilot programs
of digital photography Cryptococcal Disease Training in cryptococcal diagnosis, development of lab SOPs (Mozambique) Pfizer donation program makes a key treatment drug, fluconazole, available to countries. 3. Improved Quality of Life Pain Assessment Regional meetings in Rwanda and Namibia have been useful in promoting pain assessment; have led to identification of point people in ministries. In Uganda, focused advocacy has led to establishment of comprehensive pain management services in some settings. Palliative Care Approach Uganda, Zimbabwe, South Africa, Tanzania models for comprehensive, facility-based HIV/AIDS palliative care sites offering community level home based care services Model palliative care curriculum (preservice and in-service) as well as distance based diplomas has been developed in South Africa. Development of a pocket guide for the delivery of comprehensive palliative care services in HIV clinic settings 4. Reduction of transmission (PwP) A number of behavior change interventions, based in the US, have demonstrated impact on reducing high risk behavior; intervention and tools being adapted in PEPFAR countries. with HIV Gaps in human capacity, commodities needed for screening and management of women with advanced disease Lack of commodities and human capacity to diagnose cryptococcal disease Limited training materials Optimal approach to supporting training in cryptococcal diagnosis is unclear Mortality is high; need to develop approaches to earlier recognition Ongoing need for advocacy; identification of point persons; development of national policies Need for monitoring systems to see whether pain assessment is being done. Expanding the number of specialty palliative care providers in current PEPFAR countries Integration of palliative care services and providers into generalized HIV care and treatment programs. Integrating a quality of care approach within standard medical and nursing school curriculum Lack of pediatric trained palliative care providers Interventions to date target clinical settings; HIV transmission occurs during all stages of HIV have adequate quality assurance efforts Support more structured evaluation due to limited data on cervical cancer in women with HIV in developing countries Care and Support TWG working with Lab TWG to review, develop and adapt appropriate training materials Further training in lab capacity Assist countries with documentation of disease burden Continue supporting and developing policies related to opioid administration. Improved delivery of palliative care services among IDUs requiring opioid access for pain and addiction/recovery Improved integration of mental health services and providers within palliative care programs. Establishment of pediatric palliative care models and training institutions/sites. Discussed in PwP SOPA Presented in extensive Table 2B by Cross Cutting Issues. Cross Cutting Issue PP/LL Challenges/EI Future Directions 1. Evidence based services Costing exercises Portfolio reviews at country level Collaborations with WHO on guideline development Lacking information about how best to package and prioritize these interventions to have maximum impact WHO requires a time consuming approach to guideline development without; lacks key resources to support this. Assessing multiple services cost per client is challenging. Continue to collaborate with WHO/country programs/mohs to develop guidelines for specific complications of HIV Need further cost exercises to establish more costeffective approaches to providing care services. More country-to-country sharing related to prioritization, adaptation, dissemination and implementation of guidelines.
2. Expand coverage and provide services equitably 3. Adapt the package of services to national and local situations 4. Support services within the context of sustainable improvement in health systems 5. Need to improve quality of program 6. Need for appropriate monitoring and evaluation Access to services has expanded rapidly Mapping of services in relation to need and careful regional assignment of partner responsibilities have improved equity WHO Operations Manual in development for primary care centers Key Health Systems Strengthening Elements: assuring adequate numbers of competent health care workers; functional network models ; and reliable sources of commodities. Human capacity has increased tremendously through a variety of training approaches Overall capacity of local institutions has been expanded substantially (Ministries, NGOs/CBOs). Mapping of home based care programs in the catchment areas of health facilities Multiple examples of effective approaches to improving quality services including training, support for commodity provision CQI activities have been incorporated into many programs. Hot or warmline access to expert HIV providers to assist in rural areas (Zambia) Performance-based financing as a promising approach to service provision (Rwanda) Approaches to disaggregating persons receiving care and support according to HIV status (e.g. Nigeria, South Africa) Where service providers overlap, monitoring partners have developed approaches to de-duplication of program results. Limited resources limit ability to achieve universal access. Challenges of linkage to/retention in care limit ability to ensure service delivery Cultural barriers to achieving gender equity in services access Knowledge gaps about how to optimally prioritize and package interventions. Large knowledge gaps about packages of appropriate interventions for specific target groups including children, adolescents, pregnant women, and MARPs. Resource limitations still constrain progress Development of effective network models is limited by weak communications infrastructure, limited resources for transportation Constraints of time, resources and health care worker shortages Few care and support programs have integrated quality assessment components or CQI activities Data regarding program performance may not be returned to programs to support improvements. Lack of ability to disaggregate program results by HIV status hampers ability to assess coverage, equity, etc. Lack of unique identifiers, common names, and use of different names at different times make it challenging to de-duplicate program results. Technical Working Group has not been able to conduct systematic assessments of all country programs beyond COP reviews; lacks human capacity to make visits to all countries. Mapping of available services in relation to need Use of geographic data for program planning Disaggregation of program results by age Continue to support countries to adapt interventions based on epidemiologic data Conduct evaluation of adapted packages Adapt and implement WHO Operations Manual in different countries Facilitate sharing of country experiences Support development of country-level strategies to improve pre-service training and implementation of task shifting Support efforts to improve planning and coordination activities between local government, HIV treatment and care facility sites and community and home based care providers at the district levels Provide guidance to countries that outlines a comprehensive approach to quality assessment and improvement, including activities such as case observation, supportive supervision, clinical mentoring, HIVQUAL, performance-based financing and ongoing training of health care and community providers. Standardize criteria for counting both HIVinfected and HIV-affected persons receiving care New PEPFAR II indicators will be helpful re: separate reporting of HIV-infected and HIV-affected persons receiving care reducing duplicate counting. Work more closely with Strategic Information both at HQ and in the field. Apply an already developed standardized tool to assess progress in care and support at the country level. Prioritize areas for program evaluation and possibly develop protocols, which can be adapted by
countries. Future Directions: Areas of Emphasis for 2009 Very highest priority interventions o Enrollment and retention in care o Provision of cotrimoxazole o Assessment and management of pain o Screening and 3 services covered by other SOPAs: screening/treatment of TB, assessment, management of nutrition, and prevention of onward transmission of HIV. Highest priority target populations: o General HIV infected population o Need for continued focus on special services for women, pregnant women and children o Need to develop services for other special populations (e.g. adolescents, Most At Risk Population groups) As PEPFAR resources level off, may be need for more emphasis on care and support interventions; Continued focus on health systems strengthening and transition to local partners; this includes development of partnership frameworks Transition to virtual technical assistance (rather than in-person TA) The SOPA includes no reference citations.