Uaaine Breast Cancer Assishnce Project Final Report USAID Cooperative Agreement No. EE-A 00-97-00003-00 Submitted by: c . I.. 4 Nickerson Street Seattle, Washington 98109 U.S.A December 2000 TABLE OF CONTENTS EXECUTIVE SUMMARY ................................................................................................ 1 OVERVIEW OF PROJECT ............................................................................................. 4 ASSESSMENT FINDINGS .......................................................................................... 5 MAJOR PROGRAM COMPONENTS ....................................................................... 7 Training for Health Care Providers Provision of Equipment and Supplies Patient Understanding and Public Awareness Strengthening the Health In&-astructure Influencing Policies and Practice Guidelines PROJECT MONITORING AND EVALUATION .............................................................. 32 COST-SHARE CONTRIBUTIONS............................................................................... 43 LESSONS LEARNED .................................................................................................44 FOLLOW-ON NEEDS .................................................................................................... 45 CONCLUSIONS ......................................................................................................... 47 ATTACHMENTS Project Team Project Training Events Equipment and Supplies Purchased and Donated Materials Developed by Project, and Distribution Chart Regional Exchanges for Psychosocial Support Position Paper #I: Clinical Breast Examination as the Primary Breast Cancer Screening Tool for Ukraine (2000-2005) Early Detection of Breast Cancer in Ukraine: Strategies and Lessons Learned for Future Planning Position Paper #2: One View Vs. Two Views in Screening Mammography Position Paper #3: Breast Cancer Survivors in Ukraine: Complementing the Work of Medical Providers Radiotherapy Assessment and Recommendations Project Indicators Chart EXECUTIVE SUMMARY From January 1997 through September 2000, PATH implemented a US$3.8 million, US AID-funded project to strengthen breast cancer services in Ukraine. The Ukraine Breast Cancer Assistance Project had the following key goals: improving the quality of breast cancer services for screening, diagnosis, and treatment and rehabilitation; optimizing the utilization of these services among women at risk, especially among women exposed to radiation from the Chornobyl accident; and enhancing the cost-effectiveness of services within existing facilities and current resource constraints. The general strategies for achieving these goals were: exchanging professional knowledge and skills; enhancing the availability of essential equipment and supplies; increasing patient understanding and public awareness of breast cancer; strengthening the health infrastructure; and refining relevant policies and practice guidelines. PATH'S Ukrainian partners in the project were breast cancer diagnosis and treatment centers in Kyiv, Chernihiv, Odesa, and Lviv and the Pathology and Oncology Departments of Lviv State Medical University. The project team consisted of PATH staff and consultants based both in Seattle and in Kyiv. The major program components included: Trainingfor Health Care Providers. A variety of methods were employed to expose health workers to new ideas and techniques. These took place both within Ukraine and abroad, and included a U.S. study tour, fellowships, skills workshops, medical symposia, conferences, and medical literature dissemination. Provkion of Equipment and Supplies. The following key pieces of equipment were supplied: four mammography units and film processors mammography film, chemicals, accessories one ultrasound machine pathology equipment (e.g., microscopes), reagents and supplies, hormone receptor test kits surgical equipment and supplies seven computers, two slide projectors, three fax macliines, two VCWs thirty courses of chemotherapy Patient Understanding and Public Awareness. PATH developed and disseminated informational materials and facilitated public awareness campaigns to increase Ukrainians' understanding of breast cancer. This focus broadened later to encompass innovative and surprisingly successful survivor support and outreach programs. Strengthening the Health Infrastructure. PATH aided the National Cancer Registry in its efforts to upgrade by providing a computer and fax-modem, limited technical assistance, and subcontracts to support travel and assistance by central registry staff to oblast registry staff. As part of the pilot breast cancer early detection program in Chernihiv, the local health information system was modified on a test basis to collect data on the outcome of clinical breast exams. Influencing Policies and Practice Guidelines. An important intention of the project was to help influence national and local policies and practice guidelines related to breast cancer in several areas. Progress was achieved to varying degrees in the following selected policy or practice areas: demonstration of an early detection strategy in a pilot area using both clinical breast exam (CBE) and mammography; demonstration of an international standard-dose chemotherapy regimen through a clinical trial demonstration of the value of immunocytochernistry (KC) methods for better pathology diagnosis; demonstration of the feasibility of survivor outreach and advocacy initiatives; assessment of radiotherapy capacity and recommendations for improvement; and modification of surgical approaches to breast cancer and benign breast disease. Cost-Share Contributions. PATH was able to leverage USAD funding by raising US$413,354 in direct donations and in-kind contribution of goods and services from non-federal sources. This exceeded the required contribution ($263,440) by 57 percent. Lessons Learned Clinical Care. Medical approaches from other areas should not be adopted without careful analysis of their appropriateness to the Ukrainian situation. Some of the reasons for the differences between clinical practices in Ukraine and those in the United States are discussed in the report. A team approach to clinical care is feasible and cost-effective within Ukraine. Effective clinical care depends upon the coordination of services including reliable pathology, appropriate surgical care, chemotherapy, and radiotherapy. Psychosocial Support. Most breast cancer patients want to be told their diagnosis. Although Ukrainian physicians still do not always tell patients that they have cancer, many patients know their diagnosis and want to communicate more openly with health care professionals about their disease. Working from that information, PATH was able to catalyze change promoting psychosocial support among breast cancer survivors by proceeding from a scientific basis, facilitating the efforts of the women themselves, and linking the survivors with established international groups. RegionalLinks. Links with neighboring countries in the region provide useful and relevant experience and knowledge. Ukrainians have developed contacts and growing connections with colleagues and volunteer partners from Poland, the Czech Republic, Russia, and Belarus. Encouragement of regional activities is strategically effective. because the people of the region have experienced common problems and organizational structures in recent history. Follow-on Needs The following areas of need were identified during the project, and remain to be fully addressed as the project closed. They are discussed in detail further in the report. Medical Training and Education Equipment and Supplies Quality Control for Mammography, Radiotherapy, and Pathology Support for Maintaining Regional Linkages Training and Organizational Support for Survivor Groups There are good reasons to believe that many of the project achievements described in this report are sustainable beyond the life of the project. For example: all the training activities of the project represented investments in Izuman capacities that will last long after the project's end; health workers, patients, and the general public were all exposed to new ideas that will influence their perceptions and attitudes for years to come; specific tools such as the various curricula, learning aids, print and audiovisual materials, and equipment will remain in use and continue to provide benefit; the establishment of instihltional structures like the breast cancer survivor groups that have registered as NGOs and the Early Detection working group, the strengthening of the cancer registries, and the development of the clinical-trials capacity in Odesa represent achievements that are embedded in Ukrainian structures that have a life of their own. We feel strongly that the success of this project is due not only to the work of the entire PATH team and our Ukrainian partners, but to all the individual medical workers, patients, and community members in Ukraine who opened their minds to consider new possibilities and contributed their ideas and efforts toward our common goal of helping to reduce the impact of breast cancer on the women of Ukraine. Benefits Beyond Breast Cancer In addition to the project's significant achievements in improving breast cancer care, many of the activities and practices introduced and encouraged by this project have attributes with immediate carry- over and relevance to other areas of Ukrainian health care. OVERVIEW OF PROJECT From January 1997 through September 2000, PATH