The Breast and Cervical Cancer Mortality Prevention Act of 1990 * authorized CDC to establish the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) to increase screening services for women at low income levels who are uninsured or underinsured (1). Although the NBCCEDP covers most diagnostic services that women need after receiving an abnormal mammography or Papanicolaou (Pap) test result, the program does not reimburse for breast biopsies. In addition, the Act prohibits the use of NBCCEDP funds for cancer treatment. Participating health agencies must ensure that NBCCEDP clients receive timely, appropriate diagnostic and treatment services. In 1996, CDC began a case study to determine how early detection programs in seven participating states (California, Michigan, Minnesota, New Mexico, New York, North Carolina, and Texas) identified resources and obtained diagnostic and treatment services. This report summarizes the results of the study (2), which indicate that respondents in these states reported that treatment had been initiated for almost all NBCCEDP clients in whom cancer was diagnosed. However, respondents also considered the strategies used to obtain these services as short-term solutions that were labor-intensive and diverted resources away from screening activities.

In the seven states, NBCCEDP-sponsored screening services had been provided for greater than or equal to 3 years, and breast cancer had been diagnosed in greater than or equal to 60 women. The states were selected to provide a range of geographic locations, a combination of urban and rural populations, and racial/ethnic diversity among program clients. Researchers conducted semi-structured interviews with 192 persons affiliated with the seven state programs. Of these interviewees, 120 (63%) were providers of screening, diagnostic, and/or treatment services; 58 (30%) were state program staff; and 14 (7%) were coalition members. Interviews included topics such as guidelines related to diagnostic and treatment services, strategies used to obtain and pay for services, level of effort required to secure these services, and changes in strategies over time. Each interview was tape recorded and transcribed. Using a systematic scheme derived from the research questions, three researchers coded the same transcripts until an inter-rater agreement of 80% was reached. Thereafter, all transcripts were coded independently. Coding results were entered into text analysis software that sorts text from transcripts into sets of information, themes, and evidence relevant to the specific research questions (3). The results reflect a synthesis of the interviewees' responses.

Respondents described several strategies used to ensure necessary diagnostic and treatment services for women screened through the NBCCEDP. State-level strategies in all states included

1. computerized tracking and follow-up systems that used program surveillance data to identify and manage clients in need of diagnostic and treatment services; 2) provisions in contracts requiring screening providers to arrange for diagnostic follow-up and treatment before screening women; and 3) arrangements with provider groups and state professional associations for free or reduced-cost services for NBCCEDP clients. All states also had access to public or private funds to help support services not covered by the program; such revenue sources included state appropriations from general or tobacco tax revenues or funds from private foundations. These funds were available primarily for breast diagnostic services.

Local strategies tailored to the needs of individual clients were used to obtain diagnostic and treatment services. Common strategies reported by respondents included the following: providers billed public or private insurance plans; providers or local health departments helped clients apply for public assistance programs; providers referred clients to public hospitals; county indigent-care funds and hospital community-benefit programs financed services; clients received services through individually negotiated payment plans; and clients paid reduced or full fees for services.

Respondents strongly supported the continued growth of NBCCEDP and its goals but expressed several concerns. First, considerable time and effort were involved in developing and maintaining systems for diagnostic follow-up and treatment. Second, the process of identifying available resources within states for diagnostic and treatment services was considered labor-intensive. Third, the lack of coverage for diagnostic and treatment services negatively affected recruitment of providers and restricted the number of women screened. Fourth, respondents believed that an increasing number of physicians will not have the autonomy, because of changes in the health-care system, to offer free or reduced-fee services to NBCCEDP clients.

Respondents reported that arrangements for treatment were made for almost all NBCCEDP clients who received a diagnosis of breast cancer or invasive cervical cancer. Respondents stated that some women experienced time delays between screening, definitive diagnosis, and initiation of treatment. State program officials reported that, according to 1992-1996 surveillance data, small numbers of clients in whom cancer was diagnosed (i.e., from three to 13 women in each state) subsequently refused treatment. Because these clients were not interviewed, it could not be determined whether financial barriers contributed to their decisions to refuse treatment or their loss to follow-up.

Respondents were concerned that the NBCCEDP did not provide funding for all diagnostic procedures and treatment for the diseases for which clients were being screened; approaches for delivering services were fragmented; and the process of obtaining resources required substantial effort at the state, local, and provider levels. Respondents reported that the continuation of every strategy for diagnostic and treatment services beyond the next few years is uncertain.

Reported by: PM Lantz, PhD, Univ of Michigan School of Public Health, Ann Arbor. LE Sever, PhD, Battelle, Centers for Public Health Research and Evaluation, Seattle, Washington. Program Svcs Br, Office of the Director, Div of Cancer Prevention and Control, National Center for Chronic Disease Prevention and Health Promotion, CDC.

Editorial Note

Editorial Note: During July 1991-March 1997, the NBCCEDP provided 576,408 mammograms to women aged greater than or equal to 40 years, and 3409 cases of breast cancer were diagnosed. During this same period, the program provided 732,754 Pap tests; 23,782 cases of cervical intraepithelial neoplasia and 303 cases of invasive cervical cancer were diagnosed. These totals included women referred to the program for diagnostic evaluation of an abnormal screening result. The NBCCEDP internal estimates suggested that during this period only 12%-15% of uninsured women aged 40-64 years in the United States had been screened by the program (CDC, unpublished data, 1997).

Screening alone does not prevent cancer deaths; it must be coupled with timely and appropriate diagnostic and treatment services. The Congressional mandate for NBCCEDP requires grantees to take all appropriate measures to ensure provision of services required by women who have abnormal screening results. CDC provides funds for case management to help these women access health-care services. To increase the comprehensive nature of the program, CDC recently approved the use of NBCCEDP funds for breast biopsies.

The results of this study indicate that state health departments and their partners in the seven states had developed a wide range of strategies for diagnostic and treatment services in the absence of program resources. However, the time and effort required to arrange and maintain these services diverted resources away from screening activities.

This study was subject to at least two limitations. First, the results were based solely on the experience and opinions of informed professionals affiliated with the program and did not include the perspectives of NBCCEDP clients. Second, the results may not reflect the program experiences in other states. Case-study methods, however, are an appropriate and well-accepted approach to gaining in-depth understanding of complex programs in real-life situations (4). The validity of the findings was enhanced by developing standard instruments to guide the semi-structured interviews, protecting the confidentiality of respondents' remarks, using interview transcripts for data analysis rather than relying on interviewer notes, and obtaining feedback concerning state summary reports from respondents.

As more women are screened by the NBCCEDP, a greater burden will be placed on participating health agencies, providers, and other partners to obtain resources for breast and cervical cancer treatment. Case-management services will continue to be essential in helping underserved women overcome financial, logistical, and other barriers to receiving these services. Other long-term solutions to ensure that women in the program receive necessary treatment services are being pursued.

References

1. Henson RM, Wyatt SW, Lee NC. The National Breast and Cervical Cancer Early Detection Program: a comprehensive public health response to major health issues for women. J Public Health Management and Practice 1996;2:36-47.

2. Lantz PM, Macklem DJ, Hare M, Richardson LC, Sever LE, Orians CE. Follow-up and treatment issues in the National Breast and Cervical Cancer Early Detection Program: results from a multiple-site case study -- final report. Baltimore: Battelle, Centers for Public Health Research and Evaluation, 1997.

3. Miles MB, Huberman MA. Qualitative data analysis: an expanded sourcebook. 2nd ed. Thousand Oaks, California: Sage, 1994.

4. Yin RK. Case study research: design and methods. Sage: Newbury Park, 1989.

* Public Law 101-354.

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