A new study shows that community-education and outreach initiatives can improve the stage at diagnosis in otherwise underserved patient populations. “This is exciting news,” lead investigator Sheryl Gabram, MD, from Emory University and director of the Avon Comprehensive Breast Center at the Georgia Cancer Center for Excellence at Grady, in Atlanta, told Medscape Oncology. “Our program works and we have been very successful.” The group’s new study was published online June 23 in Cancer.
An estimated 40,000 women in the United States are expected to die from breast cancer this year, and a disproportionate number of these are likely to be black women.
The excess mortality observed in black women has persisted for decades and has been attributed to a number of factors, including the higher number of women diagnosed at a later stage of disease and at a younger age, when breast cancers tend to be more aggressive and result in worse outcomes. Treatment differences have also been suggested; not all patients receive the recommended diagnostic, surgical, and systemic treatments.
Targeting At-Risk Populations
The result, Dr. Gabram told Medscape Oncology, is that black women have a 30% higher mortality rate. In a separate study published in the same issue of Cancer, Tim Byers, MD, from the Colorado School of Public Health, in Aurora, and his team showed that low-income patients have higher mortality rates — a problem the researchers attribute to the later disease stage at diagnosis and to less-aggressive treatment.
“Of the 3 cancers we examined,” write Dr. Byers and colleagues, “breast cancer was the 1 with the best evidence base for the benefits of early detection and treatment. Mammographic screening increases 5-year survival, as does adherence to consensus recommendations regarding adjuvant chemotherapy for regional disease and anti-estrogen therapy for cancers that test positive for estrogen receptor.”
To address discouraging mortality rates, Dr. Gabram and her team implemented community-education and outreach initiatives in their cancer center, at affiliated primary-care sites, and in the surrounding communities. They then assessed the effectiveness of these outreach initiatives and internal patient navigation on the stage of diagnosis at diagnosis.
What they found appears promising. A total of 487 largely minority patients, many under- or uninsured, were diagnosed and treated between 2001 and 2004. Since 2001, there were 1148 interventions by the team’s community health advocates, with an estimated program attendance of more than 10,000 participants.
During this period, the proportion of stage 0 (in situ) breast cancers diagnosed increased, from 12.4% (n = 14) to 25.8% (n = 33; P < .005), and proportion of stage 4 invasive breast cancer diagnoses decreased, from 16.8% (n = 19) to 9.4% (n = 12; P < .05).
To determine whether specific patients presented earlier as a result of the community-outreach initiatives, the researchers are pursuing prospective work to measure the effects of these interventions on potential stage migration. Similarly, they are collecting prospective data to determine whether patient navigators influenced treatment and appointment adherence and to determine the underlying reasons for barriers to specific interventions.
Groundbreaking Work
The innovative work is based on the ideas of the renowned Harold Freeman, MD, from the Ralph Lauren Center for Cancer Care and Prevention, in East Harlem, New York. Dr. Freeman has been quoted as saying that poverty is the principal cause of the high cancer death rate in his community and is a universal cause of low cancer survival.
Dr. Gabram’s program was created with the intention of furthering this model. The program is designed to raise breast cancer awareness, increase mammography screening rates, and encourage the use of prevention and treatment services. The program has 2 components — community health advocacy and internal patient navigation.
The community-educational programs are interactive presentations, held at churches, schools, workplaces, and health fairs, to encourage people to overcome any fears regarding cancer screening and diagnosis.
“Adherence to breast cancer screening often is impeded by personal or cultural misconceptions and barriers,” Dr. Gabram noted during an interview. “The primary role of the community health advocate is to increase the number of women who will consider and undergo screening by mammography.” The education is designed to empower the community with the knowledge to make better decisions concerning health.
Health advocates are largely volunteers (sometimes some receive a small stipend for their work). Many of the advocates are breast cancer survivors themselves who are a part of the communities they serve.
About 20 of the health advocates in Dr. Gabram’s program received additional training to become patient navigators. These advocates are paired with individual breast cancer patients to help guide and support them through the healthcare system.
A System of Volunteers
Patient navigators work with social services and case managers to help people access resources to overcome barriers to care. These include dealing with financial concerns, transportation problems, physical needs, communication difficulties, problems with disease management, and support services.
David Khan, MD, from Centinela Freeman Regional Oncology, in Inglewood, California, and his team showed that their patient-navigator program, also based on Dr. Freeman’s model, helped low-income patients overcome barriers to care.
The group, who presented their findings at the American Society for Therapeutic Radiology and Oncology (ASTRO) 49th Annual Meeting in November 2007, studied close to 300 cancer patients and demonstrated that the mean time to solving barriers to care improved from 42 days to just 1 day with the new program.
“Navigator programs work,” Dr. Khan told Medscape Oncology at the meeting. “They increase access to care and help physicians guide patients.”
Guillermo Rivera, a 63-year-old colorectal cancer patient at Centinela who attended the meeting and who had a patient navigator during the study, said he agreed. “This program really helps. It prevents people from getting lost in the shuffle. It helped me a lot.”
Patient navigator Lillian Morton-Benbow is an esophagus and throat cancer survivor and has lost more than 1 relative to cancer. She did not have a navigator when she was going through the worst of her cancer and she said it was a struggle.
Inspired by Rick Warren’s book The Purpose-Driven Life, she entered the patient-navigator training program; she said it has been a life-altering experience for both her and the people she helps. Ms. Morton-Benbow said navigators strive to lift some of the many burdens from patients. “I strongly believe that all cancer patients can benefit from having a navigator.”
Dispelling Myths and Fears
Dr. Gabram said she has been encouraged by what she is seeing. “We’ve been hearing many positive reports from people.” She points out that the current study was limited by its cross-sectional design. “The results did not allow us to establish a causal relation between community-education and outreach initiatives and the effect on stage migration.”
Dr. Gabram hopes new studies will continue to shed light on this issue. Her group believes that providing culturally relevant education and improved support systems that include outreach and navigation will influence a patient’s decision to accept appropriate prevention, screening, diagnostic studies, and treatment regimens for cancer care.
“It’s not true that mammograms spread cancer or that surgery can be harmful by exposing cancer to open air,” Dr. Gabram said. “There are a lot of myths out there and we need to meet people where they are so that we can help.”
The community health advocate and internal navigation programs are supported by an Avon Foundation Grant.
Cancer. Published online before print June 23, 2008.
Reviewed by Ramaz Mitaishvili, MD
