M. D. Anderson expands peer counseling program for African-American breast cancer survivors

Study seeks to improve quality of life after cancer

With the Sisters Peer Counseling in Reproductive Health after Treatment (SPIRIT) program – carried out in partnership with Sisters Network® Inc., one of the nation's largest African-American women's breast cancer advocacy organizations – M. D. Anderson is among the first to explore ethnic influences on reproductive health after breast cancer and to design an intervention program specifically geared toward this population.

More than nine hundred survivors from Sisters Network® Inc. chapters nationwide will be enrolled to participate in the four-year SPIRIT project, which provides free peer counseling to address concerns many women feel following treatment, including coping with menopausal symptoms, sexuality, infertility, and breast cancer risk among family members. In preparation, 30 peer counselors and seven regional coordinators – all breast cancer survivors themselves – will be trained in an intense 40-hour workshop.

Early conclusions from a recent pilot study support the belief that peer counseling is an effective way to empower African-American breast cancer survivors, as they are more likely to discuss sexual health issues with trusted family members or friends, one-on-one, rather than in a group or with their physicians.

"Although research shows that minority women may have more problems after cancer treatment with menopausal symptoms, sexuality and infertility, they are less likely to seek medical help," says Leslie R. Schover, Ph.D., principal investigator for the study and associate professor of behavioral science at M. D. Anderson. "This pattern of behavior is largely caused by cultural and socio-economic factors in the African-American community, which contribute to more conservative attitudes about sexuality, wariness about trusting health care professionals in this very personal area, and barriers accessing good health care."

There is very little information about African-American survivorship and sexuality, which the study aims to address. And according to Karen Jackson, founder and national president of Sisters Network® Inc., an organization with 35 affiliate chapters in cities throughout the nation, with the volume of calls already coming in, enrollment for the program will not be a problem.

"The enthusiasm and high level of involvement of the women in this study breaks down the prevailing perception that African-American women are unavailable or unwilling to participate in clinical trials – a falsehood that could have negative effects on important future research initiatives," says Jackson, who selects potential peer counselors for the program. "We are committed to increasing local and national attention to the devastating impact of breast cancer on the African-American community, and we are extremely pleased to continue this valuable partnership with M. D. Anderson as we search for greater understanding and answers."

SPIRIT participants must be African-American breast cancer survivors who are not on active treatment other than hormonal medications, and were diagnosed at least a year prior to participating in the study. Half of the women will attend three sessions with a trained peer counselor, who is also an African-American breast cancer survivor. The other participants will receive the SPIRIT workbook with health information and the option to talk with their counselor by phone for up to half an hour. The study will find out whether more personal contact with the counselor adds significantly to the positive results of the program. The sessions focus on 1) reducing hot flashes and increasing postmenopausal health through relaxation, stress management and healthy habits, 2) enhancing sexual communication and desire, 3) coping with infertility or concerns about healthy pregnancy after breast cancer, and 4) understanding genetic cancer risk issues for family members.

The year-long SPIRIT pilot project, which began in January 2002, enrolled 48 African-American breast cancer survivors in Houston to take part in the free, 3-session peer counseling program. Preliminary findings, which were presented at the 2003 Sisters Network Annual Meeting in April, indicated that the program was successful in improving women's knowledge and decreasing their sexual and menopause symptoms, as well as improving their overall distress levels.

Breast cancer is one of the most common cancers in women, second only to lung cancer. According to the American Cancer Society, there will be an estimated 211,300 new cases of breast cancer in the United States in 2003, and about 39,800 women are expected to die of the disease. Of these, an estimated 20,000 African-American women are expected to be diagnosed with breast cancer, and about 5,700 are expected to die of the disease.

Additionally, African-American women have not benefited as much as women of other ethnicities from advances in breast cancer treatment and are more likely than Caucasian women to be diagnosed before menopause, Schover says.

The study is funded through a $1.9 million grant from the National Cancer Institute. For more information, or to participate in the SPIRIT project, call 713-745-5771.