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Psychosocial Study of Breast Cancer Survivorship and Genetic Testing

Grant: POP 2000 704
2001-2003

SUMMARY

This study sought to identify key psychosocial variables that influence effective communication of breast cancer risk information and genetic screening among Hispanic families. Investigators surveyed 150 Hispanics on breast cancer screening and cancer survivorship (i.e., stress and coping strategies, quality of life, religion/spirituality, functional capacity). The study also examined critical knowledge, attitudes and behaviors that support informed decision-making for breast cancer genetic screening.

PRINCIPAL INVESTIGATOR

  • Amelie G. Ramirez, DrPH
    IHPR, The University of Texas Health Science Center at San Antonio (at Baylor College of Medicine for this project)

CO-PRINCIPAL INVESTIGATOR

  • Alexander Miller, MD
    Director of Surgical Oncology and Director of the Cancer Prevention and Risk Assessment Clinic, Texas Cancer Clinic (at the Cancer Therapy & Research Center for this project)

COLLABORATORS

  • Sharon Wilks, MD
  • American Cancer Society
  • Susan G. Komen for the Cure, San Antonio affiliate
  • Alamo Breast Cancer Foundation
  • Carmen Boudreau, LSW, Support Group Facilitator, University Hospital Downtown, San Antonio

LOCATION/SERVICE AREA

San Antonio, Texas, and surrounding area

CONCLUSIONS

Data from the survey helped develop educational materials and communication methods and programs and served as baseline data for new research. The survey found that low-income participants were more likely to experience depression than higher-income participants. They also had a lower quality of life, with poorer social well-being and lower functionality. About 85 percent of those surveyed knew little or nothing about genetic testing, and 75 percent were interested in finding out more information. The most important perceived benefits of such testing were to take better care of selves, get screened more often, and learn about their children’s risk. The commonly perceived worries were about affect on insurance and concern over own emotional reaction. In terms of what Hispanic women think prevents them from complying with medical recommendations and access to timely care, they identified these:

Reason for non-compliance (% responding affirmatively) Parents Family
Can’t understand physician 81% 77%
Can’t understand English 64% 62%
Don’t believe medical recommendations 68% 63%
Don’t have time/time off work 75% 58%
Care is too expensive 75% 80%
Patients afraid of recommendations 91% 91%
Prior bad experience with a physician 79% 78%
Participate in alternative medical care 64% 56%

PUBLICATIONS

  • Wildes, K, Miller, A, San Miguel de Majors, S, & Ramirez, A. In review. The Religiosity/Spirituality of Latina Breast Cancer Survivors and Impact on Health-Related Quality of Life. Journal of Psycho-Oncology.

ABSTRACTS

  • Ramirez AG, Aparicio-Ting FE, Miller AR, San Miguel de Majors SL, Gonzalez M, and Pollock BH. Interest in genetic testing among Hispanic family members of breast cancer patients and survivors. 28th Annual Meeting of the American Society for Preventive Oncology, Bethesda, Md., March 14-16, 2004.
  • Ramirez AG, Aparicio-Ting FE, Miller AR, San Miguel de Majors SL, Gonzalez M, and Pollock BH. Psychosocial adjustment of Hispanic families affected by breast cancer.   26th Annual San Antonio Breast Cancer Symposium, San Antonio, Texas. Dec. 3-6, 2003.
  • Ramirez AG, Miller AR, Aparicio-Ting FE, San Miguel de Majors SL, Gonzalez M, and Pollock BH. Knowledge, attitudes, and interest in genetic testing among Hispanic family members of breast cancer patients and survivors. Abstract: 131st Annual American Public Health Association Meeting, San Francisco.  Nov. 15-19, 2003.
  • Ramirez AG, Miller AR, Aparicio-Ting FE, San Miguel de Majors SL, Gonzalez M, and Pollock BH. Hispanic families of breast cancer patients and survivors: A psycho-social assessment. 1st Annual Cancer Center Retreat & Symposium, Houston. Nov. 7, 2003.
  • Miller AR, Ramirez AG, Aparcio-Ting FE, San Miguel de Majors SL, and Pollock BH.  Identified barriers to breast cancer care among Hispanic women.  American College of Surgeons 89th Annual Clinical Congress, Chicago. Oct. 19-23, 2003.
  • Ramirez AG, Miller AR, Aparicio-Ting FE, San Miguel-Majors SL, Gonzalez M, and Pollock BH. Psychosocial needs of Hispanic families of breast cancer patients and survivors.  American Academy of Health Behavior Annual Meeting, Augustine, Fla. March 18, 2003.
  • Ramirez, AG, Miller, A, San Miguel, S, Aparicio-Ting, F, Gonzalez, M, and Pascua C. A pilot study comparing the psychosocial needs of Hispanic families of breast cancer patients and survivors. San Antonio Breast Cancer Symposium, San Antonio, Texas. Dec. 13, 2002.
  • Ramirez AG, Miller A, Gonzalez M, San Miguel SL, Aparicio-Ting FE, and Pascua C. Knowledge, attitudes, and interest in genetic testing among Hispanic family members of breast cancer patients and survivors (pilot). Frontiers in Cancer Prevention Research. American Association of Cancer Research (AACR), Boston. Nov. 15, 2002.
  • Ramirez AG, Miller A, Gonzalez M, San Miguel SL, Aparicio-Ting FE, and Pascua C. Psychosocial needs of Hispanic families with breast cancer (pilot). 12th Annual Symposium on Cancer Research in San Antonio, San Antonio, Texas. July 12, 2002.