Project Title: Psychosocial Study of Breast Cancer Survivorship and Genetic Testing Among Hispanic Breast Cancer Registry Members

Abstract:

The purpose of this study is to identify key psychosocial variables that influence effective communication of breast cancer risk information and genetic screening among members of Hispanic families with hereditary breast cancer. One hundred and fifty (n=150) Hispanic participants were surveyed on an array of subjects relating to 1) breast cancer screening and 2) cancer survivorship (e.g., stress and coping strategies, quality of life, religion/spirituality, functional capacity, social support and self-efficacy). The study will also examine critical knowledge, attitudes and behaviors that support information decision-making for breast cancer genetic screening. Respondents are 1) Hispanic women who are breast cancer survivors and 2) extended family members of those women with breast cancer. Data from the survey will be published, used to develop education materials and programs and also used as baseline data for new research.

PI:

  • Amelie G. Ramirez, DrPH, Professor of Medicine and Deputy Director of the Chronic Disease Prevention and Control Research Center at Baylor College of Medicine

Funding Institution:

Susan G. Komen Breast Cancer Foundation (National)

Funding Period:

2 yrs. - 2001-2003

Location/Service Area:

San Antonio, TX and surrounding area

Collaborators/Co-sponsors:

  • Alex R. Miller, MD
  • Sharon Wilks, MD
  • Brad Pollock, PhD
  • American Cancer Society
  • San Antonio Affiliate, Susan G. Komen Breast Cancer Foundation
  • San Antonio Cancer Institute
  • Alamo Breast Cancer Foundation
  • Carmen Boudreau, LSW, Support Group Facilitator, University Hospital Downtown, San Antonio, Texas

Goals:

To identify key psychosocial variables that influence effective communication of breast cancer risk information and genetic screening among members of Hispanic families with hereditary breast cancer.

Results:

Of the total 67 breast cancer survivors and 83 family members interviewed in the final study sample, most family members state they did not suffer from depression or distress related to their loved one’s diagnosis. However, participants with an income under $25,000 were more likely to experience decreased psychosocial adjustment (e.g., depression) than higher income participants. They also had a lower quality of life, with poorer social well-being and lower functionality. Individuals reported high religiosity levels, participating in religious practices and beliefs and deriving support from their religious community. Immigrant participants were more religious and more likely to derive religious community support.

The 83 family members interviewed had read or heard relatively little to almost nothing about genetic testing (86%), and 75% were interested in obtaining more information. Regardless, the majority perceived themselves as candidates for testing and were interested in having a genetic test. Participants less than age 40 were the most likely to be interested. Although females had a higher perceived risk of carrying an altered gene, males were as interested in having a genetic test as females. Participants were also more likely to be interested in insurance-paid tests (75%), than self-paid tests (29%). The most important perceived benefits were to take better care of one's self (75%), get screened more often (72%), and learn about their children's risk (63%). The most common perceived risks were worry about affect on insurance (16%) and concern over own emotional reaction (15%). Participants identified more with the benefits than risks.

A total of 117 breast cancer patients and 78 family members answered the Patient Satisfaction scale of this study to learn what barriers Hispanic women believe to be responsible for preventing compliance with medical recommendations and access to timely and appropriate health care. Seventy percent of all participants described their education as high school level or less, and 66% reported their annual household income as $50,000 or less. Approximately 25-30% of respondents indicated they speak or think preferentially in Spanish. While 96% of respondents indicated they were part of a funded health care plan, approximately 41% received health care based on a county-supported health assistance program for indigent patients.

Respondents provided the following reasons why they believe patients do not follow medical recommendations. Responses of patients closely resembled those of family members with the exception that a greater proportion of patients believed that not having time or being able to leave work was a reason preventing compliance with medical care (see below):

% Responding Affirmatively
Reason for non-compliance Points Family p value
Cannot understand physician 81% 77% NS
Cannot understand English 64% 62% NS
Do not believe medical recommendations 68% 63% NS
Do not have time/no time off work 75% 58% .02
Care is too expensive 75% 80% NS
Patients afraid of recommendations 91% 91% NS
Previous bad experience with a physician 79% 78% NS
Participate in alternative medical care 64% 56% NS

These data demonstrate the significant barriers to breast cancer care that Hispanic women identify in an urban academic medical setting, and they provide multiple sources of direction for improving outcomes associated with breast cancer care in this patient population.

Potential Impact:

The study will likely give insight into the precise methods of communication and the potential impediments to educational communication aimed at cancer health issues with respect to Hispanic populations.

Publications:

Poster Presentations

  • 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. December 3-6, 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, Texas. November 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, Illinois. October 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, Florida. 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. December 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, Massachusetts. November 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.

Abstracts Accepted

  • 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, California. November 15-19, 2003.

Abstracts Submitted

  • 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, Maryland. March 14-16, 2004.