Latinas and DCIS: Treatment Decisions and Quality of Life

Institution: University of California, San Francisco
Investigator(s): Celia Kaplan, Dr.P.H. -
Award Cycle: 2003 (Cycle IX) Grant #: 9PB-0157 Award: $774,174
Award Type: Request for Applications
Research Priorities
Community Impact of Breast Cancer>Sociocultural, Behavioral, and Psychological Issues: the human side

Initial Award Abstract (2003)
Gathering information via telephone survey, we will compare treatment decision-making processes, QOL issues and the receipt of follow-up care among 300 Latinas and 300 white women diagnosed with DCIS. Participants will be identified through the California Cancer Registry which collects information on all individuals diagnosed with cancer within the state of California. To insure comparability, Latina and white participants will be matched by age and zipcode. The first year of the study will be dedicated to the development and refinement of the telephone survey. Data will be collected by bilingual/bicultural interviewers. Our team is composed of Latino and non-Latino researchers who have conducted numerous studies among the Latino populations in the state. We will be assisted in our efforts by a community organization dedicated to helping Latinas with cancer.

This study explores a topic that has not received sufficient research attention: Latina and white women with DCIS. In addition, it implements a methodology that would allow us to reach women with different demographic characteristics, in rural or urban locations, and with different access to care. Although an extensive literature base exists examining the issues affecting non-Latina white women with invasive breast cancer, little is known about treatment decision-making, QOL and follow-up care among women with DCIS, particularly Latina women. Some parallels may be drawn between invasive cancer patients and DCIS patients, who share many of the consequences of diagnosis and treatment. However, women with DCIS have a unique disease profile, since their prognosis is often very good, and many of the discovered lesions would not have resulted in invasive cancer if left untreated, yet many patients will undergo invasive treatment of unknown benefit. This study therefore fills a research gap by specifically examining the experiences of women with DCIS, including Latinas from diverse regions of the state.

Final Report (2008)
One result of the widespread adoption of screening mammography in the past three decades has been an increase in the rates of breast ductal carcinoma in situ (DCIS), a non-invasive form of breast cancer, among women of all ages. As screening levels increase in the growing U.S. Latino population, DCIS rates among Latina women are likely to continue to rise. For all women diagnosed with DCIS, the issues of treatment decision-making, health-related quality of life (QOL), and follow-up care are poorly understood. Thus attention to these issues among Latinas is especially urgent as they face unique cultural and access barriers to health care. Therefore, this study assessed and compared the treatment decision-making processes, QOL, and follow-up care of Latinas and non-Latina whites (hereafter called white) with the overarching goal of ameliorating the impact of DCIS on women. Specifically, we 1) identified, via the California Cancer Registry (CCR), English- and Spanish-speaking Latina and white women diagnosed with DCIS; 2) conducted qualitative research to develop and pre-test a culturally appropriate telephone survey instrument to assess treatment selection, decision-making, QOL, and the receipt of follow-up care in Latina and white women with DCIS; 3) conducted a telephone interview with Latina and white women with DCIS using the instrument developed; and 4) compared the treatment selection, decision-making, QOL, and follow-up care of Latina and white women with DCIS.

Research efforts in year (04) have included the analysis of qualitative data, the completion of survey data and data entry. Recruitment ended in November 2006 for a total of 396 whites, 156 English-speaking Latinas, and 193 Spanish-speaking Latinas. The mean age of all participants at time of interview was 57 years, and at diagnosis, 54 years. The majority of participants were from central California (38%). More than half participants (59%) had a college education or higher, and the majority (66%) were born in the United States.

The vast majority of the respondents (67%) chose breast conserving surgery (BCS). Seven participants reported no surgical procedure. Among those who had a BCS, 22% reported no radiation therapy. English-speaking Latinas (87%) and Spanish-speaking Latinas (82%) were more likely to receive radiation than white women (72%). Among those who had a mastectomy, 38% did not have reconstruction. Spanish-speaking Latinas were less likely to have reconstruction than the other two groups (40% compared to 72% among white women and 69% among English-speaking Latinas).

Findings from this study will facilitate the development of interventions to ameliorate the impact of DCIS on women through culturally sensitive approaches to treatment decisions and follow-up care.

Symposium Abstract (2005)
Lacking clear evidence-based clinical guidelines on the treatment of ductal carcinoma in situ (DCIS), consideration of patient preferences and informed decision making are especially critical. Yet treatment decision-making processes among women with DCI are poorly understood, especially among Latina women. Using qualitative data, this study will compare the knowledge and understanding of diagnosis, decision-making processes, and satisfaction with care of Latinas and non-Latina whites with DCIS.

To aid in the development of a structured questionnaire, semi-structured interviews were conducted among women with DCIS identified through the California Cancer Registry (CCR) Regions 1 & 8 (San Francisco Bay Area). Participants were asked about their knowledge and understanding of DCIS, treatment decision making, satisfaction with decision making and care, and cultural factors that may have influenced their DCIS experience.

Inclusion criteria were: diagnosed with DCIS between 2000-2002, self-identified as Latina or non-Latina White, English- or Spanish-speaking, and 18 years of age or older. Interviews were audio recorded, transcribed, translated if necessary, and content analyzed using qualitative data analysis software. Interviews were completed with 34 women (16 Latinas and 18 non-Latina Whites). Over half were age 60 or older (mean= 60.5; SD=11.0), 36.6% had a high school diploma or less, with non-Latina Whites more likely than Latinas to report a college education or higher (50.0% vs. 14.3%, p<.05). The majority of women (71.9%) were married.

Analysis of the coded interviews will be examined to determine differences in treatment and decision making experiences between Latinas and non-Latina Whites. Consideration of ethnic differences in knowledge and understanding of diagnosis, decision making process, and satisfaction with this decision and the care received, is necessary for the provision of culturally sensitive care for women with DCIS. Our findings should provide directions for future research and/or interventions to improve informed decision-making. Similarly, results from the larger telephone survey should inform interventions aimed at ameliorating the impact of DCIS among all women.

Information exchange and decision making in the treatment of Latina and white women with ductal carcinoma in situ.
Periodical:Journal of Psycosocial Oncology
Index Medicus: J Psychosoc Oncol.
Authors: Nápoles-Springer AM, Livaudais JC, Bloom J, Hwang S, Kaplan CP
Yr: 2007 Vol: 25 Nbr: 4 Abs: Pg:19-36