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Open Access Study protocol

Using a state cancer registry to recruit young breast cancer survivors and high-risk relatives: protocol of a randomized trial testing the efficacy of a targeted versus a tailored intervention to increase breast cancer screening

Maria C Katapodi1*, Laurel L Northouse1, Ann M Schafenacker1, Debra Duquette2, Sonia A Duffy3, David L Ronis4, Beth Anderson2, Nancy K Janz5, Jennifer McLosky2, Kara J Milliron6, Sofia D Merajver7, Linh M Duong8 and Glenn Copeland9

Author Affiliations

1 University of Michigan School of Nursing, 400 N. Ingalls Building, Room 2158, Ann Arbor, MI, 48109, USA

2 Michigan Department of Community Health, Cancer Genomics Program, Lansing, USA

3 University of Michigan School of Nursing and VA Hospital, Ann Arbor, USA

4 University of Michigan School of Nursing and VA Center for Clinical Management Research, Ann Arbor, USA

5 University of Michigan School of Public Health, Ann Arbor, USA

6 University of Michigan Comprehensive Cancer Center, Ann Arbor, USA

7 University of Michigan School of Medicine and Comprehensive Cancer Center, Ann Arbor, USA

8 Cancer Surveillance Branch, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention, Atlanta, USA

9 Michigan Cancer Surveillance Program, Lansing, USA

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BMC Cancer 2013, 13:97  doi:10.1186/1471-2407-13-97

Published: 1 March 2013

Abstract

Background

The Michigan Prevention Research Center, the University of Michigan Schools of Nursing, Public Health, and Medicine, and the Michigan Department of Community Health propose a multidisciplinary academic-clinical practice three-year project to increase breast cancer screening among young breast cancer survivors and their cancer-free female relatives at greatest risk for breast cancer.

Methods/design

The study has three specific aims: 1) Identify and survey 3,000 young breast cancer survivors (diagnosed at 20–45 years old) regarding their breast cancer screening utilization. 2) Identify and survey survivors’ high-risk relatives regarding their breast cancer screening utilization. 3) Test two versions (Targeted vs. Enhanced Tailored) of an intervention to increase breast cancer screening among survivors and relatives. Following approval by human subjects review boards, 3,000 young breast cancer survivors will be identified through the Michigan Cancer Registry and mailed an invitation letter and a baseline survey. The baseline survey will obtain information on the survivors’: a) current breast cancer screening status and use of genetic counseling; b) perceived barriers and facilitators to screening; c) family health history. Based on the family history information provided by survivors, we will identify up to two high-risk relatives per survivor. Young breast cancer survivors will be mailed consent forms and baseline surveys to distribute to their selected high-risk relatives. Relatives’ baseline survey will obtain information on their: a) current breast cancer screening status and use of genetic counseling; and b) perceived barriers and facilitators to screening. Young breast cancer survivors and high-risk relatives will be randomized as a family unit to receive two versions of an intervention aiming to increase breast cancer screening and use of cancer genetic services. A follow-up survey will be mailed 9 months after the intervention to survivors and high-risk relatives to evaluate the efficacy of each intervention version on: a) use of breast cancer screening and genetic counseling; b) perceived barriers and facilitators to screening; c) self-efficacy in utilizing cancer genetic and screening services; d) family support related to screening; e) knowledge of breast cancer genetics; and f) satisfaction with the intervention.

Discussion

The study will enhance efforts of the state of Michigan surrounding cancer prevention, control, and public health genomics.

Trial registration

NCT01612338

Keywords:
Breast cancer screening; Familial breast cancer; Young breast cancer survivors; High-risk relatives; Randomized trial; Targeted and enhanced tailored intervention; Screening mammography; Genetic testing; Cancer registry; State-wide community-based sample