Development of FamilyTalk: an Intervention to Support Communication and Educate Families About Colorectal Cancer Risk

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Development of FamilyTalk: an Intervention to Support Communication and Educate Families About Colorectal Cancer Risk Deborah J. Bowen 1 Gail Jarvik 8,9

&

Travis Hyams 2 & Mercy Laurino 3 & Timothy Woolley 4 & Stacey Cohen 5,6 & Kathleen A. Leppig 7 &

# American Association for Cancer Education 2019

Abstract IFamily members of individuals with colorectal cancer (CRC) may be at increased risk of developing the disease. However, the majority of CRC can be prevented through colonoscopy screening and family members may not be aware if they are recommended to pursue earlier screening because of their family history of CRC. As such, tools must be developed to effectively communicate potential changes to the recommended age for colonoscopy screening and other important CRC-related information to family members. We modified and adapted a successful intervention for families with melanoma to be appropriate for families with CRC to increase communication and screening in family members. The multistep process included the following: (1) developing a paper version of the intervention, (2) piloting the paper version among families with CRC, (3) developing the web-based version, and (4) testing the intervention for usability. Qualitative data was collected and analyzed for pilot testing. Usability testing utilized both qualitative and quantitative data. Patients with CRC liked the paper version and had multiple suggestions, including adding a better introduction, sections on genetics and family history, and clearer communication assistance. The web-based tool was well received and improved upon the linear book format with links, better section instructions, and more proactive communication tools for families. These processes produced materials that satisfied individuals from various families with assistance and support for communicating about CRC. Evaluating the effects of the tools in rigorous research projects is the next step. Keywords Colorectal cancer . Family . Communication

* Deborah J. Bowen [email protected] 1

Department of Bioethics and Humanities, University of Washington, Box 357120, Seattle, WA 98195, USA

2

Department of Behavioral and Community Health, School of Public Health, University of Maryland, College Park, MD, USA

3

Genetics and Cancer Prevention Programs, Seattle Cancer Care Alliance, Seattle, WA, USA

4

IEQ technologies, Inc, Springfield, OR, USA

5

Division of Oncology, University of Washington, Seattle, WA, USA

6

Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, WA, USA

7

Genetic Services, Kaiser Permanente of Washington, Seattle, WA, USA

8

Department of Medicine, Division of Medical Genetics, University of Washington, Seattle, WA, USA

9

Department of Genome Sciences, University of Washington, Seattle, WA, USA

Introduction Colorectal cancer (CRC) is a serious public health concern. In 2018, there will be an estimated 140,250 new CRC cases and 50,630 CRC deaths [1, 2]. CRC survivors are at risk for both CRC recurrence and a new primary cancer [3, 4] and their c