Cancer Patient and Survivor Research From the Cancer Information Service Research Consortium: A Preview of Three Large Randomized Trials and Initial Lessons Learned

Abstract

The authors describe 3 large randomized trials from the Cancer Information Service Research Consortium. Three web-based multimedia programs are being tested to help newly diagnosed prostate (Project 1) and breast cancer patients (Project 2) make informed treatment decisions and breast cancer patients prepare for life after treatment (Project 3). Project 3 also tests a telephone callback intervention delivered by a cancer information specialist. All participants receive standard print material specific to each project. Preliminary results from the 2-month follow-up interviews are reported for the initial wave of enrolled participants, most of whom were recruited from the Cancer Information Service (1-800-4-CANCER) telephone information program (Project 1: n =208; Project 2: n =340; Project 3: n =792). Self-reported use of the multimedia program was 51%, 52%, and 67% for Projects 1, 2, and 3, respectively. Self-reported use of the print materials (read all, most, or some) was 90%, 85%, and 83% for Projects 1, 2, and 3, respectively. The callback intervention was completed by 92% of Project 3 participants. Among those using the Cancer Information Service Research Consortium interventions, perceived usefulness and benefit was high, and more than 90% reported that they would recommend them to other cancer patients. The authors present 5 initial lessons learned that may help inform future cancer communications research.

Acknowledgments

The authors acknowledge the other members of the CISRC research team: Kuang-Yi Wen (Fox Chase Cancer Center, Philadelphia, Pennsylvania, USA), Ellen Berman (Lockheed Martin, Health Applications, Rockville, Maryland, USA), Meg Rebull (University of Colorado Cancer Center, Denver, Colorado, USA), Jeff Consoer (Department of Anesthesiology, School of Medicine, University of Colorado, Denver, Colorado, USA), Kathleen Garrett (University of Colorado Cancer Center, Denver, Colorado, USA), Alexandra Jorge (Departments of Psychology & Psychiatry/Biobehavioral Sciences, Jonsson Comprehensive Cancer Center, University of California Los Angeles, Los Angeles, California, USA), Nihal Mohamed (Mount Sinai School of Medicine, New York, New York, USA), Mary E. Ropka (Fox Chase Cancer Center, Philadelphia, Pennsylvania, USA, and School of Medicine, University of Virginia, Charlottesville, Virginia, USA), Nancy S. Zbaren (National Cancer Institute Cancer Information Service Contact Center, Fred Hutchinson Cancer Research Center, Seattle, Washington, USA), and Julie Kornfeld (Department of Epidemiology and Public Health, University of Miami Miller School of Medicine, Miami, Florida, USA).

This research was supported by grant 5P01CA057586 from the National Cancer Institute (NCI) of the National Institutes of Health. The accuracy of the information and the interpretations and conclusions reported herein are the sole responsibility of the authors and not the NCI. The design, development, and production of the CISRC multimedia programs was performed by the NCI-funded Behavioral Core Facility of the Fox Chase Cancer Center (P30CA06927). Programming of the baseline interviews and distribution of all CISRC intervention materials was performed by Lockheed Martin, Rockville, Maryland. The telephone follow-up interviews were conducted by the NCI-funded Survey Research Shared Resource of the University of Colorado Cancer Center.

We gratefully acknowledge and salute the cancer patients and survivors who voluntarily gave of their time and effort to make this research possible. We also gratefully acknowledge the cancer information specialists and management staff at the three participating CIS call centers who were indispensible collaborators in this research, as well as the counselors of the Cancer Information and Counseling Line, University of Colorado at Denver, who assisted in delivering the Project 3 callback intervention. Finally, special thanks are extended to those who collaborated in patient recruitment to the three CISRC studies, including the American Cancer Society and Love/Avon Army of Women.

Notes

Note. Participants responded to the question, “How much of the print material was read?”.

¹Denominator = Group 3 participants (n = 262) who reported receiving callback intervention (n = 236 or 90%).

²Denominator = Group 3 participants who reported discussing breast cancer questions/concerns (n = 156).

³Denominator = Group 3 participants who recommended continuing callback as service program (n = 143).