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Reproductive Health Choices for Young Adults With Sickle Cell Disease or Trait: Randomized Controlled Trial Immediate Posttest Effects

Wilkie, Diana J.; Gallo, Agatha M.; Yao, Yingwei; Molokie, Robert E.; Stahl, Christine; Hershberger, Patricia E.; Zhao, Zhongsheng; Suarez, Marie L.; Labotka, Robert J.; Johnson, Bonnye; Angulo, Rigo; Angulo, Veronica; Carrasco, Jesus; Shuey, David; Pelligra, Stephanie; Wang, Edward; Rogers, Dennie T.; Thompson, Alexis A.

doi: 10.1097/NNR.0b013e3182a0316b
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Background: People with sickle cell disease (SCD) or sickle cell trait (SCT) may not have information about genetic inheritance needed for making informed reproductive health decisions. CHOICES is a Web-based, multimedia educational intervention that provides information about reproductive options and consequences to help those with SCD or SCT identify and implement an informed parenting plan. Efficacy of CHOICES compared with usual care must be evaluated.

Objective: The purpose was to compare immediate posttest effects of CHOICES versus an attention-control usual care intervention (e-Book) on SCD-/SCT-related reproductive health knowledge, intention, and behavior.

Methods: In a randomized controlled study, we recruited subjects with SCD/SCT from clinics, community settings, and online networks with data collected at sites convenient to the 234 subjects with SCD (n = 136) or SCT (n = 98). Their ages ranged from 18 to 35 years; 65% were women, and 94% were African American. Subjects completed a measure of sickle cell reproductive knowledge, intention, and behavior before and immediately after the intervention.

Results: Compared with the e-Book group, the CHOICES group had significantly higher average knowledge scores and probability of reporting a parenting plan to avoid SCD or SCD and SCT when pretest scores were controlled. Effects on intention and planned behavior were not significant. The CHOICES group showed significant change in their intention and planned behavior, whereas the e-Book group did not show significant change in their intention, but their planned behavior differed significantly.

Discussion: Initial efficacy findings are encouraging but warrant planned booster sessions and outcome follow-ups to determine sustained intervention efficacy on reproductive health knowledge, intention, and actual behavior of persons with SCD/SCT.

Diana J. Wilkie, PhD, RN, FAAN, is Professor, Harriett H. Werley Endowed Chair for Nursing Research, and Director of the Center of Excellence for End-of-Life Transition Research, University of Illinois at Chicago.

Agatha M. Gallo, PhD, RN, FAAN, is Professor Emerita; and Yingwei Yao, PhD, is Research Associate Professor, University of Illinois at Chicago.

Robert E. Molokie, MD, is Assistant Professor, University of Illinois at Chicago, and Attending Physician, Jesse Brown Veterans Administration Medical Center, Chicago, Illinois.

Christine Stahl, MD, is Assistant Professor; Patricia E. Hershberger, PhD, RN, is Assistant Professor; Zhongsheng Zhao, PhD, is Research Assistant Professor; Marie L. Suarez, PhD, is Senior Research Specialist; Robert J. Labotka, MD, is Professor Emeritus; Bonnye Johnson, MS, RN, is Community Coordinator; Rigo Angulo, BS, is Research Specialist; Veronica Angulo, BS, is Research Specialist; Jesus Carrasco, BS, is Research Specialist; and David Shuey, BA, is Research Specialist, University of Illinois at Chicago.

Stephanie Pelligra, MPH, is Sickle Cell Program Coordinator, Ann and Robert H. Lurie Children’s Hospital of Chicago, Illinois.

Edward Wang, PhD, is Research Assistant Professor, University of Illinois at Chicago.

Dennie T. Rogers, MD, is Assistant Professor, Rockford Health System, Illinois.

Alexis A. Thompson, MD, is Professor, Northwestern University-Feinberg School of Medicine, Chicago, IL, and Hematology Section Head, Ann and Robert H. Lurie Children’s Hospital of Chicago, Illinois.

Accepted for publication May 31, 2013.

The authors acknowledge Kevin Grandfield, Publication Manager for the UIC Department of Biobehavioral Health Science, for editorial assistance. A special thanks to the Lay Advisory Board members who guided the development of the CHOICES intervention and all the study participants.

The research and this publication were made possible by Grant Numbers U54 HL090513 and R01 HL114404 from the National Institutes of Health, National Heart, Lung, and Blood Institute. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the National Heart, Lung, and Blood Institute. The final peer-reviewed manuscript is subject to the National Institutes of Health Public Access Policy.

The authors have no conflicts of interest to disclose.

Corresponding author: Diana J. Wilkie, PhD, RN, FAAN, University of Illinois at Chicago, 845 S. Damen Avenue, Room 660 (MC 802), Chicago, IL 60612-7352 (e-mail: diwilkie@uic.edu).

© 2013 Wolters Kluwer Health | Lippincott Williams & Wilkins.