Our long-term goal is to foster informed reproductive health decisions by young adults with sickle cell disease (SCD) or sickle cell trait (SCT). Unfortunately for many young adults with SCD and SCT pregnancies occur without the opportunity to make well-informed reproductive health decisions, which is related to insufficient or incorrect knowledge of one's or the partner's SCD/SCT status or its genetic transmission. We will determine the long-term 12-, 18- and 24-mo effects on reproductive knowledge and reproductive health behaviors in a two-group design with CHOICES or usual care attention control [eBook] interventions. In this mixed-method application we will complete the efficacy trial, add a new qualitative aim at 24 mos to understand how study participation influenced participants'reproductive behaviors, and with a National Advisory Board (NAB), plan and pilot test the feasibility of a multi-site web-based study in 4 states (CA, TX, NC, CT).
Specific aims are to:
Aim 1. In 236 young adults (18 to 35 yr) with SCD or SCT, compare usual care and CHOICES boosted (at 12 mos) groups for sustained effects on reproductive health knowledge and reproductive health behaviors (at 12, 18, &24 mo). At all time points, we hypothesize that knowledge scores and behaviors consistent with the parenting plan will be greater in the CHOICES group than the usual care group.
Aim 2. From interviews with 60 of these participants, explore their views about and experience with the aim1 study participation and what influenced their reproductive health behaviors during the study. We will identify conditions under which participants did or did not change their reproductive health behaviors as participants in the control or CHOICES groups, which will be important for interpretation of outcomes and if indicated by qualitative findings to modify the intervention(s).
Aim 3. In 100 newly recruited young adults (18 to 35 yr) with SCD or SCT, determine the feasibility of replicating the CHOICES trial as a 24-mo multi-site, community-based study with Internet- and web-based recruitment, delivery, and retention strategies. The recruitment and retention rates and NAB consultation will guide design of procedures for a multi-site national effectiveness study of the CHOICES intervention.

Public Health Relevance

Tested in this study is the CHOICES intervention, which was developed with extensive input from the sickle cell community. CHOICES is a new web-based, tailored, multimedia education program about sickle cell disease, reproductive options and consequences that is designed to help young men and women with sickle cell disease or sickle cell trait to implement a parenting plan in advance of pregnancy.

Agency
National Institute of Health (NIH)
Institute
National Heart, Lung, and Blood Institute (NHLBI)
Type
Research Project (R01)
Project #
5R01HL114404-03
Application #
8608593
Study Section
Behavioral Medicine, Interventions and Outcomes Study Section (BMIO)
Program Officer
Werner, Ellen
Project Start
2012-02-15
Project End
2015-01-31
Budget Start
2014-02-01
Budget End
2015-01-31
Support Year
3
Fiscal Year
2014
Total Cost
Indirect Cost
Name
University of Illinois at Chicago
Department
Type
Schools of Nursing
DUNS #
City
Chicago
State
IL
Country
United States
Zip Code
60612
Gallo, Agatha M; Wilkie, Diana J; Yao, Yingwei et al. (2016) Reproductive Health CHOICES for Young Adults with Sickle Cell Disease or Trait: Randomized Controlled Trial Outcomes over Two Years. J Genet Couns 25:325-36
Wilkie, Diana J (2016) Research to advance health and health care for individuals with sickle cell disease: a drop in the bucket of needed research. J Adv Nurs 72:1396-7
Hershberger, Patricia E; Gallo, Agatha M; Molokie, Robert et al. (2016) Perception of young adults with sickle cell disease or sickle cell trait about participation in the CHOICES randomized controlled trial. J Adv Nurs 72:1430-40
Hershberger, Patricia E; Gallo, Agatha M; Molokie, Robert et al. (2016) Toward understanding family-related characteristics of young adults with sickle-cell disease or sickle-cell trait in the USA. J Clin Nurs 25:1587-97
Gallo, Agatha M; Wilkie, Diana J; Wang, Edward et al. (2014) Evaluation of the SCKnowIQ tool and reproductive CHOICES intervention among young adults with sickle cell disease or sickle cell trait. Clin Nurs Res 23:421-41
Wilkie, Diana J; Gallo, Agatha M; Yao, Yingwei et al. (2013) Reproductive health choices for young adults with sickle cell disease or trait: randomized controlled trial immediate posttest effects. Nurs Res 62:352-61
Ryan, Catherine J; Choi, Heeseung; Fritschi, Cynthia et al. (2013) Challenges and solutions for using informatics in research. West J Nurs Res 35:722-41
Wilkie, Diana J; Molokie, Robert; Boyd-Seal, Debra et al. (2010) Patient-reported outcomes: descriptors of nociceptive and neuropathic pain and barriers to effective pain management in adult outpatients with sickle cell disease. J Natl Med Assoc 102:18-27
Gallo, Agatha M; Wilkie, Diana; Suarez, Marie et al. (2010) Reproductive decisions in people with sickle cell disease or sickle cell trait. West J Nurs Res 32:1073-90