Many people with sickle cell disease (SCO) or sickle cell trait (SCT) lack sufficient reproductive health knowledge about the genetic transmission of the condition to their children. We propose a two-phase study of adult men and women, aged 18 to 35 years, with SCD or SCT, and recruited from SCD clinical care or community sites in Chicago. One phase is formative and the other is a longitudinal, randomized controlled trial to compare the effects of usual care or usual care plus CHOICES on reproductive health knowledge, intentions, and behaviors. The CHOICES intervention is an Internet-based, tailored, multimedia education program about reproductive options and consequences, and is designed to help men and women with SCD or SCT to implement a parenting plan that will support their informed reproductive health decisions and reproductive health behaviors. In phase 1. we will conduct think aloud interviews with a group of 50 adults as they review the CHOICES intervention and study instruments and readminister study tools 3-4 weeks afterward to assess reliability. Using findings from phase 1, we will refine the CHOICES intervention and instruments. We expect that the think aloud interviews will support the feasibility and cultural appropriateness of the CHOICES intervention and validity of the instruments and retest will support reliability. In phase 2. we will conduct a 2-year, randomized, repeated measures trial in 200 adults (half with SCD, half with SCT) to: compare immediate effects of usual care or usual care plus CHOICES on SC reproductive health knowledge, informed reproductive health decisions, and intention to implement a parenting plan; 2) determine the sustained effects on SC reproductive health know-ledge and Informed reproductive health decisions (at 6 &12 months) and reproductive health behaviors (at 6,12,18, &24 months). At 6 &12 months, we will provide the CHOICES group with a booster of the CHOICES education tailored to their knowledge deficits at posttest and at 6 and 12 months;and 3) describe changes in personal factors and subjective norms, and other demographic factors related to reproductive health intentions and behavior during the two-year study. We hypothesize that immediate (posttest) and sustained (6 &12 months) SC knowledge scores and informed decisions scores will be greater in the CHOICES than usual care groups;a larger proportion of the CHOICES group than usual care group (a) will report intention to implement a parenting plan (at posttest, 6 &12 months);and (b) have reproductive health behaviors consistent with the parenting plan (at 6,12,18, &24 months). We also expect to describe changes in personal and subjective norm factors over the 2 year study period in the CHOICES and usual care groups. Ultimately we will be well positioned to lead a Nationwide, multicenter study translating CHOICES into routine clinical care of SCD patients, which would provide the sorely needed education about the genetic transmission of SCD and SCT.

Agency
National Institute of Health (NIH)
Institute
National Heart, Lung, and Blood Institute (NHLBI)
Type
Specialized Center--Cooperative Agreements (U54)
Project #
5U54HL090513-02
Application #
7843551
Study Section
Special Emphasis Panel (ZHL1)
Project Start
2009-04-01
Project End
2012-03-31
Budget Start
2009-04-01
Budget End
2010-03-31
Support Year
2
Fiscal Year
2009
Total Cost
$1,059,845
Indirect Cost
Name
University of Illinois at Chicago
Department
Type
DUNS #
098987217
City
Chicago
State
IL
Country
United States
Zip Code
60612
Ezenwa, Miriam O; Yao, Yingwei; Molokie, Robert E et al. (2017) Coping with Pain in the Face of Healthcare Injustice in Patients with Sickle Cell Disease. J Immigr Minor Health 19:1449-1456
Ezenwa, Miriam O; Molokie, Robert E; Wang, Zaijie Jim et al. (2016) Satisfied or not satisfied: pain experiences of patients with sickle cell disease. J Adv Nurs 72:1398-408
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; 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
Ezenwa, Miriam O; Molokie, Robert E; Wang, Zaijie Jim et al. (2016) Safety and Utility of Quantitative Sensory Testing among Adults with Sickle Cell Disease: Indicators of Neuropathic Pain? Pain Pract 16:282-93
Ezenwa, Miriam O; Molokie, Robert E; Wilkie, Diana J et al. (2015) Perceived injustice predicts stress and pain in adults with sickle cell disease. Pain Manag Nurs 16:294-306
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

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