title: Evaluation of the SCKnowIQ tool and reproductive CHOICES intervention among young adults with sickle cell disease or sickle cell trait.
abstract: The study purpose was to evaluate a computer-based questionnaire (SCKnowIQ) and CHOICES educational intervention using cognitive interviewing with childbearing-aged people with sickle cell disease (SCD) or trait (SCT). Ten control group participants completed the SCKnowIQ twice. Ten intervention group participants completed the SCKnowIQ before and after the CHOICES intervention. Most participants found the questionnaire items appropriate and responded to items as the investigators intended. Participants' responses indicated that the information on SCD and SCT and reproductive options was understandable, balanced, important, and new to some. Internal consistency and test-retest reliability were adequate (.47 to .87) for 4 of the 6 scales, with significant within-group changes in knowledge scores for the intervention group but not for the control group. Findings show evidence for potential efficacy of the intervention, but proof of efficacy requires a larger randomized study.
authors.affiliation: University of Illinois at Chicago, College of Nursing, Department of Women, Children and Family Health Science, Chicago, IL, USA Basic and Translational Research Program, Comprehensive Sickle Cell Center, University of Illinois at Chicago, Chicago, IL, USA agallo@uic.edu.
authors.forename: Agatha M
authors.initials: AM
authors.lastname: Gallo
authors.affiliation: University of Illinois at Chicago, College of Nursing, Department of Biobehavioral Health Science, Chicago, IL, USA Basic and Translational Research Program, Comprehensive Sickle Cell Center, University of Illinois at Chicago, Chicago, IL, USA.
authors.forename: Diana J
authors.initials: DJ
authors.lastname: Wilkie
authors.affiliation: University of Illinois at Chicago, College of Applied Health Sciences,Department of Biomedical and Health Information Sciences, Chicago, IL, USA.
authors.forename: Edward
authors.initials: E
authors.lastname: Wang
authors.affiliation: University of Illinois at Chicago Department of Pediatrics, Chicago, IL, USA.
authors.forename: Richard J
authors.initials: RJ
authors.lastname: Labotka
authors.affiliation: University of Illinois at Chicago, College of Medicine, Department of Medicine, Division of Hematology/Oncology, Chicago, IL, USA Jesse Brown Veteran's Administration Medical Center, Chicago, IL, USA Basic and Translational Research Program, Comprehensive Sickle Cell Center, University of Illinois at Chicago, Chicago, IL, USA.
authors.forename: Robert E
authors.initials: RE
authors.lastname: Molokie
authors.affiliation: University of Illinois at Chicago, College of Medicine, Department of Pediatrics, General Pediatrics and Adolescent Medicine, Chicago, IL, USA.
authors.forename: Christiane
authors.initials: C
authors.lastname: Stahl
authors.affiliation: University of Illinois at Chicago, College of Nursing, Department of Women, Children and Family Health Science, Chicago, IL, USA.
authors.forename: Patricia E
authors.initials: PE
authors.lastname: Hershberger
authors.affiliation: University of Illinois at Chicago, College of Nursing, Department of Biobehavioral Health Science, Chicago, IL, USA.
authors.forename: Zhongsheng
authors.initials: Z
authors.lastname: Zhao
authors.affiliation: University of Illinois at Chicago, College of Nursing, Department of Biobehavioral Health Science, Chicago, IL, USA.
authors.forename: Marie L
authors.initials: ML
authors.lastname: Suarez
authors.affiliation: Basic and Translational Research Program, Comprehensive Sickle Cell Center, University of Illinois at Chicago, Chicago, IL, USA.
authors.forename: Bonnye
authors.initials: B
authors.lastname: Johnson
authors.affiliation: University of Illinois at Chicago, College of Nursing, Department of Biobehavioral Health Science, Chicago, IL, USA.
authors.forename: Cherese
authors.initials: C
authors.lastname: Pullum
authors.affiliation: University of Illinois at Chicago, College of Nursing, Department of Biobehavioral Health Science, Chicago, IL, USA.
authors.forename: Rigoberto
authors.initials: R
authors.lastname: Angulo
authors.affiliation: Northwestern University Feinberg School of Medicine, Division of Pediatric Hematology, Oncology, Stem Cell Transplantation; Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
authors.forename: Alexis
authors.initials: A
authors.lastname: Thompson
mesh_terms: D000293:Adolescent; D000328:Adult; D000755:Anemia, Sickle Cell / Q000503:physiopathology* / Q000523:psychology; D002755:Choice Behavior; D005260:Female; D006801:Humans; D008297:Male; D012098:Reproduction; D012805:Sickle Cell Trait / Q000503:physiopathology* / Q000523:psychology; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: cognitive interviews; computer-based education; reproductive; sickle cell disease (SCD); sickle cell trait (SCT)