Trial reportJournal of advanced nursing2016
Perception of young adults with sickle cell disease or sickle cell trait about participation in the CHOICES randomized controlled trial.
Trial report in Journal of advanced nursing, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
10 citing papers in PubMed, 1 synthesis or guideline pooled it, 16 citations in OpenAlex.
- Preconception risk assessment for thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease.The Cochrane database of systematic reviews · 2021Pooled it
- Reproductive Health CHOICES for Young Adults with Sickle Cell Disease or Trait: Randomized Controlled Trial Outcomes over Two Years.Journal of genetic counseling · 2016Trial
- Community-engaged research in psychological interventions for pediatric sickle cell disease: a scoping review.Journal of pediatric psychology · 2025Article
- Management of the Sickle Cell Trait: An Opinion by Expert Panel Members.Journal of clinical medicine · 2023Review
- CHOICES for sickle cell reproductive health: A protocol of a randomized preconception intervention model for a single gene disorder.PloS one · 2023Article
- Characteristics associated with the perceived likelihood to become parents among young adults with sickle cell disease or sickle cell trait in the USA.Journal of genetic counseling · 2022Article
- Genomic Health Literacy Interventions in Pediatrics: Scoping Review.Journal of medical Internet research · 2021Article
- Development of an Online Reproductive Health Intervention for Individuals with Sickle Cell Disease or Trait.Women's health reports (New Rochelle, N.Y.) · 2021Article
- Research to advance health and health care for individuals with sickle cell disease: a drop in the bucket of needed research.Journal of advanced nursing · 2016Article
- Toward understanding family-related characteristics of young adults with sickle-cell disease or sickle-cell trait in the USA.Journal of clinical nursing · 2016Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 3 institutions in 1 country.
Funding
Abstract
aimsTo gain an in-depth understanding of the perceptions of young adults with sickle cell disease and sickle cell trait about parenthood and participating in the CHOICES randomized controlled trial that used computer-based, educational programmes.
backgroundIn the USA, there is insufficient education to assure that all young adults with sickle cell disease or sickle cell trait understand genetic inheritance risks and reproductive options to make informed reproductive decisions. To address this educational need, we developed a computer-based, multimedia program (CHOICES) and reformatted usual care into a computer-based (e-Book) program. We then conducted a two-year randomized controlled trial that included a qualitative component that would deepen understanding of young adults' perceptions of parenthood and use of computer-based, educational programmes.
designA qualitative descriptive approach completed after a randomized controlled trial.
methodsSixty-eight men and women of childbearing age participated in semi-structured interviews at the completion of the randomized controlled trial from 2012-2013. Thematic content analysis guided the qualitative description. RESULTS/
findingsThree main themes were identified: (1) increasing knowledge and new ways of thinking and behaving; (2) rethinking parenting plans; and (3) appraising the program design and delivery. Most participants reported increased knowledge and rethinking of their parenting plans and were supportive of computer-based learning. Some participants expressed difficulty in determining individual transmission risks.
conclusionParticipants perceived the computer programs as beneficial to their learning. Future development of an Internet-based educational programme is warranted, with emphasis on providing tailored education or memory boosters about individual transmission risks.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.