ArticleAmerican journal of preventive medicine2016
Mistrust of Pediatric Sickle Cell Disease Clinical Trials Research.
Article in American journal of preventive medicine, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers.
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
25 citing papers in PubMed, 38 citations in OpenAlex.
- Using the consolidated framework for implementation research to identify recruitment barriers and targeted strategies for a shared decision-making randomized clinical trial in pediatric sickle cell disease.Clinical trials (London, England) · 2023Trial
- Bright IDEAS problem-solving skills training for caregivers of children with sickle cell disease: A two-site pilot feasibility trial.Pediatric blood & cancer · 2021Trial
- Article
- Prevalence of Medical Mistrust and Its Impact on Patient Satisfaction in Pediatric Caregivers.Journal of racial and ethnic health disparities · 2025Article
- Measuring (Mis)trust in the age of COVID-19: viewpoints of vaccine clinical trial participation among individuals living with sickle cell disease.BMC public health · 2025Article
- "How Fluent Do I Need to Be to Say I'm Fluent?" Research Experiences of Communities that Speak Languages Other than English.Community health equity research & policy · 2025Article
- A patient-centered, theory-guided approach to examining the barriers and enablers to trial participation among people with SCD.Journal of sickle cell disease · 2025Article
- Racial discrimination and health-care system trust among American adults with and without cancer.Journal of the National Cancer Institute · 2024Article
- Understanding perceptions of tumor genomic profile testing in Black/African American cancer patients in a qualitative study: the role of medical mistrust, provider communication, and family support.Journal of community genetics · 2024Article
- Diversity, Equity, and Inclusion within Pediatric Adherence Science.Journal of clinical psychology in medical settings · 2023Article
- Comparison of CAT and short forms for PROMIS pain and physical health domains in children with sickle cell disease.Journal of patient-reported outcomes · 2023Article
- Process and strategies for patient engagement and outreach in the Sickle Cell Disease (SCD) community to promote clinical trial participation.Journal of the National Medical Association · 2022Article
- Prevalence and correlates of invitation to participate in clinical trials among US adults.Preventive medicine reports · 2022Article
- Cost-effectiveness of a hypothetical cell or gene therapy cure for sickle cell disease.Scientific reports · 2021Article
- Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea: Protocol for a Multicenter Randomized Controlled Trial.JMIR research protocols · 2021Article
- Genetic therapies for the first molecular disease.The Journal of clinical investigation · 2021Review
- Toward a Conversational Agent to Support the Self-Management of Adults and Young Adults With Sickle Cell Disease: Usability and Usefulness Study.Frontiers in digital health · 2021Article
- Intentional and unintentional nonadherence to hydroxyurea among people with sickle cell disease: a qualitative study.Blood advances · 2020Article
- Motivations and Decision-Making of Adult Sickle Cell Patients in High-Risk Clinical Research.Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation · 2020Article
- Factors Influencing Motivation and Engagement in Mobile Health Among Patients With Sickle Cell Disease in Low-Prevalence, High-Income Countries: Qualitative Exploration of Patient Requirements.JMIR human factors · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 1 country.
Funding
Abstract
introductionSickle cell disease (SCD) research is hampered by disparities in participation due in part to mistrust of research among racial/ethnic minorities. Beyond the historic context of research misconduct, little is known about the associations of social ecologic factors with mistrust and of mistrust with SCD clinical trials enrollment. This study evaluated proximal (age, gender, disease severity, perceived stress, SES) and distal (religious beliefs, social support, instrumental support) factors related to mistrust of research among caregivers of children with SCD and adolescents and young adults (AYAs) with SCD.
methodsOver an 18-month period (2009-2010), participants completed questionnaires of perceived barriers and benefits to clinical trials enrollment, perceived stress, and self-reported demographic and disease-related information. Analyses (January-June 2015) used multivariable linear regressions to evaluate predictors of mistrust.
resultsData were analyzed for 154 caregivers (mean age, 38.75 years; SD=9.56 years; 90.30% female) and 88 AYAs (mean age, 24.76 years; SD=7.25 years; 46.40% female). Among caregivers (full model, R(2)=0.14, p≤0.001), greater mistrust was explained by higher perceived stress (β=0.04, p=0.052); religious beliefs (β=0.61, p≤0.001); and greater instrumental support (β=0.07, p=0.044). Among AYAs (full model, R(2)=0.18, p≤0.001), higher mistrust was explained by being male (β=-0.56, p≤0.001) and lower instrumental support (β=-0.11, p=0.016). Mistrust was significantly greater among caregivers that reported no prior involvement in medical research (p=0.003).
conclusionsBy understanding the complexity through which social ecologic factors contribute to mistrust, researchers may create targeted strategies to address mistrust and increase engagement in SCD research for caregivers and AYAs.
Indexed as
Identifiers
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.