ArticleAmerican journal of hematology2021
Patient-reported neurocognitive symptoms influence instrumental activities of daily living in sickle cell disease.
Article in American journal of hematology, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers.
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Who cites it
20 citing papers in PubMed, 31 citations in OpenAlex.
- Feasibility of In-Home Virtual Reality for Chronic Pain in Sickle Cell Disease.Pain management nursing : official journal of the American Society of Pain Management Nurses · 2024Trial
- A multilevel mHealth intervention boosts adherence to hydroxyurea in individuals with sickle cell disease.Blood advances · 2023Trial
- Sustainment of Hydroxyurea Adherence in Patients With Sickle Cell Disease.JAMA network open · 2026Observational
- Mental health challenges associated with sickle cell disease and strategies to address them: Reflections from a community input panel.Journal of the National Medical Association · 2026Article
- Mechanism-informed transition from pediatric to adult care in sickle cell disease: a case study.BMC health services research · 2026Article
- Neurocognitive functioning of patients with sickle cell disease in low- and middle-income countries.Blood global hematology · 2025Article
- Investigating Disruptions in Information Flow due to Sickle Cell Disease Using Granger Causality.Human brain mapping · 2025Article
- Sensitivity and Specificity of a Signaling Question for Surveillance of Cognitive Functioning in Pediatric Sickle Cell Disease.Pediatric blood & cancer · 2025Article
- Depression, sleep and pain affect instrumental activities of daily living through cognitive functioning in adults with sickle cell disease: A report from the Sickle Cell Disease Implementation Consortium.British journal of haematology · 2025Article
- Article
- Hydroxyurea Adherence for Personal Best in Sickle Cell Treatment (HABIT) efficacy trial: Community health worker support may increase hydroxyurea adherence of youth with sickle cell disease.Pediatric blood & cancer · 2024Article
- Neurocognitive and emotional factors predict pain-related healthcare utilization in children with sickle cell disease.Pediatric blood & cancer · 2023Article
- Health literacy correlates with abbreviated full-scale IQ in adolescent and young adults with sickle cell disease.Pediatric blood & cancer · 2023Article
- Neuroimaging and Cognitive Function in Sickle Cell Disease: A Systematic Review.Children (Basel, Switzerland) · 2023Review
- Mind the gap: trajectory of cognitive development in young individuals with sickle cell disease: a cross-sectional study.Frontiers in neurology · 2023Article
- Adaptive Functioning in Children and Adolescents With Sickle Cell Disease.Journal of pediatric psychology · 2022Article
- Cognitive Impairment in Primary and Secondary Headache Disorders.Current pain and headache reports · 2022Review
- Testosterone Deficiency in Sickle Cell Disease: Recognition and Remediation.Frontiers in endocrinology · 2022Review
- Epidemiology of Stroke in Sickle Cell Disease.Journal of clinical medicine · 2021Review
- Chronic Pain Treatment and Digital Health Era-An Opinion.Frontiers in public health · 2021Article
Corrections and comments
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Authors and funding
13 authors at 11 institutions in 1 country.
Funding
Abstract
Individuals with sickle cell disease (SCD) experience neurocognitive decline, low medication adherence, increased unemployment, and difficulty with instrumental activities of daily living (IADL). The relationship between self-perceived cognitive difficulties and IADLs, including employment, school enrollment, independence, engagement in leisure activities, and medication adherence is unknown. We hypothesized that self-reported difficulties across neurocognitive areas would predict lower IADL skills. Adolescent and adult participants of the multi-site Sickle Cell Disease Implementation Consortium (SCDIC) (n = 2436) completed patient-reported outcome (PRO) measures of attention, executive functioning, processing speed, learning, and comprehension. Cognitive symptoms were analyzed as predictors in multivariable modeling. Outcome variables included 1) an IADL composite that consisted of employment, participation in school, reliance on others, and leisure pursuits, and 2) hydroxyurea adherence. Participants reported cognitive difficulty across areas of attention (55%), executive functioning (51%), processing speed (57%), and reading comprehension (65%). Executive dysfunction (p < 0.001) and sometimes or often experiencing learning difficulties (p < 0.001 and p = 0.04) and poor comprehension (p = 0.000 and p = 0.001), controlled for age (p < 0.001), pain (p < 0.001), and hydroxyurea use (p = 0.001), were associated with poor IADL skills. Executive functioning difficulties (p = 0.021), controlled for age (p = 0.013 for ages 25-34), genotype (p = 0.001), and hemoglobin (p = 0.004), predicted hydroxyurea non-adherence. Analysis of PRO measures indicated that cognitive dysfunction is prevalent in adolescents and adults with SCD. Cognitive dysfunction translated into clinically meaningful outcomes. PRO of cognitive symptoms can be used as an important adjunct clinical tool to monitor symptoms that impact functional skills, including engagement in societal activities and medication adherence.
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Registered trials
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