ArticleHealth and quality of life outcomes2017
Adherence to hydroxyurea, health-related quality of life domains, and patients' perceptions of sickle cell disease and hydroxyurea: a cross-sectional study in adolescents and young adults.
Article in Health and quality of life outcomes, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 57 papers, 4 of them syntheses that pooled it.
What it found
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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
57 citing papers in PubMed, 4 syntheses or guidelines pooled it, 105 citations in OpenAlex.
- Health-Related Quality of Life and Adherence to Hydroxyurea and Other Disease-Modifying Therapies among Individuals with Sickle Cell Disease: A Systematic Review.BioMed research international · 2022Pooled it
- Health-related quality of life in hemoglobinopathies: A systematic review from a global perspective.Frontiers in pediatrics · 2022Pooled it
- Habit Strength, Medication Adherence, and Habit-Based Mobile Health Interventions Across Chronic Medical Conditions: Systematic Review.Journal of medical Internet research · 2020Pooled it
- Patient-Centered eHealth Interventions for Children, Adolescents, and Adults With Sickle Cell Disease: Systematic Review.Journal of medical Internet research · 2018Pooled it
- HABIT Efficacy Trial Intervention Improves Elements of General and Disease-Specific Quality of Life in Youth With Sickle Cell Disease.Pediatric blood & cancer · 2025Trial
- Patient-reported outcomes in sickle cell disease and association with clinical and psychosocial factors: Report from the sickle cell disease implementation consortium.American journal of hematology · 2020Trial
- Underutilisation of hydroxyurea in sickle cell disease: a global scoping review of multilevel barriers and facilitators.Journal of community genetics · 2026Review
- The Role of Associated Treatment Factors and Mental Health on Transition From Pediatric to Adult Care for Adolescent/Young Adults With Sickle Cell Disease.Pediatric blood & cancer · 2026Article
- Factors associated with longitudinal hydroxyurea adherence trajectories among individuals with sickle cell disease in Texas Medicaid: A group-based trajectory modeling study.Therapeutic advances in hematology · 2026Article
- Predicting Medication Adherence in Sickle Cell Disease and Thalassemia in Oman: The Role of Beliefs and Fatigue.Patient preference and adherence · 2026Article
- Genotype Differences and Hydroxyurea Utilization Among Adults With Moderate to Severe Sickle Cell Disease.Pharmacotherapy · 2026Article
- Evaluating the long-term benefits of hydroxyurea in pediatric sickle cell anemia.Blood advances · 2025Article
- Hydroxyurea utilization among individuals with sickle cell disease in Tennessee: a pooled analysis of claims data.Frontiers in pharmacology · 2025Article
- Health-Related Quality of Life Measurement in Adults With Sickle Cell Disease in Steady State: Experience of One French Reference Center.Mediterranean journal of hematology and infectious diseases · 2025Article
- Hemoglobinopathies Among Patients Referred to Single Centre in Central India: An Observational Study.Indian journal of clinical biochemistry : IJCB · 2025Article
- Clinical Insights into Sickle Cell Disease: A Comprehensive Multicenter Retrospective Analysis of Clinical Characteristics and Outcomes Across Different Age Groups.Journal of clinical medicine · 2024Article
- Hydroxyurea mobile directly observed therapy versus standard monitoring in patients with sickle cell anemia: a phase 2 randomized trial.Communications medicine · 2024Article
- Adherence to Hydroxyurea and Patients' Perceptions of Sickle Cell Disease and Hydroxyurea: A Cross-Sectional Study.Medicina (Kaunas, Lithuania) · 2024Article
- Article
- Provider prescription of hydroxyurea in youth and adults with sickle cell disease: A review of prescription barriers and facilitators.British journal of haematology · 2023Review
Corrections and comments
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Authors and funding
6 authors at 2 institutions in 2 countries.
Funding
Abstract
backgroundSickle cell disease (SCD) patients have impaired domains of health-related quality of life (HRQOL). Hydroxyurea is safe and efficacious in SCD; however, adherence is suboptimal, and patients' perceptions are poorly understood amongst adolescents and young adults (AYA). Study objectives were to: (1) examine patients' perceptions of SCD and hydroxyurea; and (2) explore the relationship of their perceptions to clinical characteristics, HRQOL domains and hydroxyurea adherence.
methodsThirty-four SCD patients on hydroxyurea (≥6 months) participated in a single-institution study. Study measures included Brief-Illness Perceptions Questionnaire, ©Modified Morisky Adherence Scale 8-items, and Patient Reported Outcomes Measurement Information System (PROMIS®). We assessed the relationship of patients' perceptions to hydroxyurea adherence using Wilcoxon rank-sum test, the number of hospitalizations using Kruskal-Wallis test, and the number of ED visits, adherence level, HRQOL domain scores using Spearman's rho correlations. We conducted a sub-analysis in HbSS patients to evaluate the relationship of patients' perceptions to laboratory markers of hydroxyurea adherence.
resultsParticipants were 59% male and 91% Black, and had a median age of 13.5 (range 12-18) years. Participants with ≥4 hospitalizations over 1-year prior (using electronic medical chart review) reported more negative perceptions of SCD-related symptoms and emotional response, and perceived hydroxyurea as less beneficial; all p-values ≤0.01. Most participants (74%) reported low hydroxyurea adherence. Participants with higher hydroxyurea adherence perceived more hydroxyurea benefits (r
conclusionsDynamics influencing hydroxyurea adherence are multifactorial, and understanding patients' perceptions is critical to overcoming adherence barriers. Patients' favorable perceptions correlated with greater adherence and better HRQOL domain scores. Prospective evaluation of patients' perceptions of SCD and hydroxyurea in relation adherence, HRQOL domains and clinical outcomes is warranted.
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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.