ArticleIrish journal of medical science2022
Adherence to hydroxyurea, health-related quality of life domains and attitudes towards a smartphone app among Irish adolescents and young adults with sickle cell disease.
Article in Irish journal of medical science, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 1 of them a synthesis that pooled it.
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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.
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Who cites it
15 citing papers in PubMed, 1 synthesis or guideline pooled it, 20 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
- Improving Nocturnal Non-Invasive Positive Pressure Support Adherence in Children and Young Adults With Duchenne Muscular Dystrophy.Pediatric pulmonology · 2026Article
- Underutilisation of hydroxyurea in sickle cell disease: a global scoping review of multilevel barriers and facilitators.Journal of community genetics · 2026Review
- Beyond the Prescription: Hydroxycarbamide Utilization and Adherence Among Persons Living with Sickle Cell Disease in Rural Ghana.Patient preference and adherence · 2026Article
- Economic burden of sickle cell disease in Australia.Internal medicine journal · 2025Article
- Article
- Understanding patient-related barriers to hydroxyurea use among adolescent and adult patients with sickle cell disease in Mulago and Kiruddu hospitals, Uganda, a qualitative study.BMC health services research · 2024Article
- Their health is our wealth: lay perceptions on the health impacts of blood donation.Blood transfusion = Trasfusione del sangue · 2024Article
- VWF-ADAMTS13 axis dysfunction in children with sickle cell disease treated with hydroxycarbamide vs blood transfusion.Blood advances · 2023Article
- Self-Reported Medication Adherence Measured with Morisky Scales in Rare Disease Patients: A Systematic Review and Meta-Analysis.Healthcare (Basel, Switzerland) · 2023Review
- Neuroimaging and Cognitive Function in Sickle Cell Disease: A Systematic Review.Children (Basel, Switzerland) · 2023Review
- Motivators and barriers to blood donation among potential donors of African and Caucasian ethnicity.Blood transfusion = Trasfusione del sangue · 2023Article
- Liver Disease and Sickle Cell Disease: Auto-Immune Hepatitis more than a Coincidence; A Systematic Review of the Literature.Mediterranean journal of hematology and infectious diseases · 2023Review
- Reflections from a Psychologist Working with Sickle Cell and Thalassaemia Patients during the COVID-19 Pandemic.Medicina (Kaunas, Lithuania) · 2022Article
- Development and Validation of the Patient/Caregiver Reported Hydroxyurea Evaluation of Adherence for Life (HEAL) Scale.Patient preference and adherence · 2022Article
Corrections and comments
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Authors and funding
10 authors at 3 institutions in 1 country.
Funding
Abstract
introductionSCD patients experience declines in health-related quality of life (HRQOL) domains compared with healthy controls. Despite evidence supporting the benefits of hydroxyurea, medication non-adherence remains problematic, especially in adolescents and young adults (AYA). Adherence barriers include forgetfulness and lack of knowledge. Recently, increased interest in technology-based strategies to improve medication adherence has emerged. No data currently exists on hydroxyurea adherence, HRQOL or perceptions of technology-based tools in the Irish SCD population.
methodsIn order to interrogate these domains among Irish AYA SCD patients we administered an anonymous survey at two tertiary referral centres in Dublin, Ireland, in July 2019.
resultsSixty-three patients participated; 63% female and 37% male, with a median and mean age of 17 and 19 years, respectively. Average monthly adherence was 76% using a visual analogue scale. Recall barriers were present in 62% while 26% omit hydroxyurea for reasons other than forgetting. Reviewing HRQOL; only 36.5% felt always physically able to engage in recreational activities, while 51% experienced disruption to school/college/work due to pain. Eighty-one percent reported that anxiety about health interferes with their lives and non-adherence correlated with worse HRQOL outcomes. Interest in a smartphone app was expressed by the majority, with daily medication reminders being the most popular feature. Sharing adherence data with doctors and discussion forums were less appealing.
conclusionsRepresenting over 10% of the Irish SCD population, our survey provides novel and valuable insights into medication adherence and HRQOL domains. Preferred app features may inform future technology-based interventions to improve medication adherence in SCD and other chronic health conditions.
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Registered trials
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