Improving Uptake of Hydroxyurea in Patients with Sickle Cell Disease: A Retrospective Study of a Clinic-based Change in Consenting Practices

Smith, Ashley; Bodas, Prasad; Sidebotham, Lisa; Weilnau, JoEllen; Wildman, Beth G.

doi:10.1016/j.jnma.2018.09.004

Cited by 8 publications

(10 citation statements)

References 34 publications

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“…Side effects such as hair loss, nausea, neutropenia, and oligospermia are reversible; and often may not reappear when hydroxyurea is stopped and restarted at a lower dose. Therefore, a consent procedure involving patients and their caregivers, emphasizing benefits and clarifying the possibility of reversible side effects, may help to improve hydroxyurea uptake ( Smith et al, 2019 ). Additionally, patients are supposed to be monitored for HbF induction and full blood count parameters and, if undesirable effects such as very low blood cell counts (neutropenia) are observed, medication is discontinued temporarily.…”

Section: Discussionmentioning

confidence: 99%

Barriers to Therapeutic Use of Hydroxyurea for Sickle Cell Disease in Nigeria: A Cross-Sectional Survey

Okocha

Gyamfi²,

Ryan³

et al. 2022

Front. Genet.

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Background: Sickle cell disease, the inherited blood disorder characterized by anemia, severe pain and other vaso-occlusive complications, acute chest syndrome, disproportionate hospitalization, and early mortality, has significant financial, social, and psychosocial impacts and drains individuals, families, and health systems globally. Hydroxyurea could improve the health of the 300,000 individuals born each year with sickle cell disease in sub-Saharan Africa; however, challenges to adoption and adherence persist. This study assessed the barriers to therapeutic use of hydroxyurea for sickle cell disease within the Nigerian healthcare system, specifically from the level of the patient, provider, and health system.Methods: We used purposive sampling to recruit participants from 13 regions in Nigeria. A cross-sectional survey was administered to physicians (n = 70), nurses or counselors (n = 17), and patients or their caregivers (n = 33) at 13 health centers. Findings were mapped onto the appropriate Consolidated Framework for Implementation Research (CFIR) domains.Results: This study was able to identify factors that mapped onto the inner setting, outer setting, and characteristics of individuals domains of CFIR. The majority of physicians (74.3%) prescribe hydroxyurea, and half stated hydroxyurea is the standard of care. Among clinicians, barriers included limited knowledge of the drug, as well as low self-efficacy to prescribe among physicians and to counsel among nurses; perceived side effects; perceived patient preference for traditional medicine; cost for patient and expense of accompanying laboratory monitoring; and limited availability of the drug and equipment for laboratory monitoring. Among patients and caregivers, barriers included lack of knowledge; perceived side effects; cost; religious beliefs of disease causation; and lack of pediatric formulation.Conclusions: Findings suggest that patient, provider, and health systems-level interventions are needed to improve hydroxyurea uptake among providers and adherence among patients with sickle cell disease in Nigeria. Interventions such as patient education, provider training, and policy change could address the disproportionate burden of sickle cell disease in sub-Saharan Africa and thus improve health equity.

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Section: Discussionmentioning

confidence: 99%

Barriers to Therapeutic Use of Hydroxyurea for Sickle Cell Disease in Nigeria: A Cross-Sectional Survey

Okocha

Gyamfi²,

Ryan³

et al. 2022

Front. Genet.

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“…Therefore, a consent procedure involving patients and their caregivers, emphasizing bene ts and clarifying the possibility of reversible side effects, may help to improve hydroxyurea uptake. 18 Additionally, patients are supposed to be monitored for HbF induction and full blood count parameters and, if undesirable effects such as very low blood cell counts (neutropenia) are observed, medication discontinued temporarily for a few months and dosage reduced. Proper education of patients and caregivers about the reversibility of side effects during the recovery window might encourage more patients to continue hydroxyurea uptake until the desired effects are observed.…”

Section: Discussionmentioning

confidence: 99%

Barriers to Therapeutic Use of Hydroxyurea for Sickle Cell Disease in Nigeria: A Cross-sectional Survey

Chide¹,

Gyamfi²,

Ryan³

et al. 2020

Preprint

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Background: Sickle cell disease, the inherited blood disorder characterized by anemia, severe pain and other vaso-occlusive complications, acute chest syndrome, disproportionate hospitalization, and early mortality, has significant financial, social, and psychosocial impacts and drains individuals, families, and health systems globally. Hydroxyurea could improve the health of the 300,000individuals borneach year with sickle cell disease in sub-Saharan Africa; however, challenges to adoption and adherence persist. This study assessed the barriersto therapeutic use of hydroxyurea forsickle cell diseasewithin the Nigerian healthcare system, specifically from the level of the patient, provider, and health system.Methods:A cross-sectionalsurvey was administered to physicians (n=70), nurses or counselors (n=17), and patients or their caregivers (n=33) at 13 health centers.Results: The majority of physicians (74.3%) prescribe hydroxyurea, and half stated hydroxyurea is the standard of care. Among clinicians, barriers includedlimited knowledge of the drug, as well as low self-efficacy to prescribe among physicians and to counsel among nurses;perceived side effects;perceived patient preference for traditional medicine;cost for patient and expense of accompanying laboratory monitoring;and limited availability of the drug and equipment for laboratory monitoring. Among patients and caregivers, barriers included lack of knowledge; perceived side effects; cost;religious beliefs of disease causation; and lack of pediatric formulation.Conclusions: Findings suggest that patient, provider, and health systems-level interventionsare needed to improve hydroxyurea uptake among providers and adherence among patients with sickle cell disease in Nigeria. Interventions such as patient education, provider training, and policy change could address the disproportionate burden of sickle cell disease in sub-Saharan Africa and thus improve health equity.

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“…Previously, medical providers only offered hydroxyurea to children with SCA with persistent pain or other severe SCA-related complications. Despite these guidelines, hydroxyurea uptake remains low in young children with SCA [ 8 ]. Barriers to taking hydroxyurea include a lack of caregiver knowledge about hydroxyurea, providers’ hesitancy to prescribe hydroxyurea, and concerns about poor adherence to the treatment [ 9 ].…”

Section: Introductionmentioning

confidence: 99%

“…NHLBI guidelines encourage using shared decision making (SDM) when providers offer hydroxyurea, which involves a collaborative process wherein clinicians, patients, and families work together to reach a mutual agreement about the course of treatment [ 7 , 10 ]. However, the only widely distributed tool to assist providers in implementing the NHLBI guidelines for hydroxyurea is a clinician pocket guide developed by the American Society of Hematology (ASH) [ 8 ]. The pocket guide was a critical first step, but it only targeted clinician motivation.…”

Section: Introductionmentioning

confidence: 99%

Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea: Protocol for a Multicenter Randomized Controlled Trial

et al. 2021

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Background Sickle cell anemia (SCA) is a genetic blood disorder that puts children at a risk of serious medical complications, early morbidity and mortality, and high health care utilization. Until recently, hydroxyurea was the only disease-modifying treatment for this life-threatening disease and has remained the only option for children younger than 5 years. Evidence-based guidelines recommend using a shared decision-making (SDM) approach for offering hydroxyurea to children with SCA (HbSS or HbS/β0 thalassemia) aged as early as 9 months. However, the uptake remains suboptimal, likely because caregivers lack information about hydroxyurea and have concerns about its safety and potential long-term side effects. Moreover, clinicians do not routinely receive training or tools, especially those that provide medical evidence and consider caregivers’ preferences and values, to facilitate a shared discussion with caregivers. Objective The aim of this study is to understand how best to help parents of young children with sickle cell disease and their clinicians have a shared discussion about hydroxyurea (one that considers medical evidence and parent values and preferences). Methods We designed our study to compare the effectiveness of two methods for disseminating hydroxyurea guidelines to facilitate SDM: a clinician pocket guide (ie, usual care) and a clinician hydroxyurea SDM toolkit (H-SDM toolkit). Our primary outcomes are caregiver reports of decisional uncertainty and knowledge of hydroxyurea. The study also assesses the number of children (aged 0-5 years) who were offered and prescribed hydroxyurea and the resultant health outcomes. Results The Ethics Committee of the Cincinnati Children’s Hospital Medical Center approved this study in November 2017. As of February 2021, we have enrolled 120 caregiver participants. Conclusions The long-term objective of this study is to improve the quality of care for children with SCA. Using multicomponent dissemination methods developed in partnership with key stakeholders and designed to address barriers to high-quality care, caregivers of patients with SCA can make informed and shared decisions about their health. Trial Registration ClinicalTrials.gov NCT03442114; https://clinicaltrials.gov/ct2/show/NCT03442114 International Registered Report Identifier (IRRID) DERR1-10.2196/27650

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Improving Uptake of Hydroxyurea in Patients with Sickle Cell Disease: A Retrospective Study of a Clinic-based Change in Consenting Practices

Cited by 8 publications

References 34 publications

Barriers to Therapeutic Use of Hydroxyurea for Sickle Cell Disease in Nigeria: A Cross-Sectional Survey

Barriers to Therapeutic Use of Hydroxyurea for Sickle Cell Disease in Nigeria: A Cross-Sectional Survey

Barriers to Therapeutic Use of Hydroxyurea for Sickle Cell Disease in Nigeria: A Cross-sectional Survey

Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea: Protocol for a Multicenter Randomized Controlled Trial

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