دورية أكاديمية
أعرض في EDS

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

التفاصيل البيبلوغرافية
العنوان: Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea: Protocol for a Multicenter Randomized Controlled Trial
المؤلفون: Hood, Anna M, Strong, Heather, Nwankwo, Cara, Johnson, Yolanda, Peugh, James, Mara, Constance A, Shook, Lisa M, Brinkman, William B, Real, Francis J, Klein, Melissa D, Hackworth, Rogelle, Badawy, Sherif M, Thompson, Alexis A, Raphael, Jean L, Yates, Amber M, Smith-Whitley, Kim, King, Allison A, Calhoun, Cecelia, Creary, Susan E, Piccone, Connie M, Hildenbrand, Aimee K, Reader, Steven K, Neumayr, Lynne, Meier, Emily R, Sobota, Amy E, Rana, Sohail, Britto, Maria, Saving, Kay L, Treadwell, Marsha, Quinn, Charles T, Ware, Russell E, Crosby, Lori E
المصدر: JMIR Research Protocols, Vol 10, Iss 5, p e27650 (2021)
بيانات النشر: JMIR Publications, 2021.
سنة النشر: 2021
المجموعة: LCC:Medicine
LCC:Computer applications to medicine. Medical informatics
مصطلحات موضوعية: Medicine, Computer applications to medicine. Medical informatics, R858-859.7
الوصف: BackgroundSickle 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. ObjectiveThe 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). MethodsWe 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. ResultsThe 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. ConclusionsThe 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 RegistrationClinicalTrials.gov NCT03442114; https://clinicaltrials.gov/ct2/show/NCT03442114Test International Registered Report Identifier (IRRID)DERR1-10.2196/27650
نوع الوثيقة: article
وصف الملف: electronic resource
اللغة: English
تدمد: 1929-0748
العلاقة: https://www.researchprotocols.org/2021/5/e27650Test; https://doaj.org/toc/1929-0748Test
DOI: 10.2196/27650
الوصول الحر: https://doaj.org/article/201e9141132640c28da3f5e73730f50bTest
رقم الانضمام: edsdoj.201e9141132640c28da3f5e73730f50b
قاعدة البيانات: Directory of Open Access Journals
الوصف
تدمد:19290748
DOI:10.2196/27650