2021
Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea: Protocol for a Multicenter Randomized Controlled Trial
Hood AM, Strong H, Nwankwo C, Johnson Y, Peugh J, Mara CA, Shook LM, Brinkman WB, Real FJ, Klein MD, Hackworth R, Badawy SM, Thompson AA, Raphael JL, Yates AM, Smith-Whitley K, King AA, Calhoun C, Creary SE, Piccone CM, Hildenbrand AK, Reader SK, Neumayr L, Meier ER, Sobota AE, Rana S, Britto M, Saving KL, Treadwell M, Quinn CT, Ware RE, Crosby LE. Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea: Protocol for a Multicenter Randomized Controlled Trial. JMIR Research Protocols 2021, 10: e27650. PMID: 34018965, PMCID: PMC8178738, DOI: 10.2196/27650.Peer-Reviewed Original ResearchSickle cell anemiaINTERNATIONAL REGISTERED REPORT IDENTIFIERHospital Medical CenterCell anemiaCincinnati Children's Hospital Medical CenterOnly disease-modifying treatmentHigher health care utilizationPotential long-term side effectsChildren's Hospital Medical CenterLong-term side effectsDisease-modifying treatmentsCaregivers of patientsHealth care utilizationEvidence-based guidelinesSerious medical complicationsResultant health outcomesSickle cell diseaseLife-threatening diseaseQuality of careHigh-quality careGenetic blood disorderProviders of childrenEarly morbidityControlled TrialsMedical complications
2020
Perceptions of US Adolescents and Adults With Sickle Cell Disease on Their Quality of Care
Kanter J, Gibson R, Lawrence RH, Smeltzer MP, Pugh NL, Glassberg J, Masese RV, King AA, Calhoun C, Hankins JS, Treadwell M. Perceptions of US Adolescents and Adults With Sickle Cell Disease on Their Quality of Care. JAMA Network Open 2020, 3: e206016. PMID: 32469413, PMCID: PMC7260622, DOI: 10.1001/jamanetworkopen.2020.6016.Peer-Reviewed Original ResearchConceptsSickle cell diseaseSickle Cell Disease Implementation ConsortiumCell diseaseInherited red blood cell disorderResponse rateQuality careAdequate quality carePerception of outpatientsUsual care cliniciansUsual care physiciansEmergency department careAcute care settingRed blood cell disordersHealth careMedical care experienceWorse health outcomesQuality of careMultiple health disparitiesBlood cell disordersQuality health careED satisfactionAcute painED visitsSevere painYounger patients