2024
Deciding between Multiple Curative Options in Sickle Cell Disease: Cost-Effectiveness of Non-Myeloablative/Reduced Intensity Conditioning Haploidentical Allo-HSCT Vs Gene Therapy Vs Standard of Care in Adult Patients with Sickle Cell Disease
Chetlapalli K, Butt A, Ito S, Wang D, Calhoun C, Krishnamurti L, Pandya A, Goshua G. Deciding between Multiple Curative Options in Sickle Cell Disease: Cost-Effectiveness of Non-Myeloablative/Reduced Intensity Conditioning Haploidentical Allo-HSCT Vs Gene Therapy Vs Standard of Care in Adult Patients with Sickle Cell Disease. Blood 2024, 144: 601-601. DOI: 10.1182/blood-2024-203234.Peer-Reviewed Original ResearchChronic graft-versus-host diseaseSickle cell diseaseQuality-adjusted life yearsPost-transplant cyclophosphamideReduced intensity conditioningAllo-HSCTGene therapyCurative optionIncremental net monetary benefitProbabilistic sensitivity analysesMyeloablative conditioningHaploidentical donorsCell diseaseAdult patientsExpansion of donor poolUS health system perspectiveCenter for International Blood and Marrow Transplant ResearchGraft-versus-host diseaseEuropean Society for BloodSickle cell disease severityUS commercially insured patientsCost-effective therapeutic optionCost-effectiveness analysisAllo-HSCT outcomesDonor allo-HSCTBuprenorphine Knowledge and Attitudes Among Sickle Cell Disease Providers
Nguemeni Tiako M, Afranie-Sakyi J, Van Doren L, Vasquez K, Calhoun C. Buprenorphine Knowledge and Attitudes Among Sickle Cell Disease Providers. Blood 2024, 144: 2442-2442. DOI: 10.1182/blood-2024-206368.Peer-Reviewed Original ResearchSickle cell diseaseChronic painOpioid analgesicsSide effectsX-waiverPain managementAdequate analgesiaRespiratory depressionTraditional opioidsOff-labelSickle cell disease providerBuprenorphine formulationsImproving provider knowledgeFDA approvalSurvey of providersRisk of respiratory depressionCross-sectional surveyEffective opioid analgesicMedical education opportunitiesOpioid-induced hyperalgesiaSickle cell disease patientsCompared to other opioidsMorphine milligram equivalentsOpioid side effectsAbuse-deterrent technologyBuprenorphine & Sickle Cell: How Pediatric and Adult Providers Differ in Prescribing Habits and Evolving Pain Management Styles
Afranie-Sakyi J, Tiako M, Vasquez K, Van Doren L, Calhoun C. Buprenorphine & Sickle Cell: How Pediatric and Adult Providers Differ in Prescribing Habits and Evolving Pain Management Styles. Blood 2024, 144: 3628. DOI: 10.1182/blood-2024-194039.Peer-Reviewed Original ResearchSickle cell disease providerSCD-related painSickle cell diseaseAdult providersOpioid use disorderPrescribing buprenorphineX-waiverOpioid agonistsPain managementChronic painPrescribing habitsPediatric providersInitiate buprenorphineAdvanced practice providersSCD agesHigh volume of patientsPain management guidelinesSide effectsOptimal pain managementDose-dependent adverse effectsDecreased quality of lifeCross-sectional studyPartial opioid agonistQuality of lifeChronic hemolytic anemiaImplementation of American Society of Hematology (ASH) Neuro-Related Guidelines at a Sickle Cell Center: How Are We Doing?
Afranie-Sakyi J, Karimi M, Bozzo J, Cole J, Van Doren L, Calhoun C. Implementation of American Society of Hematology (ASH) Neuro-Related Guidelines at a Sickle Cell Center: How Are We Doing? Blood 2024, 144: 5009-5009. DOI: 10.1182/blood-2024-201816.Peer-Reviewed Original ResearchYale New Haven Health SystemHistory of strokeCognitive screeningGuideline publicationHealth systemSilent cerebral infarctionCognitive disordersImplementation ratePredictors of screeningSickle cell diseaseRates of screeningMood disordersAmerican Society of HematologyPrevalence of cognitive disordersDetect silent cerebral infarctsDevelopment of interventionsCognitive impairmentManual chart reviewICD-10 diagnosisEmergency room visitsDiagnosis of sickle cell diseaseSickle Cell CenterAmerican Society of Hematology guidelinesOutpatient encountersMRI screeningScreening for Cognitive Impairment and Depression in Sickle Cell Disease: How Are We Doing?
Afranie-Sakyi J, Karimi M, Bozzo J, Cole J, Van Doren L, Calhoun C. Screening for Cognitive Impairment and Depression in Sickle Cell Disease: How Are We Doing? Blood 2024, 144: 2249-2249. DOI: 10.1182/blood-2024-211906.Peer-Reviewed Original ResearchPatient Health QuestionnaireCognitive screeningAmerican Society of HematologyPsychiatric disordersSickle cell diseaseMood screeningMood disordersCognitive disordersDisorder screeningYale New Haven Health SystemPredictors of screeningDisease-modifying therapiesICD-10 diagnosisManual chart reviewImplementation of recommendationsEmergency room visitsDiagnosis of sickle cell diseaseHistory of strokeCell diseaseScreening ratesAnxious symptomsHealthcare teamPromote screeningNeuropsychological testsCognitive domainsPerspectives of Adolescents and Young Adults With Sickle Cell Disease and Clinicians on Improving Transition Readiness With a Video Game Intervention
Aronson P, Nolan S, Schaeffer P, Hieftje K, Ponce K, Calhoun C. Perspectives of Adolescents and Young Adults With Sickle Cell Disease and Clinicians on Improving Transition Readiness With a Video Game Intervention. Journal Of Pediatric Hematology/Oncology 2024, 46: e147-e155. PMID: 38237001, DOI: 10.1097/mph.0000000000002810.Peer-Reviewed Original ResearchConceptsVideo game interventionPediatric to adult careOptimize self-efficacyGame interventionPatient engagementSelf-efficacyAdult careIdentified 4 main themesMedical decisionsImprove transition readinessYoung adultsExperiences of cliniciansQuaternary-care hospitalSickle cell diseaseData saturationTransition readinessMultilevel determinantsSemistructured interviewsClinician experienceHome managementCareInductive analysisCell diseaseDecision-makingIntervention
2023
Trainees' Perspectives on Components of Sickle Cell Specific Education
Van Doren L, Feder K, Calhoun C, Carroll C, Prince E. Trainees' Perspectives on Components of Sickle Cell Specific Education. Blood 2023, 142: 791. DOI: 10.1182/blood-2023-180303.Peer-Reviewed Original ResearchSickle cell disease educationPrevalence of sickle cell diseaseSpecific educationExposure to patientsFocus groupsTrainees' perspectivesSickle cell diseaseSurvey developmentFocus group guideLack of clinician knowledgeCare of personsFocus group transcriptsEvidence-based practiceMedically complex diseasesEvidenced-based guidelinesSense of masterySickle cell disease programBackground Sickle cell diseaseIncreasing trainee knowledgeSpecific curriculumComplex diseasesTime-sensitive needsDifficulty caringQualitative research studySex-matched personsPerspectives of Adolescents and Young Adults with Sickle Cell Disease and Clinicians on Improving Transition Readiness and a Videogame Intervention
Aronson P, Nolan S, Schaeffer P, Hieftje K, Ponce K, Calhoun C. Perspectives of Adolescents and Young Adults with Sickle Cell Disease and Clinicians on Improving Transition Readiness and a Videogame Intervention. Blood 2023, 142: 5116. DOI: 10.1182/blood-2023-173310.Peer-Reviewed Original ResearchAdult careSickle cell diseaseTransition readinessPatient engagementClinician experienceVideogame interventionCell diseaseMedical decisionsYoung adultsDisease-specific knowledgeQuaternary care hospitalYoung SCD patientsSuccessful home managementHigh rateParents/caregiversPain crisisCare hospitalPatient factorsSuccessful disease managementHealthcare utilizationSCD patientsClinical manifestationsEmergency departmentProvider judgmentClinician's perspectiveStandardized Clinical Pathways Improve Management of Vaso-Occlusive Episodes in the Pediatric Emergency Department
Forward J, Thomas D, O'Malley S, Berkwitt A, Calhoun C, Krishnamurti L, Pashankar F. Standardized Clinical Pathways Improve Management of Vaso-Occlusive Episodes in the Pediatric Emergency Department. Blood 2023, 142: 2315. DOI: 10.1182/blood-2023-181285.Peer-Reviewed Original ResearchVaso-occlusive episodesSickle cell diseasePediatric emergency departmentMinutes of arrivalPain managementEmergency departmentClinical pathwayIntranasal fentanylYears post implementationHydromorphone PCAPain medicationPediatric patientsJune 30 thPain medication administrationVaso-occlusive painPercent of patientsPercentage of patientsQuality improvement projectOutcome one yearElectronic medical recordsPost implementationHealth care systemFirst analgesicED visitsED encountersAllotransplantation and Gene Therapy Equity for Children with Sickle Cell Disease: Distributional Cost-Effectiveness of Allotransplantation Vs Gene Therapy Vs Standard-of-Care in Pediatric Patients with Sickle Cell Disease in the United States
Goshua G, Ito S, Chetlapalli K, Potnis K, Calhoun C, Krishnamurti L, Krumholz H, Pandya A. Allotransplantation and Gene Therapy Equity for Children with Sickle Cell Disease: Distributional Cost-Effectiveness of Allotransplantation Vs Gene Therapy Vs Standard-of-Care in Pediatric Patients with Sickle Cell Disease in the United States. Blood 2023, 142: 490. DOI: 10.1182/blood-2023-191072.Peer-Reviewed Original ResearchSickle cell diseaseIncremental cost-effectiveness ratioDistributional cost-effectiveness analysisPediatric patientsCell diseaseCost-effectiveness analysisDisease severityHealth resource utilization dataPediatric Health Information SystemGene therapyJustifiable treatment optionTransplant-related mortalityVaso-occlusive crisisExpert clinical experienceMarrow Transplant ResearchSubstantial mortality riskVisual analog scaleQuality-adjusted life expectancyConcomitant riskCost-effectiveness ratioResource utilization dataCost-effectiveness frontierHost diseaseMaximum patientsOpioid therapyExamining Mental Health, Education, Employment, and Pain in Sickle Cell Disease
Harris K, Preiss L, Varughese T, Bauer A, Calhoun C, Treadwell M, Masese R, Hankins J, Hussain F, Glassberg J, Melvin C, Gibson R, King A. Examining Mental Health, Education, Employment, and Pain in Sickle Cell Disease. JAMA Network Open 2023, 6: e2314070. PMID: 37200033, PMCID: PMC10196879, DOI: 10.1001/jamanetworkopen.2023.14070.Peer-Reviewed Original ResearchConceptsSickle cell diseasePain frequencyMedical record abstractionPain severityMental healthHydroxyurea usePain medicationRecord abstractionCell diseaseMAIN OUTCOMEAdult Sickle Cell QualityElectronic medical record abstractionSickle Cell Disease Implementation ConsortiumDaily pain medicationHigher pain frequencySeverity of painRegular blood transfusionsMental health diagnosesPatient registry dataCross-sectional analysisAssociation of educationEmployment statusPain episodesPain reductionPain scoresHealth literacy correlates with abbreviated full‐scale IQ in adolescent and young adults with sickle cell disease
Bhatt N, Calhoun C, Longoria J, Nwosu C, Howell K, Varughese T, Kang G, Jacola L, Hankins J, King A. Health literacy correlates with abbreviated full‐scale IQ in adolescent and young adults with sickle cell disease. Pediatric Blood & Cancer 2023, 70: e30281. PMID: 36861391, PMCID: PMC10425156, DOI: 10.1002/pbc.30281.Peer-Reviewed Original ResearchConceptsSickle cell diseaseFull-scale intelligence quotientAdequate health literacyHealth literacyCell diseaseNeurocognitive deficitsInadequate health literacyLow health literacyCross-sectional studyDevelopment of interventionsChronic conditionsAdult careHigh school educationSign toolHealth outcomesYounger ageLogistic regressionAge 15Young adultsYoung adulthoodHealthcare decisionsAYAsIntelligence quotientWechsler Abbreviated ScaleDisease
2022
Decreased Resiliency Associated with Increased Hospitalizations for Children with Sickle Cell Disease (S535)
Zavadil J, Carpenter B, Calhoun C. Decreased Resiliency Associated with Increased Hospitalizations for Children with Sickle Cell Disease (S535). Journal Of Pain And Symptom Management 2022, 63: 924-925. DOI: 10.1016/j.jpainsymman.2022.02.158.Peer-Reviewed Original ResearchSickle cell disease managementCD-RISCParental resilienceFrequency of hospitalizationSources of stressPSS-10Resilience of childrenConnor-Davidson Resilience ScaleSickle cell diseasePSS-10 scoreChildren's resiliencePerceived Stress ScaleCD-RISC scoreEmergency room visitsHistory of strokeDepression ScalePsychosocial factorsChild healthChronic illnessPerceived stressStress ScaleResilience scoresCOVID pandemicResilience ScaleImprove resilience
2021
Transition for Adolescents and Young Adults With Sickle Cell Disease in a US Midwest Urban Center: A Multilevel Perspective on Barriers, Facilitators, and Future Directions
Calhoun C, Luo L, Baumann AA, Bauer A, Shen E, McKay V, Hooley C, James A, King AA. Transition for Adolescents and Young Adults With Sickle Cell Disease in a US Midwest Urban Center: A Multilevel Perspective on Barriers, Facilitators, and Future Directions. Journal Of Pediatric Hematology/Oncology 2021, 44: e872-e880. PMID: 35731941, PMCID: PMC9218344, DOI: 10.1097/mph.0000000000002322.Peer-Reviewed Original ResearchConceptsSickle cell diseaseAdult careCell diseaseSCD providersInherited red blood cell disorderIntervention characteristicsYoung adultsDomains of CFIRRed blood cell disordersEmergency department providersBlood cell disordersPain controlImplementation science frameworkLarge hospital systemHigh morbidityAdult clinicEmergency departmentSpecialized careCell disordersMultilevel barriersPatient experienceOuter settingInner settingHealth disparitiesConsolidated FrameworkEngaging 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
Addressing Recruitment Challenges in the Engage-HU Trial in Young Children with Sickle Cell Disease
Hood A, Strong H, Nwankwo C, Johnson Y, Mara C, Shook L, Brinkman W, Real F, Klein M, King A, Calhoun C, Smith-Whitley K, Creary S, Britto M, Saving K, Piccone C, Raphael J, Volanakis E, Hildenbrand A, Reader S, Rana S, Neumayr L, Yates A, Badawy S, Thompson A, Sobota A, Meier E, Quinn C, Crosby L. Addressing Recruitment Challenges in the Engage-HU Trial in Young Children with Sickle Cell Disease. Blood 2020, 136: 26-27. DOI: 10.1182/blood-2020-141471.Peer-Reviewed Original ResearchSickle cell diseaseSite principal investigatorsNational HeartCell diseaseCaregivers' perceptionsBluebird BioAdvisory CommitteeYoung childrenPrincipal investigatorBlood Institute guidelinesPatient-centered outcomesChild health outcomesRandomized control trialStepped-wedge designMonths of ageCurrent equity holderMistrust of researchStudy's principal investigatorNeurologic morbidityPrimary endpointTreat principleBlood InstituteFuture trialsIntervention trialsSCD populationIntentional and unintentional nonadherence to hydroxyurea among people with sickle cell disease: a qualitative study
Hodges JR, Phillips SM, Norell S, Nwosu C, Khan H, Luo L, Badawy SM, King A, Tanabe P, Treadwell M, Rojas Smith L, Calhoun C, Hankins JS, Porter J. Intentional and unintentional nonadherence to hydroxyurea among people with sickle cell disease: a qualitative study. Blood Advances 2020, 4: 4463-4473. PMID: 32941646, PMCID: PMC7509876, DOI: 10.1182/bloodadvances.2020001701.Peer-Reviewed Original ResearchConceptsSickle cell diseaseSickle Cell Disease Implementation ConsortiumAdherence barriersCell diseaseMedication adherence barriersHealth care providersNonadherence factorsHydroxyurea therapyPatient adherenceUnintentional nonadherenceSCD populationCare providersEfficacious treatmentPatient choiceClinical discussionAge 15NonadherenceHydroxyureaDiseaseAdherenceQualitative studyParticipantsSemi-structured interviewsMedicationsRegimensIntegration of Mobile Health Into Sickle Cell Disease Care to Increase Hydroxyurea Utilization: Protocol for an Efficacy and Implementation Study
Hankins JS, Shah N, DiMartino L, Brambilla D, Fernandez ME, Gibson RW, Gordeuk VR, Lottenberg R, Kutlar A, Melvin C, Simon J, Wun T, Treadwell M, Calhoun C, Baumann A, Potter MB, Klesges L, Bosworth H, . Integration of Mobile Health Into Sickle Cell Disease Care to Increase Hydroxyurea Utilization: Protocol for an Efficacy and Implementation Study. JMIR Research Protocols 2020, 9: e16319. PMID: 32442144, PMCID: PMC7388044, DOI: 10.2196/16319.Peer-Reviewed Original ResearchSickle Cell Disease Implementation ConsortiumSickle cell diseaseINTERNATIONAL REGISTERED REPORT IDENTIFIERMHealth interventionsDisease complicationsSickle cell disease careAcute disease complicationsImplementation-effectiveness studyNational Health LungHealth-related qualityEvidence-based guidelinesProportion of daysHealth appsHealth LungHydroxyurea useHydroxyurea therapyAppropriate prescribingMedication adherenceDisease careChronic diseasesMobile health appsCell diseasePrescribing behaviorHealth literacyPatientsPerceptions 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
2019
Evaluation of Factors Influencing Health Literacy in Adolescents and Adults with Sickle Cell Disease
Bhatt N, Calhoun C, Hodges J, Nwosu C, Kang G, King A, Zhao X, Hankins J. Evaluation of Factors Influencing Health Literacy in Adolescents and Adults with Sickle Cell Disease. Blood 2019, 134: 2110. DOI: 10.1182/blood-2019-130755.Peer-Reviewed Original ResearchSt. Jude Children's Research HospitalLimited health literacySickle cell diseaseHealth literacy levelsNewest Vital SignAdequate health literacyResearch HospitalFurther clinical developmentHealth literacyNVS scoresCell diseaseSevere genotypeClinical developmentHealth outcomesSt. Louis Children's HospitalLow health literacy levelsYoung adultsDisease-modifying therapiesHealth literacy assessmentHealth literacy scoresLow health literacyCross-sectional studyAppropriate health decisionsCare of adolescentsAdults ages 15