2024
Perspectives 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
Perspectives 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 perspectiveAllotransplantation 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
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 Framework
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 15The Relationship between Mental Health, Educational Attainment, Employment Outcomes, and Pain in Sickle Cell Disease
Harris K, Varughese T, Bauer A, Howdeshell S, Calhoun C, Abel R, King A. The Relationship between Mental Health, Educational Attainment, Employment Outcomes, and Pain in Sickle Cell Disease. Blood 2019, 134: 419. DOI: 10.1182/blood-2019-129874.Peer-Reviewed Original ResearchLength of painSickle cell diseaseSeverity of painHistory of depressionSevere painPain outcomesAnnual household incomePain crisisPain frequencyCell diseaseSocioeconomic statusMultivariate analysisSeverity of SCDSignificant associationEmployment statusMental healthHigher pain frequencyHospital admission frequencyEnd-organ damageFrequency of painVariety of complicationsPatients' educational attainmentCross-sectional studyOnly significant associationPatient survey dataImplementation of an educational intervention to optimize self‐management and transition readiness in young adults with sickle cell disease
Calhoun CL, Abel RA, Pham HA, Thompson S, King AA. Implementation of an educational intervention to optimize self‐management and transition readiness in young adults with sickle cell disease. Pediatric Blood & Cancer 2019, 66: e27722. PMID: 30907500, PMCID: PMC6529244, DOI: 10.1002/pbc.27722.Peer-Reviewed Original ResearchConceptsSickle cell diseaseTransition readinessEducational handoutAdult careCell diseaseYoung adultsSingle-center studyPeriod of morbiditySelf-management skillsType of interventionPediatric settingStudy coordinatorsHealthcare skillsEducational interventionMultidisciplinary approachBaselineCarePatientsInterventionPostinterventionAreas of deficitDiseaseAdolescentsRegression modelsMost improvement
2018
Understanding Health Knowledge Gaps to Optimize Transitions of Care for Young Adults with Sickle Cell Disease
Calhoun C, Luo L, Baumann A, James A, King A. Understanding Health Knowledge Gaps to Optimize Transitions of Care for Young Adults with Sickle Cell Disease. Blood 2018, 132: 2274. DOI: 10.1182/blood-2018-99-113150.Peer-Reviewed Original ResearchSickle cell diseaseDisease-specific knowledgePatient-provider communicationAdult careYoung adultsOccupational settingsDisease complicationsCell diseaseHealth knowledgeEmergency department providersTransitions of careHealth knowledge gapsQuality of lifeUse of diseaseAfrican AmericansCommon genetic conditionYoung adult periodProphylactic penicillinPneumococcal vaccinationLarge hospital systemHealthcare utilizationSCD patientsHigh morbidityED providersTreatment options
2017
Current Healthcare Utilization Patterns and Most Common Reasons for Admission Amongst Patients with Sickle Cell Disease
Calhoun C, Keller M, Olsen M, King A. Current Healthcare Utilization Patterns and Most Common Reasons for Admission Amongst Patients with Sickle Cell Disease. Blood 2017, 130: 866. DOI: 10.1182/blood.v130.suppl_1.866.866.Peer-Reviewed Original ResearchSickle cell diseaseVaso-occlusive crisisSCD patientsState Inpatient DatabasesIndex hospitalizationRespiratory infectionsHealthcare utilizationSCD populationAge groupsAdult careCell diseaseCommon reasonHuman Research Protection OfficeICD-9-CM diagnosis codesICD-9-CM diagnosisUtilization Project State Inpatient DatabasesYoung adult age groupPrimary insurance typeVaso-occlusive episodesAnnual healthcare costsChronic lung diseaseHealthcare utilization patternsHospital resource useYears age groupHigher mortality risk
2016
Higher Prevalence of Hydroxyurea Use Is Associated with Lower Hospitalization Rate in a Population of Children with Sickle Cell Disease
Calhoun C, Colvin R, Verlekar A, Lassa-Claxton S, Cole F, Hulbert M. Higher Prevalence of Hydroxyurea Use Is Associated with Lower Hospitalization Rate in a Population of Children with Sickle Cell Disease. Blood 2016, 128: 315. DOI: 10.1182/blood.v128.22.315.315.Peer-Reviewed Original ResearchSt. Louis Children's HospitalSickle cell diseaseLower hospitalization ratesHematopoietic stem cell transplantPopulation of childrenStem cell transplantHospitalization ratesSevere genotypeCell diseaseGenotype groupsHydroxyurea useTotal hospitalizationsCell transplantOutpatient encountersVaso-occlusive pain episodesHU treatmentStudy periodImpact of hydroxyureaMore outpatient encountersReduced hospitalization ratesHigher hospitalization ratesRate of hospitalizationICD-9 codesUnrelated medical conditionsGenotypes of SCDImplementation of an Educational Intervention to Optimize Self-Management and Transition Readiness in Adolescents with Sickle Cell Disease
Calhoun C, Abel R, Pham H, Thompson S, King A. Implementation of an Educational Intervention to Optimize Self-Management and Transition Readiness in Adolescents with Sickle Cell Disease. Blood 2016, 128: 3536. DOI: 10.1182/blood.v128.22.3536.3536.Peer-Reviewed Original ResearchSickle cell diseaseEducational handoutAdult careCell diseaseTransition readinessSilent cerebral infarctsEnd-organ damageSubsequent clinic visitsEducational interventionHistory of strokeMajority of patientsPediatric hematology clinicYear oldsFormal transition programAge group 13Institutional review boardUniversity Institutional Review BoardCerebral infarctsChart abstractionClinic visitsStandard careIndependent livingHematology clinicMedical managementOrgan damage