2023
Parental perspective on the risk of infertility and fertility preservation options for children and adolescents with sickle cell disease considering hematopoietic stem cell transplantation
Sinha C, Meacham L, Bakshi N, Ross D, Krishnamurti L. Parental perspective on the risk of infertility and fertility preservation options for children and adolescents with sickle cell disease considering hematopoietic stem cell transplantation. Pediatric Blood & Cancer 2023, 70: e30276. PMID: 37051746, PMCID: PMC10544372, DOI: 10.1002/pbc.30276.Peer-Reviewed Original ResearchConceptsHematopoietic stem cell transplantationRisk of infertilitySickle cell diseaseStem cell transplantationFertility preservationCell transplantationCell diseaseMajor long-term complicationPrimary caregiversIdentical related donorsDisease-free survivalFertility preservation optionsFertility preservation proceduresLong-term complicationsHuman leukocyte antigenConditioning regimenHost diseaseRelated donorsLeukocyte antigenPreservation optionsHCT physiciansSurvival rateAvailable HLAEleven participantsInfertility
2022
Decision-making about gene therapy in transfusion dependent thalassemia
Quarmyne M, Ross D, Sinha C, Bakshi N, Boudreaux J, Krishnamurti L. Decision-making about gene therapy in transfusion dependent thalassemia. BMC Pediatrics 2022, 22: 536. PMID: 36085025, PMCID: PMC9461218, DOI: 10.1186/s12887-022-03598-3.Peer-Reviewed Original ResearchConceptsTransfusion-dependent thalassemiaPatient/family knowledgeDependent thalassemiaTransfusion independenceTreatment optionsStudy participantsGene therapyFamily knowledgeElimination of transfusionsFrequency of transfusionMorbidity/mortalityStem cell transplantationLong-term outcomesPreferred treatment modalityPromising treatment optionBackgroundHematopoietic stem cell transplantationPatients/familiesMethodsParents of childrenCurative intentTransfusion reductionHost diseaseDonor HSCTParents of childrenCell transplantationMean age
2021
Safety of intravenous arginine therapy in children with sickle cell disease hospitalized for vaso‐occlusive pain: A randomized placebo‐controlled trial in progress
Reyes L, Figueroa J, Leake D, Khemani K, Kumari P, Bakshi N, Lane P, Dampier C, Morris C. Safety of intravenous arginine therapy in children with sickle cell disease hospitalized for vaso‐occlusive pain: A randomized placebo‐controlled trial in progress. American Journal Of Hematology 2021, 97: e21-e24. PMID: 34724240, PMCID: PMC8722015, DOI: 10.1002/ajh.26396.Peer-Reviewed Original Research
2020
Educational needs of patients and caregivers living with sickle cell disease results in development of web‐based patient decision aid
Ross D, Sinha C, Bakshi N, Krishnamurti L. Educational needs of patients and caregivers living with sickle cell disease results in development of web‐based patient decision aid. Journal Of Advanced Nursing 2020, 77: 1432-1441. PMID: 33277763, DOI: 10.1111/jan.14704.Peer-Reviewed Original ResearchConceptsSickle cell diseasePatients/caregiversWeb-based patient decision aidQuality of lifeTreatment optionsCell diseasePatient decision aidWeb-based decision aidPotential treatment optionHealthcare provider educationInitial needs assessmentDecision aidAdult patientsAvailable therapiesProvider educationSemi-structured qualitative interviewsPatientsHealthcare providersWay patientsDecisional needsInternet-based searchDiseaseCaregiversFurther recruitmentNeeds assessmentWhat is the future of patient-reported outcomes in sickle-cell disease?
Singh S, Bakshi N, Mahajan P, Morris C. What is the future of patient-reported outcomes in sickle-cell disease? Expert Review Of Hematology 2020, 13: 1165-1173. PMID: 33034214, PMCID: PMC7722233, DOI: 10.1080/17474086.2020.1830370.Peer-Reviewed Reviews, Practice Guidelines, Standards, and Consensus StatementsMeSH KeywordsAdultAnemia, Sickle CellChildClinical ProtocolsClinical Trials as TopicData AccuracyData CollectionDatabases, FactualDecision Making, SharedHumansInformation SystemsNational Institutes of Health (U.S.)Pain MeasurementPatient Reported Outcome MeasuresPatient-Centered CareQuality of LifeSelf ReportSeverity of Illness IndexUnited StatesConceptsSickle cell diseaseClinical trialsEnd-organ damagePatient-reported outcomesSevere pain episodesPatient-centered approachPRO toolsPain episodesSecondary outcomesChronic diseasesImproved outcomesCell diseasePRO measuresClinical practiceDisease severityClinical useDiseaseOutcomesAbnormal polymerizationTrialsSeverityHemoglobinPrimary caregiver decision‐making in hematopoietic cell transplantation and gene therapy for sickle cell disease
Sinha C, Bakshi N, Ross D, Loewenstein G, Krishnamurti L. Primary caregiver decision‐making in hematopoietic cell transplantation and gene therapy for sickle cell disease. Pediatric Blood & Cancer 2020, 68: e28749-e28749. PMID: 33034129, PMCID: PMC8246626, DOI: 10.1002/pbc.28749.Peer-Reviewed Original ResearchConceptsHematopoietic cell transplantationSickle cell diseasePrimary caregiversSCD complicationsCell transplantationCell diseaseDiminished qualityAutologous hematopoietic progenitor cellsPrimary caregiver reportMajor medical decisionsGene therapyCurative optionSevere complicationsHematopoietic progenitor cellsClinical trialsAcceptable treatmentRecent complicationsComplicationsCaregiver reportsCaregiversProgenitor cellsNormal lifeTransplantationTherapyMedical decisionsMicrobiology and radiographic features of osteomyelitis in children and adolescents with sickle cell disease
Kao CM, Yee ME, Maillis A, Lai K, Bakshi N, Rostad BS, Jerris RC, Lane PA, Yildirim I. Microbiology and radiographic features of osteomyelitis in children and adolescents with sickle cell disease. Pediatric Blood & Cancer 2020, 67: e28517. PMID: 32710705, PMCID: PMC8369475, DOI: 10.1002/pbc.28517.Peer-Reviewed Original ResearchConceptsSickle cell diseaseMethicillin-susceptible Staphylococcus aureusMagnetic resonance imagingAntibiotic treatmentOperative culturesCell diseaseLarge tertiary pediatric centerPrescribed antibiotic treatmentTertiary pediatric centerCulture-positive casesKey presenting symptomsChildren ages 6Bone painMicrobiologic etiologyPresenting symptomPediatric centersBone infarctsMedical chartsMicrobiologic findingsRadiographic featuresImaging featuresOsteomyelitisProbable osteomyelitisDiagnostic codingTissue debridementInfluenza vaccine effectiveness and disease burden in children and adolescents with sickle cell disease: 2012‐2017
Kao CM, Lai K, McAteer JM, Elmontser M, Quincer EM, Yee MEM, Tippet A, Jerris RC, Lane PA, Anderson EJ, Bakshi N, Yildirim I. Influenza vaccine effectiveness and disease burden in children and adolescents with sickle cell disease: 2012‐2017. Pediatric Blood & Cancer 2020, 67: e28358. PMID: 32469138, PMCID: PMC8221251, DOI: 10.1002/pbc.28358.Peer-Reviewed Original ResearchConceptsInfluenza vaccine effectivenessSickle cell diseaseVaccine effectivenessYears of ageInfluenza infectionOdds ratioCell diseaseLaboratory-confirmed influenza infectionSeasonal influenza vaccine effectivenessTest-negative case-control study designAdjusted vaccine effectivenessAdjusted VE estimatesInfluenza-positive casesOverall vaccine effectivenessAcute chest syndromeBurden of influenzaPatients 6 monthsMulticenter prospective studyTest-negative controlsAnnual influenza vaccineCase-control study designConfidence intervalsLogistic regression modelsChest syndromeInfluenza seasonAssessment of Patient and Caregiver Attitudes and Approaches to Decision-Making Regarding Bone Marrow Transplant for Sickle Cell Disease
Bakshi N, Katoch D, Sinha C, Ross D, Quarmyne M, Loewenstein G, Krishnamurti L. Assessment of Patient and Caregiver Attitudes and Approaches to Decision-Making Regarding Bone Marrow Transplant for Sickle Cell Disease. JAMA Network Open 2020, 3: e206742. PMID: 32469414, PMCID: PMC7260617, DOI: 10.1001/jamanetworkopen.2020.6742.Peer-Reviewed Original ResearchConceptsBone marrow transplantCaregivers of patientsSickle cell diseasePatient decision aidMarrow transplantMedian ageCurative treatmentCell diseaseGroup 2Group 1Caregiver attitudesNovel disease-modifying therapiesDisease-modifying therapiesSickle cell clinicAssessment of patientsFuture prospective studiesRandomized clinical trialsParent trialProspective studyTreatment optionsClinical trialsNeeds assessment phaseMAIN OUTCOMECell clinicPatients
2019
Comparative Effectiveness of a Web-Based Patient Decision Aid for Therapeutic Options for Sickle Cell Disease: Randomized Controlled Trial
Krishnamurti L, Ross D, Sinha C, Leong T, Bakshi N, Mittal N, Veludhandi D, Pham A, Taneja A, Gupta K, Nwanze J, Matthews A, Joshi S, Olivieri V, Arjunan S, Okonkwo I, Lukombo I, Lane P, Bakshi N, Loewenstein G. Comparative Effectiveness of a Web-Based Patient Decision Aid for Therapeutic Options for Sickle Cell Disease: Randomized Controlled Trial. Journal Of Medical Internet Research 2019, 21: e14462. PMID: 31799940, PMCID: PMC6934048, DOI: 10.2196/14462.Peer-Reviewed Original ResearchConceptsRandomized clinical trialsPatient decision aidSickle cell diseaseWeb-based patient decision aidClinical trialsHealth care providersCell diseaseDecisional conflictPatient knowledgeCare providersDecision aid armStandard care armOttawa Decision Support FrameworkChronic blood transfusionsDisease-modifying therapiesBone marrow transplantationDecision aidCare armDecision aid prototypeClinical characteristicsBlood transfusionControlled TrialsPediatric patientsMarrow transplantationTherapeutic optionsManagement of Chronic Pain in Adults Living With Sickle Cell Disease in the Era of the Opioid Epidemic
Sinha C, Bakshi N, Ross D, Krishnamurti L. Management of Chronic Pain in Adults Living With Sickle Cell Disease in the Era of the Opioid Epidemic. JAMA Network Open 2019, 2: e194410. PMID: 31125105, PMCID: PMC6632133, DOI: 10.1001/jamanetworkopen.2019.4410.Peer-Reviewed Original ResearchConceptsSickle cell diseaseOpioid epidemicOpioid usePain managementChronic painAlternative therapiesCell diseaseAfrican American race/ethnicityDisease controlVaso-occlusive painPain medication useChronic pain managementSickle cell clinicCurrent opioid epidemicRace/ethnicityOpioid dosingOpioid dosageOpioid prescriptionsAdult patientsMedian ageMedication usePersistent painComprehensive careMAIN OUTCOMEPainBone marrow transplantation for adolescents and young adults with sickle cell disease: Results of a prospective multicenter pilot study
Krishnamurti L, Neuberg D, Sullivan K, Kamani N, Abraham A, Campigotto F, Zhang W, Dahdoul T, De Castro L, Parikh S, Bakshi N, Haight A, Hassell K, Loving R, Rosenthal J, Smith S, Smith W, Spearman M, Stevenson K, Wu C, Wiedl C, Waller E, Walters M. Bone marrow transplantation for adolescents and young adults with sickle cell disease: Results of a prospective multicenter pilot study. American Journal Of Hematology 2019, 94: 446-454. PMID: 30637784, PMCID: PMC6542639, DOI: 10.1002/ajh.25401.Peer-Reviewed Original ResearchConceptsSevere sickle cell diseaseBone marrow transplantationEvent-free survivalSickle cell diseaseMarrow transplantationCell diseaseElevated tricuspid regurgitant jet velocityRegular red blood cell transfusionsSevere SCDDonor bone marrow transplantationOne-year overall survivalSecond bone marrow transplantationTricuspid regurgitant jet velocityRed blood cell transfusionProspective multicenter pilot studyDeveloped chronic GVHDHost disease (GVHD) prophylaxisStable donor chimerismAcute chest syndromeSecondary graft failureBlood cell transfusionHealth-related qualityPhysical function domainProspective clinical trialsRegurgitant jet velocity
2018
A Qualitative Study of Chronic Pain and Self-Management in Adults with Sickle Cell Disease
Matthie N, Ross D, Sinha C, Khemani K, Bakshi N, Krishnamurti L. A Qualitative Study of Chronic Pain and Self-Management in Adults with Sickle Cell Disease. Journal Of The National Medical Association 2018, 111: 158-168. PMID: 30266214, PMCID: PMC6433553, DOI: 10.1016/j.jnma.2018.08.001.Peer-Reviewed Original ResearchConceptsSickle cell diseaseChronic pain managementChronic painChronic pain experiencePain managementCell diseasePain experienceChronic SCD painGreater QoL impairmentVaso-occlusive painYears of ageSelf-management strategiesSickle cell anemiaSubgroup of adultsSCD painAcute painPersistent painSubstantial morbidityHealthcare utilizationImpaired qualityQoL impairmentPainSCD managementCell anemiaQualitative studyFrom trust to skepticism: An in-depth analysis across age groups of adults with sickle cell disease on their perspectives regarding hydroxyurea
Sinha C, Bakshi N, Ross D, Krishnamurti L. From trust to skepticism: An in-depth analysis across age groups of adults with sickle cell disease on their perspectives regarding hydroxyurea. PLOS ONE 2018, 13: e0199375. PMID: 29949647, PMCID: PMC6021071, DOI: 10.1371/journal.pone.0199375.Peer-Reviewed Original ResearchConceptsSickle cell diseaseGroup 1 participantsGroup 2 participantsCell diseaseSide effectsAdult SCD patientsPatient-related factorsPotential side effectsAdult patientsSCD patientsHU usePatients' attitudesAge 31Age groupsAge 18PatientsYoung adultsEfficacySignificant differencesAdultsEffective alternativeDiseaseRiskParticipantsQualitative interviews
2017
Proponent or collaborative: Physician perspectives and approaches to disease modifying therapies in sickle cell disease
Bakshi N, Sinha C, Ross D, Khemani K, Loewenstein G, Krishnamurti L. Proponent or collaborative: Physician perspectives and approaches to disease modifying therapies in sickle cell disease. PLOS ONE 2017, 12: e0178413. PMID: 28727801, PMCID: PMC5518995, DOI: 10.1371/journal.pone.0178413.Peer-Reviewed Original ResearchConceptsSickle cell diseaseChronic blood transfusionsBone marrow transplantationDisease-modifying therapiesTreatment-related decisionsTreatment optionsCell diseasePhysician perspectivesAvailable disease-modifying therapiesLong-term adverse effectsPhysician-related factorsAvailable treatment optionsDisease-related factorsPossible treatment optionsPatients/familiesInherited blood disorderBlood transfusionMarrow transplantationPhysician interviewsPatient burdenPhysicians' perceptionsPatient's perspectivePhysicians' approachPatient engagementTreatment plan