2023
A cognitive–behavioral digital health intervention for sickle cell disease pain in adolescents: a randomized, controlled, multicenter trial
Palermo T, Lalloo C, Zhou C, Dampier C, Zempsky W, Badawy S, Bakshi N, Ko Y, Nishat F, Stinson J. A cognitive–behavioral digital health intervention for sickle cell disease pain in adolescents: a randomized, controlled, multicenter trial. Pain 2023, 165: 164-176. PMID: 37733479, PMCID: PMC10723646, DOI: 10.1097/j.pain.0000000000003009.Peer-Reviewed Original ResearchMeSH KeywordsAdolescentAnemia, Sickle CellChronic PainCognitionCognitive Behavioral TherapyFemaleHumansMaleConceptsSickle cell diseaseEducation controlSickle Cell Disease PainEvidence-based cognitive behavioral therapySickle cell painAverage pain intensitySignificant healthcare costsCognitive behavioral therapy programCognitive behavioral therapyDigital health interventionsPain daysSCD clinicSecondary outcomesCommon complicationDisease painMulticenter trialPain intensityPain interferenceChronic painPain interventionsEffective implementation strategiesGlobal ImpressionCell diseasePsychosocial distressPainPatient-reported outcomes in children with sickle cell disease at presentation for an acute pain episode
Bakshi N, Liu Z, Gillespie S, Keesari R, Leake D, Khemani K, Kumari P, Rees C, Dampier C, Morris C. Patient-reported outcomes in children with sickle cell disease at presentation for an acute pain episode. Blood Advances 2023, 7: 5103-5107. PMID: 36322873, PMCID: PMC10477437, DOI: 10.1182/bloodadvances.2021006794.Peer-Reviewed Original ResearchSickle Cell Disease Treatment with Arginine Therapy (STArT): study protocol for a phase 3 randomized controlled trial
Rees C, Brousseau D, Cohen D, Villella A, Dampier C, Brown K, Campbell A, Chumpitazi C, Airewele G, Chang T, Denton C, Ellison A, Thompson A, Ahmad F, Bakshi N, Coleman K, Leibovich S, Leake D, Hatabah D, Wilkinson H, Robinson M, Casper T, Vichinsky E, Morris C. Sickle Cell Disease Treatment with Arginine Therapy (STArT): study protocol for a phase 3 randomized controlled trial. Trials 2023, 24: 538. PMID: 37587492, PMCID: PMC10433602, DOI: 10.1186/s13063-023-07538-z.Peer-Reviewed Original ResearchConceptsPediatric Emergency Care Applied Research NetworkSickle cell disease treatmentVaso-occlusive episodesSickle cell diseaseSTART trialArginine therapyIntravenous arginineLoading doseNormal saline three timesYoung adultsBlood Institute guidelinesParental opioid usePlacebo loading doseSubstantial illness burdenDisease-modifying therapiesPatient-reported outcomesDisease treatmentPhase 3Emergency medicine providersSaline three timesMulticenter research networkResearch NetworkIntravenous opioidsLast doseStudy drugParental 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
Multimodal phenotyping and correlates of pain following hematopoietic cell transplant in children with sickle cell disease
Bakshi N, Astles R, Chou E, Hurreh A, Sil S, Sinha C, Sanders K, Peddineni M, Gillespie S, Keesari R, Krishnamurti L. Multimodal phenotyping and correlates of pain following hematopoietic cell transplant in children with sickle cell disease. Pediatric Blood & Cancer 2022, 70: e30046-e30046. PMID: 36322607, PMCID: PMC9820671, DOI: 10.1002/pbc.30046.Peer-Reviewed Original ResearchMeSH KeywordsAdolescentAnemia, Sickle CellChildFemaleHematopoietic Stem Cell TransplantationHumansMalePainQuality of LifeTransplantation ConditioningConceptsHematopoietic cell transplantPatient-reported outcomesSickle cell diseaseYear post-HCTPost-HCTExperimental pain sensitivitySickle cell anemiaCell transplantPain thresholdPain sensitivityCell diseaseCorrelates of painPressure pain thresholdHealth-related qualityCold pain thresholdAssessment of painPsychological factorsUnderstanding of painEffect sizePain assessmentObservational studySevere genotypePainCell anemiaOptional substudiesAdherence to NHLBI guidelines for the emergent management of vaso‐occlusive episodes in children with sickle cell disease: A multicenter perspective
Rees C, Brousseau D, Ahmad F, Bennett J, Bhatt S, Bogie A, Brown K, Casper T, Chapman L, Chumpitazi C, Cohen D, Dampier C, Ellison A, Grasemann H, Hickey R, Hsu L, Lane P, Bakshi N, Leibovich S, Patil P, Powell E, Richards R, Sarnaik S, Weiner D, Morris C, Group and PECARN T. Adherence to NHLBI guidelines for the emergent management of vaso‐occlusive episodes in children with sickle cell disease: A multicenter perspective. American Journal Of Hematology 2022, 97: e412-e415. PMID: 36054566, PMCID: PMC9561082, DOI: 10.1002/ajh.26696.Peer-Reviewed Original ResearchCharacterizing User Engagement With a Digital Intervention for Pain Self-management Among Youth With Sickle Cell Disease and Their Caregivers: Subanalysis of a Randomized Controlled Trial
Lalloo C, Nishat F, Zempsky W, Bakshi N, Badawy S, Ko Y, Dampier C, Stinson J, Palermo T. Characterizing User Engagement With a Digital Intervention for Pain Self-management Among Youth With Sickle Cell Disease and Their Caregivers: Subanalysis of a Randomized Controlled Trial. Journal Of Medical Internet Research 2022, 24: e40096. PMID: 36040789, PMCID: PMC9472047, DOI: 10.2196/40096.Peer-Reviewed Original ResearchMeSH KeywordsAdolescentAnemia, Sickle CellCaregiversChildChronic PainFemaleHumansMalePain ManagementSelf-ManagementConceptsSickle cell diseaseCell diseaseSCD programmeCaregiver engagementHigher time burdenSevere acute painSevere pain interferenceSelf-management supportPain Self-ManagementSelf-management skillsProgram introductionDigital health programsSelf-management platformSCD clinicAcute painControlled TrialsChronic painPain interferenceSymptom historyEligible caregiversMost caregiversModerate positive associationICanCopeHealth programsPain
2021
Bloodstream Infections in Children With Sickle Cell Disease: 2010-2019.
Yee ME, Lai KW, Bakshi N, Grossman JK, Jaggi P, Mallis A, Wang YF, Jerris RC, Lane PA, Yildirim I. Bloodstream Infections in Children With Sickle Cell Disease: 2010-2019. Pediatrics 2021, 149 PMID: 34913059, PMCID: PMC8959248, DOI: 10.1542/peds.2021-051892.Peer-Reviewed Original ResearchMeSH KeywordsAdolescentAnemia, Sickle CellChildFemaleGenotypeGeorgiaHumansIncidenceMaleRetrospective StudiesRisk FactorsSepsisConceptsSickle cell diseaseBloodstream infectionsBlood culturesSickle cell anemia genotypesRetrospective cohort studyInvasive bacterial infectionsMultivariate logistic regressionConfidence intervalsAverage incidence rateSpectrum of pathogensAntibiotic prophylaxisEligible patientsFunctional aspleniaBSI episodesCohort studyChronic transfusionMedian ageAnnual incidenceOverall incidenceRisk factorsIncidence rateCell diseaseEmpirical treatmentBordetella holmesiiCommon pathogensSafety 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 ResearchIntraindividual pain variability and phenotypes of pain in sickle cell disease: a secondary analysis from the Pain in Sickle Cell Epidemiology Study
Bakshi N, Gillespie S, McClish D, McCracken C, Smith W, Krishnamurti L. Intraindividual pain variability and phenotypes of pain in sickle cell disease: a secondary analysis from the Pain in Sickle Cell Epidemiology Study. Pain 2021, 163: 1102-1113. PMID: 34538841, PMCID: PMC9100443, DOI: 10.1097/j.pain.0000000000002479.Peer-Reviewed Original ResearchMeSH KeywordsAnalgesics, OpioidAnemia, Sickle CellHumansOpioid-Related DisordersPainPhenotypeQuality of LifeConceptsSickle cell diseaseSickle Cell Epidemiology StudyOpioid useMean painPain variabilityPhysical functionPain intensityPain phenotypesPatient outcomesCell diseaseEpidemiology studiesHigher mean painLower mean painLow physical functionHealth-related qualityHealth care utilizationHigher physical functionProportion of daysSomatic symptom burdenSymptom burdenCare utilizationPainSecondary analysisSpearman rank correlationHigh temporal instabilityA pilot study of the acceptability, feasibility and safety of yoga for chronic pain in sickle cell disease
Bakshi N, Cooley A, Ross D, Hawkins L, Sullivan M, Astles R, Sinha C, Katoch D, Peddineni M, Gee B, Lane P, Krishnamurti L. A pilot study of the acceptability, feasibility and safety of yoga for chronic pain in sickle cell disease. Complementary Therapies In Medicine 2021, 59: 102722. PMID: 33892094, PMCID: PMC8284565, DOI: 10.1016/j.ctim.2021.102722.Peer-Reviewed Original ResearchMeSH KeywordsAdolescentAnemia, Sickle CellChronic PainFeasibility StudiesFemaleHumansPilot ProjectsYogaConceptsProportion of participantsSafety of yogaChronic painSickle cell diseaseYoga sessionsYoga programED visitsMedian ageCell diseasePart ARetention of participantsFeasibility endpointsPain characteristicsPart BPain diaryAdolescent patientsYoga interventionClinical trialsPatient participantsSafety outcomesPainPilot studyMost participantsStudy assessmentYoga
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 ResearchMeSH KeywordsAdultAnemia, Sickle CellCaregiversDecision Support TechniquesHumansInternetQuality of LifeConceptsSickle 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 decisionsThe burden of respiratory syncytial virus infections among children with sickle cell disease
Rostad CA, Maillis AN, Lai K, Bakshi N, Jerris RC, Lane PA, Yee ME, Yildirim I. The burden of respiratory syncytial virus infections among children with sickle cell disease. Pediatric Blood & Cancer 2020, 68: e28759. PMID: 33034160, PMCID: PMC8246443, DOI: 10.1002/pbc.28759.Peer-Reviewed Original ResearchConceptsRespiratory syncytial virusSickle cell diseaseRespiratory viral panelRSV-positive casesRSV infectionAnnual incidenceHospitalization ratesCell diseaseBurden of RSVPediatric lower respiratory tract infectionsLaboratory-confirmed RSV infectionRespiratory syncytial virus infectionRSV-related hospitalization rateLower respiratory tract infectionsRSV positive testRSV-negative childrenRSV-negative patientsAcute chest syndromeSyncytial virus infectionRespiratory tract infectionsAverage annual incidenceMultivariate logistic regressionConfidence intervalsCase-control studyOutcome of childrenMicrobiology 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 debridementAssessment 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 clinicPatientsPatient and family experience with chronic transfusion therapy for sickle cell disease: A qualitative study
Hawkins L, Sinha C, Ross D, Yee M, Quarmyne M, Krishnamurti L, Bakshi N. Patient and family experience with chronic transfusion therapy for sickle cell disease: A qualitative study. BMC Pediatrics 2020, 20: 172. PMID: 32305060, PMCID: PMC7165370, DOI: 10.1186/s12887-020-02078-w.Peer-Reviewed Original ResearchMeSH KeywordsAdolescentAnemia, Sickle CellBlood TransfusionChelation TherapyChildHumansParentsQualitative ResearchConceptsChronic transfusion therapySickle cell diseaseTransfusion therapyCell diseaseHealthcare providersPrevention of complicationsFamily experiencesStroke preventionVenous accessPatient knowledgeChildren 12Future studiesPatient participantsChelation therapySignificant patientFamily burdenSubstantial burdenPatient experiencePatientsSemi-structured interview formatTherapyComplicationsResultsFour themesBurdenInformed decision-making processChanges in Pain and Psychosocial Functioning and Transition to Chronic Pain in Pediatric Sickle Cell Disease
Sil S, Cohen L, Bakshi N, Watt A, Hathaway M, Abudulai F, Dampier C. Changes in Pain and Psychosocial Functioning and Transition to Chronic Pain in Pediatric Sickle Cell Disease. The Clinical Journal Of Pain 2020, 36: 463-471. PMID: 32287106, PMCID: PMC7233325, DOI: 10.1097/ajp.0000000000000827.Peer-Reviewed Original ResearchMeSH KeywordsAdolescentAnemia, Sickle CellChildChronic PainFollow-Up StudiesHumansPain MeasurementPsychosocial FunctioningQuality of LifeConceptsChronic SCD painSickle cell diseaseChronic painSCD painEpisodic painCell diseasePediatric sickle cell diseasePsychosocial functioningHealth care utilizationBaseline psychosocial factorsPain groupPain intensityCare utilizationPainDepressive symptomsDiagnostic criteriaBiopsychosocial factorsPsychosocial factorsBiopsychosocial variablesBaselineFurther studiesDiseaseSelf-report measuresFrequency groupPatients
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 options