2024
Impact of arginine therapy on kyotorphin in children with sickle cell disease and vaso-occlusive pain
Korman R, Hatabah D, Brown L, Harris F, Wilkinson H, Rees C, Bakshi N, Archer D, Dampier C, Morris C. Impact of arginine therapy on kyotorphin in children with sickle cell disease and vaso-occlusive pain. Blood Advances 2024, 8: 3267-3271. PMID: 38527291, PMCID: PMC11226964, DOI: 10.1182/bloodadvances.2023012209.Peer-Reviewed Original ResearchHigh-impact chronic pain in sickle cell disease: insights from the Pain in Sickle Cell Epidemiology Study (PiSCES)
Jagtiani A, Chou E, Gillespie S, Liu K, Krishnamurti L, McClish D, Smith W, Bakshi N. High-impact chronic pain in sickle cell disease: insights from the Pain in Sickle Cell Epidemiology Study (PiSCES). Pain 2024, 165: 2364-2369. PMID: 38787626, PMCID: PMC11404329, DOI: 10.1097/j.pain.0000000000003262.Peer-Reviewed Original ResearchHigh-impact chronic painSickle Cell Epidemiology StudyChronic painProportion of daysUS National Pain StrategySickle cell diseaseNational Pain StrategySelf-care activitiesEpidemiological studiesHigher levels of stressMean pain intensityCohort of individualsPain interferenceLevels of stressPhysical functionHealth outcomesHealthcare utilizationPhysical healthPain strategiesPain burdenPain intensityPain diaryCell diseaseDiary daysAffected subgroups
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 ResearchConceptsSickle 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 ResearchSex and frequency of pain episodes are associated with acute pain trajectories in adolescents with sickle cell disease
Astles R, Liu Z, Gillespie S, Lai K, Maillis A, Morris C, Lane P, Krishnamurti L, Bakshi N. Sex and frequency of pain episodes are associated with acute pain trajectories in adolescents with sickle cell disease. PAIN Reports 2023, 8: e1084. PMID: 37559677, PMCID: PMC10409410, DOI: 10.1097/pr9.0000000000001084.Peer-Reviewed Original ResearchHigher health care utilizationHealth care utilizationSickle cell diseaseAcute pain trajectoriesPain intensity scoresEmergency departmentPain trajectoriesPain episodesCell diseaseHigher mean pain intensity scoreIntensity scoresMean pain intensity scoreAcute pain episodesFrequency of painAdolescent female patientsFuture prospective studiesElectronic health recordsIntranasal opioidsPain frequencyAcute painPain intensityRetrospective reviewCare utilizationFemale patientsProspective studyParental 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 participantsInfertility488 Feasibility of Using the American Time Use Survey to Study the Impact of Sickle Cell Disease and Hematopoietic Cell Transplant on the Daily Lives of Patients and Their Caregivers: A Stellar Study
Khemani K, Stenger E, Arnold S, Bakshi N, Ross D, Smith C, Basu A, Krishnamurti L. 488 Feasibility of Using the American Time Use Survey to Study the Impact of Sickle Cell Disease and Hematopoietic Cell Transplant on the Daily Lives of Patients and Their Caregivers: A Stellar Study. Transplantation And Cellular Therapy 2023, 29: s366. DOI: 10.1016/s2666-6367(23)00556-0.Peer-Reviewed Original Research
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 ResearchConceptsHematopoietic 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 ResearchConceptsSickle 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 programsPainSickle Cell Transplantation Evaluation of Long-term and Late Effects Registry (STELLAR) to Compare Long-term Outcomes After Hematopoietic Cell Transplantation to Those in Siblings Without Sickle Cell Disease and in Nontransplanted Individuals With Sickle Cell Disease: Design and Feasibility Study
Krishnamurti L, Arnold S, Haight A, Abraham A, Guilcher G, John T, Bakshi N, Shenoy S, Syrjala K, Martin P, Chaudhury S, Eames G, Olowoselu O, Hsieh M, De La Fuente J, Kasow K, Stenger E, Mertens A, El-Rassi F, Lane P, Shaw B, Meacham L, Archer D. Sickle Cell Transplantation Evaluation of Long-term and Late Effects Registry (STELLAR) to Compare Long-term Outcomes After Hematopoietic Cell Transplantation to Those in Siblings Without Sickle Cell Disease and in Nontransplanted Individuals With Sickle Cell Disease: Design and Feasibility Study. JMIR Research Protocols 2022, 11: e36780. PMID: 35793124, PMCID: PMC9301564, DOI: 10.2196/36780.Peer-Reviewed Original ResearchHematopoietic cell transplantationSickle cell diseaseINTERNATIONAL REGISTERED REPORT IDENTIFIERLong-term outcomesCell diseaseTransplantation evaluationCell transplantationLate effectsPost-HCT patientsYear post-HCTFeasibility of recruitmentHealth-related qualityMarrow Transplant ResearchElectronic pain diaryChronic graftNontransplanted individualsPost-HCTHost diseasePain diaryBlood pressureDaily painInternational BloodHandgrip testHip circumferenceSexual functionEffects of Music Therapy on Quality of Life in Adults with Sickle Cell Disease (MUSIQOLS): A Mixed Methods Feasibility Study [Erratum]
Rodgers-Melnick S, Lin L, Gam K, Souza de Santana Carvalho E, Jenerette C, Rowland D, Little J, Dusek J, Bakshi N, Krishnamurti L. Effects of Music Therapy on Quality of Life in Adults with Sickle Cell Disease (MUSIQOLS): A Mixed Methods Feasibility Study [Erratum]. Journal Of Pain Research 2022, 15: 1123-1124. PMID: 35469252, PMCID: PMC9034844, DOI: 10.2147/jpr.s370799.Peer-Reviewed Original ResearchEffects of Music Therapy on Quality of Life in Adults with Sickle Cell Disease (MUSIQOLS): A Mixed Methods Feasibility Study
Rodgers-Melnick S, Lin L, Gam K, de Santana Carvalho E, Jenerette C, Rowland D, Little J, Dusek J, Bakshi N, Krishnamurti L. Effects of Music Therapy on Quality of Life in Adults with Sickle Cell Disease (MUSIQOLS): A Mixed Methods Feasibility Study. Journal Of Pain Research 2022, 15: 71-91. PMID: 35046718, PMCID: PMC8760983, DOI: 10.2147/jpr.s337390.Peer-Reviewed Original ResearchSickle cell diseaseQuality of lifePreliminary efficacyMT participantsCell diseaseWaitlist controlMusic therapyPROMIS Pain InterferencePROMIS sleep disturbanceMixed methods feasibility studyMusic therapy protocolMethods feasibility studyMusic therapy interventionSelf-management skillsPain interferenceSleep disturbancesTherapy interventionWLC participantsTherapy protocolsDiary completionClinical researchTherapyAdultsEfficacyMixed methods intervention design
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 ResearchConceptsSickle 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 ResearchA Decision Support Tool for Allogeneic Hematopoietic Stem Cell Transplantation for Children With Sickle Cell Disease: Acceptability and Usability Study
Veludhandi A, Ross D, Sinha C, McCracken C, Bakshi N, Krishnamurti L. A Decision Support Tool for Allogeneic Hematopoietic Stem Cell Transplantation for Children With Sickle Cell Disease: Acceptability and Usability Study. JMIR Formative Research 2021, 5: e30093. PMID: 34709190, PMCID: PMC8587189, DOI: 10.2196/30093.Peer-Reviewed Original ResearchHematopoietic stem cell transplantationSickle cell diseaseAllogeneic hematopoietic stem cell transplantationHealth care providersStem cell transplantationCare providersCell transplantationPatient consultsCell diseaseHCT comorbidity indexPhysician-patient collaborationOttawa Decision Support FrameworkChronic blood transfusionsDisease-modifying therapiesTransplant registry dataMost participantsHealth care settingsQuality of lifePatient-specific measuresCurative intentComorbidity indexHCT outcomesBlood transfusionRisk factorsPatient managementIntraindividual 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 ResearchConceptsSickle 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 ResearchConceptsProportion 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 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 polymerizationTrialsSeverityHemoglobin