2021
A 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
What 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 Original ResearchMeSH 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 decisionsAssessment 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 options
2017
Novel Metrics in the Longitudinal Evaluation of Pain Data in Sickle Cell Disease
Bakshi N, Smith M, Ross D, Krishnamurti L. Novel Metrics in the Longitudinal Evaluation of Pain Data in Sickle Cell Disease. The Clinical Journal Of Pain 2017, 33: 517-527. PMID: 27584817, DOI: 10.1097/ajp.0000000000000431.Peer-Reviewed Original ResearchConceptsMaximum daily painSickle cell diseasePain intensity dataChronic painCell diseasePain dataInterindividual variationMaximum daily pain scoresPatient-reported end pointsDaily pain scoresPain-free daysInterventional clinical trialsBurden of painPeriod of hospitalizationElectronic pain diaryDiary daysHealth care providersPain burdenPain scoresPain diaryPain intensityDaily painSCD patientsPain trendsClinical trials
2016
Development, Implementation, and Testing of a Web Based Decision Aid for Facilitating Shared Decision Making for Disease Modifying Therapies for Sickle Cell Disease
Krishnamurti L, Ross D, Bakshi N, Khemani K, Sinha C, Loewenstein G. Development, Implementation, and Testing of a Web Based Decision Aid for Facilitating Shared Decision Making for Disease Modifying Therapies for Sickle Cell Disease. Blood 2016, 128: 5919. DOI: 10.1182/blood.v128.22.5919.5919.Peer-Reviewed Original ResearchSickle cell diseaseHematopoietic stem cell transplantationClinical trialsCell diseaseClinical decisionPatients/family membersFinal decision aidOttawa Decision Support FrameworkDisease-Modifying TherapiesChronic blood transfusionsStem cell transplantationRandomized clinical trialsDecision aidMix of patientsEligible patientsModifying therapiesLate complicationsBlood transfusionFavorable patientsSubstantial morbidityCell transplantationQualitative interviewsPhysicians' perceptionsPremature mortalitySubstantial burden
2013
Development, Establishment Of the Psychometric Properties and Usability Testing Of a Novel Multi-Dimensional Web Based Diary For Children With Sickle Cell Disease
Bakshi N, Stinson J, Lukombo I, Ross D, Mittal N, Joshi S, Krishnamurti L. Development, Establishment Of the Psychometric Properties and Usability Testing Of a Novel Multi-Dimensional Web Based Diary For Children With Sickle Cell Disease. Blood 2013, 122: 2961. DOI: 10.1182/blood.v122.21.2961.2961.Peer-Reviewed Original ResearchElectronic pain diarySickle cell diseasePain diaryBurden of painPain intensityCell diseaseClinical careHealth care visitsVaso-occlusive crisisPatients ages 15Coordination of careNumerical rating scaleDiary daysEffect of painContent validityElectronic painAdult patientsCare visitsDaily painMusculoskeletal painRelated morbidityPain interferenceCurrent painPain phenotypesClinical trials