2023
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
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
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 assessmentAssessment 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 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 ResearchConceptsChronic 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
2018
From 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 interviewsQuantitative sensory testing is feasible and is well-tolerated in patients with sickle cell disease following a vaso-occlusive episode
Bakshi N, Lukombo I, Belfer I, Krishnamurti L. Quantitative sensory testing is feasible and is well-tolerated in patients with sickle cell disease following a vaso-occlusive episode. Journal Of Pain Research 2018, 11: 435-443. PMID: 29503580, PMCID: PMC5827673, DOI: 10.2147/jpr.s150066.Peer-Reviewed Original ResearchVaso-occlusive episodesQuantitative sensory testingSickle cell diseaseChronic painPain sensitivityCell diseaseSensory testingPainful vaso-occlusive episodesExperience chronic painFeasibility of recruitmentLarge prospective studiesEmergency room visitsExperimental pain sensitivityInherited blood disorderAltered painMedian agePain intensityPediatric patientsRoom visitsProspective studyInpatient hospitalizationSubset of individualsPainPatientsBlood disorders
2015
Development, Content Validity, and User Review of a Web-based Multidimensional Pain Diary for Adolescent and Young Adults With Sickle Cell Disease
Bakshi N, Stinson J, Ross D, Lukombo I, Mittal N, Joshi S, Belfer I, Krishnamurti L. Development, Content Validity, and User Review of a Web-based Multidimensional Pain Diary for Adolescent and Young Adults With Sickle Cell Disease. The Clinical Journal Of Pain 2015, 31: 580-590. PMID: 25565585, DOI: 10.1097/ajp.0000000000000195.Peer-Reviewed Original ResearchConceptsSickle cell diseasePain diaryHealth care utilizationElectronic pain diaryYoung adultsCare utilizationCell diseasePoor health-related qualityContent validityVaso-occlusive painDaily pain diarySeverity of painHealth-related qualityPain burdenModification of itemsPain experiencePainPatientsEnd-user reviewsElectronic diaryDiseaseAdultsAdolescentsPsychometric propertiesDiary