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 assessment
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
2018
iCanCope with Sickle Cell Pain: Design of a randomized controlled trial of a smartphone and web-based pain self-management program for youth with sickle cell disease
Palermo T, Zempsky W, Dampier C, Lalloo C, Hundert A, Murphy L, Bakshi N, Stinson J. iCanCope with Sickle Cell Pain: Design of a randomized controlled trial of a smartphone and web-based pain self-management program for youth with sickle cell disease. Contemporary Clinical Trials 2018, 74: 88-96. PMID: 30316999, PMCID: PMC6218943, DOI: 10.1016/j.cct.2018.10.006.Peer-Reviewed Original ResearchConceptsCognitive behavioral therapy interventionSelf-management skills trainingAttention control groupPain self-management programEmotional functioningPsychosocial interventionsSkills trainingParent caregiversSocial supportPain self-management interventionGoal settingTherapy interventionCaregiver responsesMost youthPotential mediatorsYouthHealth-related qualitySickle cell painHealth service useSelf-management programSelf-management interventionsSickle cell diseaseWeb-based programICanCopeAdolescents
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
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