2022
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
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
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 assessmentPrimary 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 decisions
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