2020
Patient 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 process
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