2020
Primary 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
2016
What Are the Expectations of Patients in Decision Making Process for Disease Modifying Therapies for Sickle Cell Disease: Do They Care about Shared Decision Making?
Ross D, Bakshi N, Khemani K, Sinha C, Loewenstein G, Krishnamurti L. What Are the Expectations of Patients in Decision Making Process for Disease Modifying Therapies for Sickle Cell Disease: Do They Care about Shared Decision Making? Blood 2016, 128: 5968. DOI: 10.1182/blood.v128.22.5968.5968.Peer-Reviewed Original ResearchSickle cell diseasePerspectives of patientsLong-term outcomesMedical historyExpectations of patientsCell diseaseDisease-Modifying TherapiesChronic blood transfusionsPast medical historyBone marrow transplantationGood clinical evidencePatient's medical historyImpact of treatmentPatients' personal valuesImportance of patientsInterview guideMedical decisionsHealth care decisionsModifying therapiesBlood transfusionMarrow transplantationClinical evidenceTreatment optionsOpen-ended interview guideComplex medical decisions