2021
Refining Patient-Centered Measures of End-of-Life Care Quality for Children With Cancer
Ananth P, Mun S, Reffat N, Kang SJ, Pitafi S, Ma X, Gross CP, Wolfe J. Refining Patient-Centered Measures of End-of-Life Care Quality for Children With Cancer. JCO Oncology Practice 2021, 18: e372-e382. PMID: 34613797, PMCID: PMC8932486, DOI: 10.1200/op.21.00447.Peer-Reviewed Original ResearchConceptsMedian importance scoresPalliative care consultationHealth care usePatient-reported outcomesCross-sectional electronic surveyLife care qualityPatient-centered measuresHealth care teamHealth care professionalsHealth care resourcesCandidate quality measuresCancer stakeholdersSymptom screeningCare consultationsCare useCare teamLife careCare professionalsPatient needsCare resourcesFamily stakeholdersCare qualityMedian scoreQuality measuresElectronic survey
2016
Connect MDS/AML: design of the myelodysplastic syndromes and acute myeloid leukemia disease registry, a prospective observational cohort study
Steensma DP, Abedi M, Bejar R, Cogle CR, Foucar K, Garcia-Manero G, George TI, Grinblatt D, Komrokji R, Ma X, Maciejewski J, Pollyea DA, Savona MR, Scott B, Sekeres MA, Thompson MA, Swern AS, Nifenecker M, Sugrue MM, Erba H. Connect MDS/AML: design of the myelodysplastic syndromes and acute myeloid leukemia disease registry, a prospective observational cohort study. BMC Cancer 2016, 16: 652. PMID: 27538433, PMCID: PMC4991094, DOI: 10.1186/s12885-016-2710-6.Peer-Reviewed Original ResearchConceptsAcute myeloid leukemiaObservational cohort studyDisease RegistryCohort studyClinical outcomesPatient-reported health-related qualityProspective observational cohort studyBaseline patient characteristicsHigh-risk MDSHealth-related qualityNon-interventional studyPatient-reported outcomesLower-risk MDSHealth economic outcomesMinimal diagnostic criteriaRoutine clinical settingNatural history studiesBackgroundMyelodysplastic syndromesPersistent cytopeniasOlder patientsPatient characteristicsTreatment patternsAlternate diagnosisCentral reviewMyelodysplastic syndrome