2025
Longitudinal graphics of patient-reported physical function in patients treated for hematologic malignancies
Thanarajasingam G, Bhatnagar V, Noble B, Chen T, Fiero M, Hoffman R, Jeffery M, Mazza G, Mascarenhas J, Mesa R, Murugappan M, Ross J, Sidana S, Warsame R, Kluetz P, Dueck A. Longitudinal graphics of patient-reported physical function in patients treated for hematologic malignancies. BMC Medical Research Methodology 2025, 25: 189. PMID: 40775758, PMCID: PMC12329971, DOI: 10.1186/s12874-025-02617-y.Peer-Reviewed Original ResearchMeSH KeywordsClinical Trials, Phase II as TopicClinical Trials, Phase III as TopicCross-Sectional StudiesFemaleHematologic NeoplasmsHumansLongitudinal StudiesMaleMiddle AgedMulticenter Studies as TopicPatient Reported Outcome MeasuresQuality of LifeRandomized Controlled Trials as TopicSurveys and QuestionnairesUnited StatesUnited States Food and Drug AdministrationConceptsFood and Drug AdministrationHematologic malignanciesPhysical functionCAR-T cell therapyUS Food and Drug AdministrationPatient-reported physical functionCore patient-reported outcomesPROMIS-29 questionnairePatient-reported outcomesEORTC QLQ-C30CAR-TStacked bar chartsAutologous transplantationMyeloproliferative neoplasmsTolerability endpointsTreatment toleranceMultiple myelomaBackgroundThe US Food and Drug AdministrationCell therapyClinical trialsMalignancyCancer clinical trialsPatient stakeholdersPROMIS-29Fact QuestionnaireAssociation of SARS-CoV-2 With Health-related Quality of Life 1 Year After Illness Using Latent Transition Analysis
Wisk L, Gottlieb M, Chen P, Yu H, O’Laughlin K, Stephens K, Nichol G, Montoy J, Rodriguez R, Santangelo M, Gatling K, Spatz E, Venkatesh A, Rising K, Hill M, Huebinger R, Idris A, Willis M, Kean E, McDonald S, Elmore J, Weinstein R. Association of SARS-CoV-2 With Health-related Quality of Life 1 Year After Illness Using Latent Transition Analysis. Open Forum Infectious Diseases 2025, 12: ofaf278. PMID: 40496983, PMCID: PMC12150399, DOI: 10.1093/ofid/ofaf278.Peer-Reviewed Original ResearchCOVID-19-like illnessPoor physicalOptimal HRQoLHealth-related quality of life 1 yearHealth-related quality-of-lifeLatent transition analysisHealth-related qualityPatient-reported HRQoLQuality of life 1 yearFollow-up assessmentQuality-of-lifeLongitudinal registry studySuboptimal HRQoLInverse probability weightingMental HRQOLPhysical HRQoLOverall HRQoL.PROMIS-29HRQoL scoresSARS-CoV-2 testingHRQoL changesHRQoL classesHRQoLWell-being classesTested SARS-CoV-2Health-Related Quality of Life Metrics in Patients With Retrograde Cricopharyngeus Dysfunction.
Jacobs D, Duffy J, Lerner B, Lerner M. Health-Related Quality of Life Metrics in Patients With Retrograde Cricopharyngeus Dysfunction. Annals Of Otology Rhinology & Laryngology 2025, 34894251342088. PMID: 40420548, DOI: 10.1177/00034894251342088.Peer-Reviewed Original ResearchPROMIS-29 questionnaireRetrograde cricopharyngeus dysfunctionPROMIS-29Quality of lifeLevels of anxietySubdomains of quality of lifeHealth-related quality of life metricsHealth-related qualitySocial Anxiety QuestionnaireAnxiety metricsQuality of life metricsPain impairmentReport anxietyMonitoring response to therapyLogistic regressionAnxiety QuestionnaireNational averageResponse to therapyMonitoring therapy responseQuestionnaireClinical questionsSocial anxietyAnxietySleep impairmentClinicians
2024
Race, Ethnicity, and Gender Differences in Patient Reported Well-Being and Cognitive Functioning Within 3 Months of Symptomatic Illness During COVID-19 Pandemic
Hill M, Huebinger R, Ebna Mannan I, Yu H, Wisk L, O’Laughlin K, Gentile N, Stephens K, Gottlieb M, Weinstein R, Koo K, Santangelo M, Saydah S, Spatz E, Lin Z, Schaeffer K, Kean E, Montoy J, Rodriguez R, Idris A, McDonald S, Elmore J, Venkatesh A. Race, Ethnicity, and Gender Differences in Patient Reported Well-Being and Cognitive Functioning Within 3 Months of Symptomatic Illness During COVID-19 Pandemic. Journal Of Racial And Ethnic Health Disparities 2024, 1-18. PMID: 39172356, PMCID: PMC11891493, DOI: 10.1007/s40615-024-02124-8.Peer-Reviewed Original ResearchPROMIS T-scoresPain interferenceBlack participantsWell-beingHealth-related quality of lifeNon-Hispanic white participantsCognitive functionMeasures of healthHealth-related qualityMethodsThis prospective cohort studyFollow-up surveyProspective cohort studyT-scoreQuality of lifeCOVID-19-related health outcomesLower well-beingPROMIS-29Physical functionHealth outcomesBaseline to 3Social participationWhite participantsCohort studyCOVID-19Sleep disturbanceThe PAX LC Trial: A Decentralized, Phase 2, Randomized, Double-Blind Study of Nirmatrelvir/Ritonavir Compared with Placebo/Ritonavir for Long COVID
Krumholz H, Sawano M, Bhattacharjee B, Caraballo C, Khera R, Li S, Herrin J, Coppi A, Holub J, Henriquez Y, Johnson M, Goddard T, Rocco E, Hummel A, Al Mouslmani M, Putrino D, Carr K, Carvajal-Gonzalez S, Charnas L, De Jesus M, Ziegler F, Iwasaki A. The PAX LC Trial: A Decentralized, Phase 2, Randomized, Double-Blind Study of Nirmatrelvir/Ritonavir Compared with Placebo/Ritonavir for Long COVID. The American Journal Of Medicine 2024, 138: 884-892.e4. PMID: 38735354, DOI: 10.1016/j.amjmed.2024.04.030.Peer-Reviewed Original ResearchLC trialPROMIS-29Participants' homesTargeting viral persistencePlacebo-controlled trialDouble-blind studyElectronic health recordsCore Outcome MeasuresLong COVIDEQ-5D-5LRepeated measures analysisEvidence-based treatmentsPhase 2Double-blindParticipant-centred approachStudy drugPrimary endpointSecondary endpointsCommunity-dwellingHealth recordsHealthcare utilizationContiguous US statesViral persistencePatient groupDrug treatment
2023
Observational cohort study of long‐term outcomes of liver transplantation in haemophilia
Ragni M, Callis J, Daoud N, Hu B, Manuel M, Santos J, Schwartz J, Friedman K, Kouides P, Kuriakose P, Leavitt A, Lim M, Machin N, Recht M, Chrisentery‐Singleton T. Observational cohort study of long‐term outcomes of liver transplantation in haemophilia. Haemophilia 2023, 30: 87-97. PMID: 38111071, DOI: 10.1111/hae.14910.Peer-Reviewed Original ResearchConceptsHaem-A-QoLPROMIS-29Hemophilia treatment centersYears post-OLTXQuality of lifeQuality-of-life impactObservational cohort studyHemophilia ALiver transplantationPost-OLTxHigher sportsHemophilia B (HBLong-term outcome of liver transplantationUnivariate regression modelsCohort studyOutcome of liver transplantationTotal scoreB (HBJoint diseaseLong-term outcomesNon-severe diseaseNon-CaucasiansRegression modelsStudent's t-testDemographic dataQuality of Life in Emicizumab-Treated People with Hemophilia A in the ATHN 7 Hemophilia Natural History Study - an Assessment of Baseline PROMIS®-29 Scores
Buckner T, Daoud N, Lee L, Lim E, Schwartz J, Raimundo K, Recht M. Quality of Life in Emicizumab-Treated People with Hemophilia A in the ATHN 7 Hemophilia Natural History Study - an Assessment of Baseline PROMIS®-29 Scores. Blood 2023, 142: 3998. DOI: 10.1182/blood-2023-174092.Peer-Reviewed Original ResearchImpairment of physical functionPain interferencePhysical functionPROMIS-29Reference population meanQuality of lifePatient-Reported Outcomes Measurement Information SystemReference populationOutcomes Measurement Information SystemT-scoreHealth-related quality of lifeCohort studyPatient-reported outcome measuresStudy entrySocial health domainsMeasurement Information SystemPROMIS-29 profileT-score metricUS reference populationHealth-related qualityUS general populationSleep disturbanceSymptoms of anxietyProspective observational cohort studyPROMIS measures
2014
Longitudinal Evaluation of PROMIS-29 and FACIT-Dyspnea Short Forms in Systemic Sclerosis
Hinchcliff ME, Beaumont JL, Carns MA, Podlusky S, Thavarajah K, Varga J, Cella D, Chang RW. Longitudinal Evaluation of PROMIS-29 and FACIT-Dyspnea Short Forms in Systemic Sclerosis. The Journal Of Rheumatology 2014, 42: 64-72. PMID: 25362656, PMCID: PMC4480645, DOI: 10.3899/jrheum.140143.Peer-Reviewed Original ResearchConceptsSystemic sclerosisPROMIS-29HAQ-DIHealth statusSF-36 physical component summaryShort formChange scoresSF-36 rolePhysical component scaleSF-36 scoresOutcomes Measurement Information SystemPhysical component summarySF-36 PCSPhysical function scalePhysical function assessmentMeasurement Information SystemMRSS improvementComponent summarySF-36Spearman correlation coefficientPhysical functionPhysical functioningHealth profileFunction assessmentFunctional limitations
2011
Validity of two new patient‐reported outcome measures in systemic sclerosis: Patient‐reported outcomes measurement information system 29‐item health profile and functional assessment of chronic illness therapy–dyspnea short form
Hinchcliff M, Beaumont JL, Thavarajah K, Varga J, Chung A, Podlusky S, Carns M, Chang RW, Cella D. Validity of two new patient‐reported outcome measures in systemic sclerosis: Patient‐reported outcomes measurement information system 29‐item health profile and functional assessment of chronic illness therapy–dyspnea short form. Arthritis Care & Research 2011, 63: 1620-1628. PMID: 22034123, PMCID: PMC3205420, DOI: 10.1002/acr.20591.Peer-Reviewed Original ResearchMeSH KeywordsAdultAge of OnsetAgedChronic DiseaseCross-Sectional StudiesDyspneaFemaleHealth StatusHealth Status IndicatorsHumansMaleMichiganMiddle AgedPredictive Value of TestsPrognosisRegistriesReproducibility of ResultsScleroderma, SystemicSelf ReportSeverity of Illness IndexTime FactorsYoung AdultConceptsOutcomes Measurement Information SystemComposite severity scoreMeasurement Information SystemSeverity scorePRO instrumentsPROMIS-29SSc patientsHealth profileFunctional assessmentHealth statusPatient-reported outcome measuresPatient-reported outcome instrumentsRaynaud's phenomenon symptomsSSc disease durationSystemic sclerosis trialMean patient ageNew patient-reported outcome measurePatient-Reported Outcomes Measurement Information SystemPhysical functioning scoresCross-sectional studyDisease severity scoreShort formNew PRO instrumentComplicated scoring systemsDisease duration
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