2025
At-home Breast Oncology care Delivered with EHealth solutions (ABODE) study protocol: a randomised controlled trial
Mac A, Kalia M, Reel E, Amir E, Isenberg A, Kim R, Kennedy E, Koch C, Li M, McCready D, Metcalfe K, Okrainec A, Papadakos J, Rotstein S, Rodin G, Xu W, Zhong T, Cleland J, Forbes R, Easson A, Escallon J, Haykal S, Jarvis S, Leong W, McCuaig J, Santa Mina D, Peck L, Reedijk M, Sarvanantham S, Schaffer D, Thain E, Walimohamed F, Cil T. At-home Breast Oncology care Delivered with EHealth solutions (ABODE) study protocol: a randomised controlled trial. BMJ Open 2025, 15: e091579. PMID: 40345693, PMCID: PMC12067776, DOI: 10.1136/bmjopen-2024-091579.Peer-Reviewed Original ResearchConceptsRandomised controlled trialsPatient activationStandard careEHealth solutionsCancer care continuumPatient-reported outcome measuresHealth service outcomesBreast cancerMeasuring patient activationControlled trialsAmbulatory care servicesTertiary care cancer centreMonths post-diagnosisIn-person servicesPatient-reported outcomesMeasured waiting timePeer-reviewed journalsQuality of lifeCare continuumCare servicesIntervention groupHealthcare deliveryRemote carePatient programmeIndividualised supportImpact of the Kidney Score Platform on Communication About and Patients’ Engagement With Chronic Kidney Disease Health: Pre–Post Intervention Study
Tuot D, Crowley S, Katz L, Leung J, Alcantara-Cadillo D, Ruser C, Talbot-Montgomery E, Vassalotti J. Impact of the Kidney Score Platform on Communication About and Patients’ Engagement With Chronic Kidney Disease Health: Pre–Post Intervention Study. JMIR Formative Research 2025, 9: e56855. PMID: 40300154, PMCID: PMC12054969, DOI: 10.2196/56855.Peer-Reviewed Original ResearchConceptsPre-post intervention studyPatient Activation MeasureKidney healthPractice toolkitIntervention studiesIncrease patient activationDiabetes statusPrimary care cliniciansPrimary care settingPercentage of veteransChronic kidney diseaseUS adult populationClinical practice guidelinesChronic kidney disease managementChronic kidney disease education programClinician engagementPatient engagementCare cliniciansCare settingsPaired t-testPatient knowledgeTailored educationKnowledge scoresPatient activationPatient interactionsGlobal Delphi consensus on treatment goals for generalized pustular psoriasis
Barker J, Casanova E, Choon S, Foley P, Fujita H, Gonzalez C, Gooderham M, Marrakchi S, Puig L, Romiti R, Thaçi D, Zheng M, Strober B, Magariños G, Reich A, Nakano J, Gao X, Zhang F, Sayed M, Welzel J, Gisondi P, Yaacob Y, Prignano F, Tada Y, Jo S, van der Kerkhof P, Casanova E, Rivera R, Schmitt-Egenolf M, Tsai T, Baskan E, Burden D, Mostaghimi A, Reisner D, Eyerich K, Stratigos A, Pavlovsky L, Quintero D, Imafuku S, Becker J, Affandi A, Cortés C, Carrascosa J, Wiseman M, Viguier M, Bhutani T. Global Delphi consensus on treatment goals for generalized pustular psoriasis. British Journal Of Dermatology 2025, 192: 706-716. PMID: 39844356, DOI: 10.1093/bjd/ljae491.Peer-Reviewed Original ResearchMeSH KeywordsConsensusDelphi TechniqueDermatologic AgentsHumansPatient Care PlanningPatient ParticipationPsoriasisQuality of LifeConceptsLong-term treatment goalsGeneralized pustular psoriasisPatient perspectiveTreatment goalsDelphi panelPerspectives of patientsPatient-centred approachPustular psoriasisTreatment of generalized pustular psoriasisGPP treatmentQuality of lifePrevention of life-threatening complicationsManagement of comorbiditiesPatient participationPatient representativesLife-threatening complicationsTailored treatment planSymptom burdenShort-term treatment goalsDelphi consensusNeutrophilic inflammatory diseasesSymptom controlSteering CommitteeSystematic literature reviewDisease activity
2024
The UPFRONT project: tailored implementation and evaluation of a patient decision aid to support shared decision-making about management of symptomatic uterine fibroids
Forcino R, Durand M, Schubbe D, Engel J, Banks E, Laughlin-Tommaso S, Foster T, Madden T, Anchan R, Politi M, Lindholm A, Gargiulo R, Seshan M, Tomaino M, Zhang J, Acquilano S, Akinfe S, Sharma A, Aarts J, Elwyn G. The UPFRONT project: tailored implementation and evaluation of a patient decision aid to support shared decision-making about management of symptomatic uterine fibroids. Implementation Science 2024, 19: 75. PMID: 39501337, PMCID: PMC11536971, DOI: 10.1186/s13012-024-01404-5.Peer-Reviewed Original ResearchConceptsPatient decision aidsDecision aidClinician trainingSymptomatic uterine fibroidsDecision aid implementationVisit audio-recordingsImplementing decision aidsDecision-making scoresDecision aid useUterine fibroidsDecision-making experiencesIntention-to-treat resultsAid useAssessment of organizational readinessClinician surveyManagement of symptomatic uterine fibroidsOPTION-5Collaboration scoresDecision-makingIntention-to-treatEvaluate implementationPatient reportsAudio-recordedOrganizational readinessImplementation strategiesPatient-focused drug development in primary sclerosing cholangitis: Insights on patient priorities and involvement in clinical trials
Li M, Pai R, Gomel R, Vyas M, Callif S, Hatchett J, Bowlus C, Lai J. Patient-focused drug development in primary sclerosing cholangitis: Insights on patient priorities and involvement in clinical trials. Hepatology Communications 2024, 8: e0433. PMID: 38727680, PMCID: PMC11093571, DOI: 10.1097/hc9.0000000000000433.Peer-Reviewed Original ResearchConceptsPrimary sclerosing cholangitisClinical trialsSclerosing cholangitisDrug trialsTrial participantsMultivariate logistic regressionAssociated with willingnessInflammatory bowel diseaseLong-term riskReferral of patientsDrug developmentTherapy trialsDisease progressionTrial interestBowel diseasePatient-focused drug developmentTreatment trialsPatientsBiopsy requirementsPruritusPatient interestPredictors of patients' willingnessLogistic regressionCholangitisPatients' willingnessPerspectives of Adolescents and Young Adults With Sickle Cell Disease and Clinicians on Improving Transition Readiness With a Video Game Intervention
Aronson P, Nolan S, Schaeffer P, Hieftje K, Ponce K, Calhoun C. Perspectives of Adolescents and Young Adults With Sickle Cell Disease and Clinicians on Improving Transition Readiness With a Video Game Intervention. Journal Of Pediatric Hematology/Oncology 2024, 46: e147-e155. PMID: 38237001, DOI: 10.1097/mph.0000000000002810.Peer-Reviewed Original ResearchMeSH KeywordsAdolescentAnemia, Sickle CellChildHumansPatient ParticipationTransition to Adult CareYoung AdultConceptsVideo game interventionPediatric to adult careOptimize self-efficacyGame interventionPatient engagementSelf-efficacyAdult careIdentified 4 main themesMedical decisionsImprove transition readinessYoung adultsExperiences of cliniciansQuaternary-care hospitalSickle cell diseaseData saturationTransition readinessMultilevel determinantsSemistructured interviewsClinician experienceHome managementCareInductive analysisCell diseaseDecision-makingIntervention
2023
Motivations and demographic differences in pregnant individuals in the decision to participate in research
Scott T, Mercedes C, Lin H, Katz D. Motivations and demographic differences in pregnant individuals in the decision to participate in research. Journal Canadien D'anesthésie 2023, 71: 87-94. PMID: 37919628, DOI: 10.1007/s12630-023-02635-8.Peer-Reviewed Original ResearchMeSH KeywordsClinical Trials as TopicDemographyFemaleHumansMotivationPatient ParticipationPregnancySelf ReportSurveys and QuestionnairesConceptsPregnant individualsDemographic associationsResultsThe survey response rateSelf-reported demographicsSurvey response ratePredictive of participationNon-HispanicPatients' reasonsVaginal deliverySurvey-based studyResearch studiesInfluence participationScreening failureSurvey responsesParticipantsActive participationDemographic differencesBachelor's degreeNon-blacksResponse ratePreservative-free morphineConclusionsThese findingsSurveyClinical difficultiesIndividuals
2022
Advancing Peripheral Artery Disease Quality of Care and Outcomes Through Patient-Reported Health Status Assessment: A Scientific Statement From the American Heart Association
Smolderen KG, Alabi O, Collins TC, Dennis B, Goodney PP, Mena-Hurtado C, Spertus JA, Decker C, Health O. Advancing Peripheral Artery Disease Quality of Care and Outcomes Through Patient-Reported Health Status Assessment: A Scientific Statement From the American Heart Association. Circulation 2022, 146: e286-e297. PMID: 36252117, DOI: 10.1161/cir.0000000000001105.Peer-Reviewed Original ResearchMeSH KeywordsAmerican Heart AssociationHealth StatusHumansPatient ParticipationPatient Reported Outcome MeasuresPeripheral Arterial DiseaseUnited StatesConceptsPAD carePeripheral artery diseasePatient-reported outcomesClinical practiceAmerican Heart AssociationChronic disease managementHealth system perspectiveClinical trial contextPatient engagement strategiesScientific statementHealth status assessmentDisease QualityArtery diseaseHeart AssociationPRO measuresClinical phenotypeBiomedical variablesHealth equityTrial contextRisk adjustmentCareDisease managementStatus assessmentOutcomesPotential benefitsIntegrating a Patient Engagement App into an Electronic Health Record-Enabled Workflow Using Interoperability Standards
Lobach D, Boxwala A, Kashyap N, Heaney-Huls K, Chiao A, Rafter T, Lomotan E, Harrison M, Dymek C, Swiger J, Dullabh P. Integrating a Patient Engagement App into an Electronic Health Record-Enabled Workflow Using Interoperability Standards. Applied Clinical Informatics 2022, 13: 1163-1171. PMID: 36516969, PMCID: PMC9750793, DOI: 10.1055/s-0042-1758736.Peer-Reviewed Original ResearchMeSH KeywordsCOVID-19Electronic Health RecordsHealth Level SevenHumansMobile ApplicationsPatient ParticipationWorkflowConceptsFast Healthcare Interoperability ResourcesApplication programming interfaceFHIR standardElectronic health recordsInteroperability standardsApplication development teamClinical workflowCOVID-19 trackerHealth recordsStandards-based approachIntegration of appsFHIR resourcesProgramming interfaceMobile health applicationsMobile applicationsWorkflow integrationDevelopment teamsClinician workflowPartial implementationWorkflowHealth applicationsAppsClinical systemsSuch integrationText messagesShared Decision-making in the U.S.: Evidence exists, but implementation science must now inform policy for real change to occur
Lu Y, Elwyn G, Moulton BW, Volk RJ, Frosch DL, Spatz ES. Shared Decision-making in the U.S.: Evidence exists, but implementation science must now inform policy for real change to occur. Zeitschrift Für Evidenz Fortbildung Und Qualität Im Gesundheitswesen 2022, 171: 144-149. PMID: 35599230, DOI: 10.1016/j.zefq.2022.04.031.Peer-Reviewed Original ResearchMeSH KeywordsDecision MakingDecision Making, SharedGermanyHealth PolicyHumansImplementation SciencePatient ParticipationStakeholder Perspectives on Hospitalization Decisions and Shared Decision-Making in Bronchiolitis.
Aronson PL, Schaeffer P, Ponce KA, Gainey TK, Politi MC, Fraenkel L, Florin TA. Stakeholder Perspectives on Hospitalization Decisions and Shared Decision-Making in Bronchiolitis. Hospital Pediatrics 2022, 12: 473-482. PMID: 35441213, PMCID: PMC9647631, DOI: 10.1542/hpeds.2021-006475.Peer-Reviewed Original ResearchMeSH KeywordsBronchiolitisChildChild, PreschoolDecision MakingDecision Making, SharedHospitalizationHumansPatient ParticipationConceptsParents' perspectivesSocial-emotional factorsParents of childrenParents' emotionsChild's ageTraining cliniciansEmotionsHospitalization decisionsParents' preferencesParentsDecision-making processInductive analysisChildrenClinical factorsChildren's HospitalMost hospitalizationsEmergency departmentHealth literacyUnpredictable courseBronchiolitisClinicians' decisionsHospitalizationCliniciansInterviewsHospitalMidwest rural‐urban disparities in use of patient online services for COVID‐19
Huang M, Wen A, He H, Wang L, Liu S, Wang Y, Zong N, Yu Y, Prigge J, Costello B, Shah N, Ting H, Doubeni C, Fan J, Liu H, Patten C. Midwest rural‐urban disparities in use of patient online services for COVID‐19. The Journal Of Rural Health 2022, 38: 908-915. PMID: 35261092, PMCID: PMC9115171, DOI: 10.1111/jrh.12657.Peer-Reviewed Original ResearchMeSH KeywordsAdultCOVID-19COVID-19 TestingFemaleHumansPandemicsPatient ParticipationRural PopulationConceptsRural patientsUrban patientsCOVID-19Sociodemographic factorsCOVID-19-related careUrban-rural ratioMidwest health systemMayo Clinic patientsPatient sociodemographic factorsHealth carePublic health intervention strategiesHealth intervention strategiesCOVID-19 diagnosisHealth care issuesClinic patientsRural-urban disparitiesPatient portalsPatientsPortal messagesPatient engagementUrban-rural disparitiesCare issuesHealth systemUrban-rural localityIntervention strategiesThe ENHANCE-AF clinical trial to evaluate an atrial fibrillation shared decision-making pathway: Rationale and study design
Baykaner T, Pundi K, Lin B, Lu Y, DeSutter K, Lhamo K, Garay G, Nunes JC, Morin DP, Sears SF, Chung MK, Paasche-Orlow MK, Sanders LM, Bunch TJ, Hills MT, Mahaffey KW, Stafford RS, Wang PJ. The ENHANCE-AF clinical trial to evaluate an atrial fibrillation shared decision-making pathway: Rationale and study design. American Heart Journal 2022, 247: 68-75. PMID: 35092723, DOI: 10.1016/j.ahj.2022.01.013.Peer-Reviewed Original ResearchMeSH KeywordsAnticoagulantsAtrial FibrillationDecision Making, SharedHumansPatient ParticipationStrokeConceptsAtrial fibrillationClinical trialsTransient ischemic attackDecisional Conflict ScaleWishes of patientsDecision aidAF careAnticoagulation adherenceAnticoagulation useIndex visitIschemic attackMajor bleedingAnticoagulation therapyUsual careSecondary outcomesPrimary outcomePatient satisfactionStroke reductionClinician satisfactionHealth literacyClinicians toolsTreatment planNew decision aidDecision-making experiencesPatientsPartnering with patients in clinical trials of pain treatments: a narrative review
Holzer KJ, Veasley C, Kerns RD, Edwards RR, Gewandter JS, Langford DJ, Yaeger LH, McNicol E, Ferguson M, Turk DC, Dworkin RH, Haroutounian S. Partnering with patients in clinical trials of pain treatments: a narrative review. Pain 2022, 163: 1862-1873. PMID: 35297799, DOI: 10.1097/j.pain.0000000000002600.Peer-Reviewed Original ResearchConceptsPain treatmentClinical trialsPatient engagementNarrative reviewClinical researchPatient-centered clinical researchPain research studiesPain-related studiesMeaningful patient engagementClinical studiesPatient recruitmentPatient partnersPatientsTrialsTreatmentCurrent evaluationReviewSpecific guidanceSupport Models for Addiction Related Treatment (SMART) for pregnant women: Study protocol of a cluster randomized trial of two treatment models for opioid use disorder in prenatal clinics
Forray A, Mele A, Byatt N, Tobon A, Gilstad-Hayden K, Hunkle K, Hong S, Lipkind H, Fiellin DA, Callaghan K, Yonkers KA. Support Models for Addiction Related Treatment (SMART) for pregnant women: Study protocol of a cluster randomized trial of two treatment models for opioid use disorder in prenatal clinics. PLOS ONE 2022, 17: e0261751. PMID: 35025898, PMCID: PMC8758001, DOI: 10.1371/journal.pone.0261751.Peer-Reviewed Original ResearchConceptsOpioid use disorderPregnant womenUse disordersPrenatal clinicsClinical trialsReproductive health cliniciansCollaborative care approachTRIAL REGISTRATION NUMBERCommunity Healthcare OutcomesMatched-pair clusterPatient treatment engagementTreatment modelObstetric providersOUD treatmentPrimary outcomeObstetrical providersPostpartum womenHealth cliniciansCare approachRegistration numberTreatment engagementRelated treatmentsHealthcare outcomesTrialsWomen
2021
A scoping review of person and family engagement in the context of multiple chronic conditions
Vick J, Wolff J. A scoping review of person and family engagement in the context of multiple chronic conditions. Health Services Research 2021, 56: 990-1005. PMID: 34363217, PMCID: PMC8515220, DOI: 10.1111/1475-6773.13857.Peer-Reviewed Original ResearchConceptsMultiple chronic conditionsConceptual model of engagementFamily engagementModel of engagementElements of self-managementChanges to care deliveryReview of reviewsBarriers to engagementInvolvement of familiesArticles meeting criteriaIndividual-level strategiesCare deliveryEngagement interventionsChronic conditionsSelf-managementFull-text considerationVulnerable populationsMeeting criteriaReview typesAreas of emphasisReview definitionsPersonsEngagementFamilyDecision makingPatient characteristics associated with the successful transition to virtual care: Lessons learned from the first million patients
Zachrison K, Yan Z, Sequist T, Licurse A, Tan-McGrory A, Erskine A, Schwamm L. Patient characteristics associated with the successful transition to virtual care: Lessons learned from the first million patients. Journal Of Telemedicine And Telecare 2021, 29: 621-631. PMID: 34120506, DOI: 10.1177/1357633x211015547.Peer-Reviewed Original ResearchConceptsVirtual participantsVirtual participationBehavioral health visitsVirtual carePatient characteristicsHealth visitsInternet accessElectronic health record dataVideoNon-Hispanic black raceLarge integrated health systemHealth record dataAmbulatory care patientsIntegrated health systemVisit frequencyUse of telehealthOutcomes of interestPatient portalsAmbulatory visitsCare patientsBlack raceVisit typeVulnerable patientsCOVID patientsLimited English proficiencyAssociation between 30-day readmission rates and health information technology capabilities in US hospitals
Elysee G, Yu H, Herrin J, Horwitz LI. Association between 30-day readmission rates and health information technology capabilities in US hospitals. Medicine 2021, 100: e24755. PMID: 33663091, PMCID: PMC7909153, DOI: 10.1097/md.0000000000024755.Peer-Reviewed Original ResearchConceptsRisk-standardized readmission ratesHealth IT capabilitiesLower readmission riskReadmission riskReadmission ratesHealth information technologyElectronic health recordsHospital dischargeRetrospective cross-sectional studyU.S. acute care hospitalsHealth recordsAcute care hospitalsCross-sectional studyFragmentation of careHospital-level risk-standardized readmission ratesOne-point increaseHospital Compare websiteHealth information technology capabilitiesCare hospitalOutcome measuresOutpatient providersUS hospitalsCare deliveryPatient accessClinical stakeholdersImpact of Pre-visit Contextual Data Collection on Patient-Physician Communication and Patient Activation: a Randomized Trial
Holt J, Cusatis R, Winn A, Asan O, Spanbauer C, Williams J, Flynn K, Somai M, Talsma A, Laud P, Makoul G, Crotty B. Impact of Pre-visit Contextual Data Collection on Patient-Physician Communication and Patient Activation: a Randomized Trial. Journal Of General Internal Medicine 2021, 36: 3321-3329. PMID: 33559067, PMCID: PMC8606508, DOI: 10.1007/s11606-020-06583-7.Peer-Reviewed Original ResearchMeSH KeywordsCommunicationData CollectionHumansPatient ParticipationPhysician-Patient RelationsPhysiciansConceptsPatient Activation MeasurePatient activationCommunication Assessment ToolPrimary care settingPatient-provider communicationKey ResultsA totalPatient-physician communicationHealth care disparitiesElectronic health recordsTreat principlePAM scoresResultsA totalCare settingsMAIN OUTCOMECare disparitiesITT resultsPatientsPatient communicationFacilitated enrollmentCAT itemsHealth recordsActivation MeasureTreatment effectsOutcomesActivation
2020
Cognitively Impaired Older Persons' and Caregivers' Perspectives on Dementia‐Specific Advance Care Planning
Fried TR, Cohen AB, Harris JE, Moreines L. Cognitively Impaired Older Persons' and Caregivers' Perspectives on Dementia‐Specific Advance Care Planning. Journal Of The American Geriatrics Society 2020, 69: 932-937. PMID: 33216955, PMCID: PMC8300881, DOI: 10.1111/jgs.16953.Peer-Reviewed Original Research
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