2024
Difficult to Treat Depression: Focus on Approach, Algorithms, and Access.
Karp J, Brinton R, Fournier J, Harding L, Jha M, Lenze E, Mathew S, Meltzer-Brody S, Mohr D, Riva-Posse P, Wiechers I, Williams N. Difficult to Treat Depression: Focus on Approach, Algorithms, and Access. The Journal Of Clinical Psychiatry 2024, 85 PMID: 39630090, DOI: 10.4088/jcp.psprmdd2408ah.Peer-Reviewed Original ResearchConceptsTreating depressionSpectrum of clinical severityTreatment of depressionEvolving treatment landscapeDepartment of PsychiatryBurden of depressionOral pharmacotherapyTreatment landscapeAdult patientsClinical severityCommunity health agenciesDepressionIncreased prevalenceHealth care systemPatientsDepression carePsychiatric workforcePsychiatryPatient advocatesCare systemTherapeutic engineeringHealth agenciesTelemedicine platformDo IRemissionAdvancing patient-centric care: integrating patient reported outcomes for tolerability assessment in early phase clinical trials – insights from an expert virtual roundtable
Yap C, Aiyegbusi O, Alger E, Basch E, Bell J, Bhatnagar V, Cella D, Collis P, Dueck A, Gilbert A, Gnanasakthy A, Greystoke A, Hansen A, Kamudoni P, Kholmanskikh O, King-Kallimanis B, Krumholz H, Minchom A, O'Connor D, Petrie J, Piccinin C, Rantell K, Rauz S, Retzer A, Rizk S, Wagner L, Sasseville M, Seymour L, Weber H, Wilson R, Calvert M, Peipert J. Advancing patient-centric care: integrating patient reported outcomes for tolerability assessment in early phase clinical trials – insights from an expert virtual roundtable. EClinicalMedicine 2024, 76: 102838. PMID: 39386161, PMCID: PMC11462221, DOI: 10.1016/j.eclinm.2024.102838.Peer-Reviewed Original ResearchEarly phase trialsPatient-reported outcomesPhase trialsInvestigator-reported adverse eventsEarly phase clinical trialsTolerability assessmentsPhase clinical trialsIntegration of patient-reported outcomesAdverse eventsClinical trialsPatient-centred careDosing decisionsDiverse clinical areasTherapy risksLaboratory assessmentPatientsTrialsPatient advocatesClinical areasOutcomesSafety alertsPharmaceutical representativesVirtual roundtableRiskSupportive care 2030 movement: towards unifying ambitions for global excellence in supportive cancer care—an international Delphi study
Chan R, Knowles R, Ashbury F, Bowen J, Chan A, Chin M, Olver I, Taylor C, Tinianov S, Alberti P, Bossi P, Brito-Dellan N, Cooksley T, Crawford G, Dixit N, Fitch M, Freedman J, Ginex P, Hart N, Hertz D, Jefford M, Koczwara B, Naito T, Orsey A, Ruhlmann C, Tsoukalas N, van den Hurk C, Van Sebille Y, Wardill H, Scotte F, Lustberg M, Chairs M. Supportive care 2030 movement: towards unifying ambitions for global excellence in supportive cancer care—an international Delphi study. EClinicalMedicine 2024, 76: 102825. PMID: 39309723, PMCID: PMC11415959, DOI: 10.1016/j.eclinm.2024.102825.Peer-Reviewed Original ResearchSupportive cancer careCancer careMultinational Association of Supportive Care in CancerPatient advocatesComprehensive survivorship careSupport care deliveryOptimal quality of lifeInternational Delphi studyTeam-based approachModified Delphi methodologyQuality of lifeSurvivorship careSupportive carePalliative careCare deliveryCare developmentSelf-ManagementIndividualized carePatient educationGuideline developmentDelphi roundsCancer outcomesClinical servicesMultinational AssociationPerson-centered approachPatient Perspectives on Social and Identity Factors Affecting Multiple Myeloma Care: Barriers and Opportunities
Neparidze N, Godara A, Lin D, Le H, Fixler K, Shea L, Everson S, Brittle C, Brunisholz K. Patient Perspectives on Social and Identity Factors Affecting Multiple Myeloma Care: Barriers and Opportunities. Healthcare 2024, 12: 1587. PMID: 39201146, PMCID: PMC11354118, DOI: 10.3390/healthcare12161587.Peer-Reviewed Original ResearchDisease journeyHealth care providersImprove patient supportCare providersPatient prioritiesPatient advocatesPatient perspectiveMedical appointmentsMultiple myelomaPatient supportMultiple barriersInformed treatment decisionsPrioritized needsMultidisciplinary teamTreatment adherenceDisease burdenFocus group researchComprehensive supportImprove outcomesSocial workersTreatment decisionsInsurance optionsMixing methodBurdenSupportMulti-stakeholder, intentional outreach for improving representative recruitment in Pragmatica–Lung (SWOG S2302).
Carrizosa D, Miao J, Reckamp K, Dragnev K, Hesketh P, Iams W, Henick B, Czerlanis C, DeSanto F, Sundstrom J, Johnson J, Gansauer L, Groller T, Redman M, Herbst R, Gray J. Multi-stakeholder, intentional outreach for improving representative recruitment in Pragmatica–Lung (SWOG S2302). Journal Of Clinical Oncology 2024, 42: 11019-11019. DOI: 10.1200/jco.2024.42.16_suppl.11019.Peer-Reviewed Original ResearchRecruitment planTrial designClinical trial enrollmentAdvanced/metastatic NSCLCAccrual rateStandard therapyPatient education materialsImprove community awarenessPatient accrual rateSWOGClinical trialsTrial enrollmentVA sitesApproaches to trial designPatient advocatesPatientsDecrease barriersMinority accrualRecruitment strategiesAdvocacy partnersLatinx patientsCommunity awarenessTrialsEducational materialsEnrollment information
2023
EGFR Mutations Are Not All the Same: the Importance of Biomarker Testing in Non-small Cell Lung Cancer (NSCLC)—A Podcast Discussion Between Patients and Oncologists
Liu S, Elkins I, Feldman J, Goldberg S. EGFR Mutations Are Not All the Same: the Importance of Biomarker Testing in Non-small Cell Lung Cancer (NSCLC)—A Podcast Discussion Between Patients and Oncologists. Oncology And Therapy 2023, 11: 419-431. PMID: 37750968, PMCID: PMC10673799, DOI: 10.1007/s40487-023-00242-7.Peer-Reviewed Original ResearchNon-small cell lung cancerEGFR-mutant non-small cell lung cancerCell lung cancerBiomarker testingLung cancerEGFR mutationsTreatment landscapeNon-smallIndividual patientsPatientsCancerBiomarkersHealthcare professionalsOncologistsBiomarker informationTreatmentPatient perspectiveBiopsyEGFRTherapyPatient advocatesHighlights From the Annual Meeting of the American Epilepsy Society 2022
Valencia I, Alexander A, Andrade D, Arevalo-Astrada M, Rubiños C, Auer N, Bainbridge J, Baxendale S, Bartolomei F, Becker D, Berg A, Bernasconi A, Bernasconi N, Bernhardt B, Bhatnagar S, Blümcke I, Blumenfeld H, Buchanan G, Burdette D, Burneo J, Busch R, Chauvel P, Chin J, Clifford L, Conner K, Cook M, Conway J, Diaz-Arastia R, Drees C, French J, Ganguly T, Gelfand M, Glauser T, Gleichgerrcht E, Goldman A, Gonzalez-Martinez J, Gotman J, Grinspan Z, Guilfoyle S, Gupta G, Hammer M, Hartman A, Hentges K, Hogan R, Huh L, Hyslop A, Jobst B, Josephson C, Kelley S, Knupp K, Koepp M, Kothare S, Krook-Magnuson E, Kwasa J, La Vega-Talbott M, Lam A, Lee J, Lowenstein D, Maturu S, Mayor L, McDonald C, McKee H, McKhann G, Meador K, Mefford H, Michael E, Mikati M, Millichap J, Mitchell J, Myers L, Naritoku D, Neville K, Noebels J, O’Brien T, Oluigbo C, Patel A, Pavlova M, T. Paz J, Pennell P, Perry M, Perucca P, Pitkänen A, Plueger M, Pugh M, Quigg M, Reddy S, Ryan C, Reynolds T, Sajatovic M, Santana-Gomez C, Schommer L, Schuele S, Shellhaas R, Shrey D, Singh R, Sperling M, Suleman S, Templer J, Thom M, Trinka E, Varadkar S, Velez-Ruiz N, Velíšková J, Voskobiynyk Y, Wagner J, Wagnon J, Waller C, Waller J, Wang Z, Welborn M, Wirrell E, Jobst B. Highlights From the Annual Meeting of the American Epilepsy Society 2022. Epilepsy Currents 2023 DOI: 10.1177/15357597231187227.Peer-Reviewed Original ResearchAnti-seizure medicationsPathophysiology of epilepsyPost-traumatic epilepsyTraumatic brain injuryDifferent disease statesMechanism of actionPrepandemic timesNumber of physiciansBrain injuryEpilepsy careSeizure generationEpilepsy comorbiditiesEpilepsyReproductive healthHealth professionalsPatient advocatesVirtual offeringSatellite symposiumDisease statesBasic science lecturesReimbursement policiesGroup sessionsSmall group sessionsSessionsSkills workshopsConsensus report of the 2021 National Cancer Institute neuroendocrine tumor clinical trials planning meeting
Singh S, Hope T, Bergsland E, Bodei L, Bushnell D, Chan J, Chasen B, Chauhan A, Das S, Dasari A, Del Rivero J, El-Haddad G, Goodman K, Halperin D, Lewis M, Lindwasser O, Myrehaug S, Raj N, Reidy-Lagunes D, Soares H, Strosberg J, Kohn E, Kunz P, Bergsland E, Beveridge T, Bodei L, Borek A, Brockman M, Bushnell D, Capala J, Chan J, Chasen B, Chauhan A, Das S, Dasari N, Davies-Venn C, Del Rivero J, Demaria S, Donoghue M, Eads J, El-Haddad G, Fielman N, Fishbein L, Gericke G, Goodman K, Halperin D, Hendifar A, Hicks R, Hobbs R, Hobday T, Hope T, Iyer R, Jaffe D, Kennedy A, Kohn E, Kulke M, Kunos C, Kunz P, Lewis M, Lin F, Lindwasser W, Mailman J, McDonald M, McEwan S, Myrehaug S, Nakasato A, Nothwehr S, Ou F, Padda S, Pavel M, Pilowa A, Raj N, Ramnaraign B, Reidy-Lagunes D, Rubinstein L, Saletan S, Shah M, Singh S, Soares H, Soulen M, Strosberg J, Untch B, Wahba M, Wong R, Yao J. Consensus report of the 2021 National Cancer Institute neuroendocrine tumor clinical trials planning meeting. Journal Of The National Cancer Institute 2023, 115: 1001-1010. PMID: 37255328, PMCID: PMC10483264, DOI: 10.1093/jnci/djad096.Peer-Reviewed Original ResearchConceptsPeptide receptor radionuclide therapyClinical trialsNeuroendocrine tumorsNeuroendocrine neoplasmsClinical trial recommendationsLiver-dominant diseaseReceptor radionuclide therapyTumor clinical trialsUse of dosimetryImmunotherapy combinationsTherapeutic optionsTreatment optionsGastroenteropancreatic NETsTrial recommendationsConsensus reportNew agentsInhibitor combinationsRadionuclide therapyPatient advocatesMultidisciplinary expertsOptimal sequencingTrialsTreatmentTherapyDiseaseDesign and development of a digital shared decision-making tool for stroke prevention in atrial fibrillation
Nunes J, Baykaner T, Pundi K, DeSutter K, Hills M, Mahaffey K, Sears S, Morin D, Lin B, Wang P, Stafford R. Design and development of a digital shared decision-making tool for stroke prevention in atrial fibrillation. JAMIA Open 2023, 6: ooad003. PMID: 36751465, PMCID: PMC9893868, DOI: 10.1093/jamiaopen/ooad003.Peer-Reviewed Original ResearchAtrial fibrillationStroke preventionSDM toolsAmerican Heart AssociationCommon cardiac arrhythmiaMultisite clinical trialAppropriate anticoagulationIschemic strokeAF patientsHeart AssociationTreatment acceptanceClinical trialsContent identificationTreatment outcomesClinician experienceHealth literacyCardiac arrhythmiasClinicians toolsPatientsPatient feedbackPatient advocatesDecision regretUser engagementPatient toolsInformation delivery
2022
Holy Simplicity: The Physician's Role in End-of-Life Conversations.
Williams JL, Doolittle B. Holy Simplicity: The Physician's Role in End-of-Life Conversations. The Yale Journal Of Biology And Medicine 2022, 95: 399-403. PMID: 36187416, PMCID: PMC9511947.Peer-Reviewed Original ResearchMelanoma central nervous system metastases: An update to approaches, challenges, and opportunities
Karz A, Dimitrova M, Kleffman K, Alvarez‐Breckenridge C, Atkins MB, Boire A, Bosenberg M, Brastianos P, Cahill DP, Chen Q, Ferguson S, Forsyth P, Oliva I, Goldberg SB, Holmen SL, Knisely JPS, Merlino G, Nguyen DX, Pacold ME, Perez‐Guijarro E, Smalley KSM, Tawbi HA, Wen PY, Davies MA, Kluger HM, Mehnert JM, Hernando E. Melanoma central nervous system metastases: An update to approaches, challenges, and opportunities. Pigment Cell & Melanoma Research 2022, 35: 554-572. PMID: 35912544, PMCID: PMC10171356, DOI: 10.1111/pcmr.13059.Peer-Reviewed Original ResearchConceptsMelanoma brain metastasesMBM patientsBrain metastasesCheckpoint inhibitor trialsCommon brain malignancyMelanoma Research FoundationDedicated clinical trialsRole of astrocytesNovel treatment approachesImmunotherapy trialsInhibitor trialsBrain malignanciesClinical trialsPatient outcomesBrain microenvironmentTreatment approachesPatient advocatesPatientsTrialsTherapeutic purposesMetabolic adaptationMetastasisCurrent standardTherapyRecent reportsAn Analysis of Risk-Assessment Driven Security Restraint Use during the Transport of Forensic Patients.
Wasser TD, Strockbine BA, Hauser LL, Mathew MA, Gay B, Smith HE, Dike CC. An Analysis of Risk-Assessment Driven Security Restraint Use during the Transport of Forensic Patients. The Journal Of The American Academy Of Psychiatry And The Law 2022, 50: 74-83. PMID: 35042737, DOI: 10.29158/jaapl.210050-21.Peer-Reviewed Original ResearchConceptsForensic hospitalState forensic hospitalForensic hospital patientsForensic psychiatric patientsRisk assessment toolHospital patientsRestraint useHigh riskPsychiatric patientsHospital staffPatientsPatient advocatesPatient transportationSignificant riskForensic patientsHospital administratorsTool correlateHospitalRiskThe importance of an early onset of migraine preventive disease control: A roundtable discussion
Gottschalk C, Basu A, Blumenfeld A, Torphy B, Marmura M, Pavlovic J, Dumas P, Lalvani N, Buse D. The importance of an early onset of migraine preventive disease control: A roundtable discussion. Cephalalgia Reports 2022, 5: 25158163221134593. DOI: 10.1177/25158163221134593.Peer-Reviewed Original ResearchEarly onsetDisease controlPreventive therapyMigraine activityAnti-calcitonin gene-related peptide monoclonal antibodyMigraine preventive therapyBurden of migrainePeptide monoclonal antibodyRoundtable of expertsMigraine preventionTreatment initiationPreventive benefitsClinical studiesTreatment expectationsClinical relevancePatientsDrug AdministrationPatient advocatesTherapy goalsHealthcare professionalsMonoclonal antibodiesRoundtable meetingPreventionGrey literatureProfessionals' perceptions
2021
The tale of TILs in breast cancer: A report from The International Immuno-Oncology Biomarker Working Group
El Bairi K, Haynes HR, Blackley E, Fineberg S, Shear J, Turner S, de Freitas JR, Sur D, Amendola LC, Gharib M, Kallala A, Arun I, Azmoudeh-Ardalan F, Fujimoto L, Sua LF, Liu SW, Lien HC, Kirtani P, Balancin M, El Attar H, Guleria P, Yang W, Shash E, Chen IC, Bautista V, Do Prado Moura JF, Rapoport BL, Castaneda C, Spengler E, Acosta-Haab G, Frahm I, Sanchez J, Castillo M, Bouchmaa N, Md Zin RR, Shui R, Onyuma T, Yang W, Husain Z, Willard-Gallo K, Coosemans A, Perez EA, Provenzano E, Ericsson PG, Richardet E, Mehrotra R, Sarancone S, Ehinger A, Rimm DL, Bartlett JMS, Viale G, Denkert C, Hida AI, Sotiriou C, Loibl S, Hewitt SM, Badve S, Symmans WF, Kim RS, Pruneri G, Goel S, Francis PA, Inurrigarro G, Yamaguchi R, Garcia-Rivello H, Horlings H, Afqir S, Salgado R, Adams S, Kok M, Dieci MV, Michiels S, Demaria S, Loi S. The tale of TILs in breast cancer: A report from The International Immuno-Oncology Biomarker Working Group. Npj Breast Cancer 2021, 7: 150. PMID: 34853355, PMCID: PMC8636568, DOI: 10.1038/s41523-021-00346-1.Peer-Reviewed Original ResearchTumor-infiltrating lymphocytesImmune checkpoint inhibitorsInternational Immuno-Oncology Biomarker Working GroupBiomarker Working GroupBreast cancerTriple-negative breast cancerSubgroup of womenDeath-1Middle-income countriesPD-L1TIL analysisCytotoxic treatmentCancer settingPrognostic biomarkerClinical utilityClinical validityPatient advocatesWorking GroupClinical utilizationModern oncologyPatientsLymphocytesCancerFuture approachesImmunotherapyGenetic risk assessment for hereditary renal cell carcinoma: Clinical consensus statement
Bratslavsky G, Mendhiratta N, Daneshvar M, Brugarolas J, Ball MW, Metwalli A, Nathanson KL, Pierorazio PM, Boris RS, Singer EA, Carlo MI, Daly MB, Henske EP, Hyatt C, Middleton L, Morris G, Jeong A, Narayan V, Rathmell WK, Vaishampayan U, Lee BH, Battle D, Hall MJ, Hafez K, Jewett MAS, Karamboulas C, Pal SK, Hakimi AA, Kutikov A, Iliopoulos O, Linehan WM, Jonasch E, Srinivasan R, Shuch B. Genetic risk assessment for hereditary renal cell carcinoma: Clinical consensus statement. Cancer 2021, 127: 3957-3966. PMID: 34343338, PMCID: PMC8711633, DOI: 10.1002/cncr.33679.Peer-Reviewed Original ResearchConceptsRenal cell carcinomaGenetic risk assessmentHereditary renal cell carcinomaCell carcinomaConsensus statementMedical oncologistsMultidisciplinary panelPatient advocatesConsensus questionsClinical consensus statementHereditary kidney cancerMultigene panel testingClinical geneticistsFamily history criteriaPaucity of guidelinesUniform consensusStrong hereditary componentCurrent opinionGenetic counselorsMultifocal diseaseConsensus panelSpecific histologyKidney cancerRisk assessmentPanel testingReport of National Brain Tumor Society roundtable workshop on innovating brain tumor clinical trials: building on lessons learned from COVID-19 experience
Lee E, Selig W, Meehan C, Bacha J, Barone A, Bloomquist E, Chang S, de Groot J, Galanis E, Hassan I, Kalidas C, Khasraw M, Kvedar J, Lassman A, Puduvalli V, Sahebjam S, Schwamm L, Tamir S, Welch M, Yung W, Zadeh G, Arons D, Wen P. Report of National Brain Tumor Society roundtable workshop on innovating brain tumor clinical trials: building on lessons learned from COVID-19 experience. Neuro-Oncology 2021, 23: 1252-1260. PMID: 33822177, PMCID: PMC8083574, DOI: 10.1093/neuonc/noab082.Peer-Reviewed Original ResearchConceptsTumor clinical trialsBrain tumor clinical trialsClinical trialsNational Brain Tumor SocietyCOVID-19 experienceClinical trial designUse of telemedicineNational Cancer InstituteCommunity cliniciansBrain tumor communityNeuro-oncologyTrial designCancer InstituteUS FoodDrug AdministrationPatient advocatesClinical research organizationsTrialsCOVID-19Potential long-term impactLong-term impactReportPatientsCliniciansAdministration
2020
Ensuring Patient Protections When Tapering Opioids: Consensus Panel Recommendations
Covington E, Argoff C, Ballantyne J, Cowan P, Gazelka H, Hooten W, Kertesz S, Manhapra A, Murphy J, Stanos S, Sullivan M. Ensuring Patient Protections When Tapering Opioids: Consensus Panel Recommendations. Mayo Clinic Proceedings 2020, 95: 2155-2171. PMID: 33012347, DOI: 10.1016/j.mayocp.2020.04.025.Peer-Reviewed Original ResearchConceptsLong-term opioid therapyOpioid therapyConsensus panel recommendationsOngoing pain managementSerious withdrawal symptomsSerious adverse outcomesDifferent patient populationsHealth care professionalsLong-term useOpioid reductionOpioid taperTapering opioidsUncontrolled painPain cliniciansPain managementAdverse outcomesCertain patientsPatient populationWithdrawal symptomsPrimary careCare professionalsPatient advocatesOpioidsIllicit substancesBeneficial effectsAn instrument for assessing the quality of informed consent documents for elective procedures: development and testing
Spatz ES, Suter LG, George E, Perez M, Curry L, Desai V, Bao H, Geary LL, Herrin J, Lin Z, Bernheim SM, Krumholz HM. An instrument for assessing the quality of informed consent documents for elective procedures: development and testing. BMJ Open 2020, 10: e033297. PMID: 32434933, PMCID: PMC7247404, DOI: 10.1136/bmjopen-2019-033297.Peer-Reviewed Original Research
2019
Addressing the dichotomy between individual and societal approaches to personalised medicine in oncology
Salgado R, Solit DB, Rimm DL, Bogaerts J, Canetta R, Lively T, Lyerly K, Span PN, Bateman-House A, Makady A, Bergmann L, Nagai S, Smith C, Robson M, Savage M, Voest E, Sweeney C, Lambin P, Thomas M, Harris L, Lacombe D, Massard C, Bernards R, Bogaerts J, Canetta R, Sullivan R, Tejpar S, Lukinova N, Lyerly H, Moore H, Smith M, Yee L, DuBois R, Hahn W, Janne P, Solit D, Willman C, Rimm D, Bateman-House A, Makady A, Bergmann L, Nagai S, Thomas M, Cree I, Hegde P, Hopper S, Smith C, Robson M, Savage M, Voest E, Sweeney C, Ingelman-Sundberg M, Nichols G, Maignen F, Besse B, Swierzewski R, Lambin P, Kiermaier A, Lacombe D, Lively T, Massard C, Caliguri M, Velculescu V, Foggi P, Hahn W, Lukinova N, Salgado R, Golfinopoulos V. Addressing the dichotomy between individual and societal approaches to personalised medicine in oncology. European Journal Of Cancer 2019, 114: 128-136. PMID: 31060925, DOI: 10.1016/j.ejca.2019.03.025.Peer-Reviewed Original ResearchConceptsReal-world evidenceClinical trialsSystemic therapeutic interventionsNovel clinical trialsNovel trial designsCancer clinical researchComprehensive tumor profilingHealth care delivery systemTumor-derived DNAIndividual molecular profileCancer drug developmentGold standard approachPatient tumorsClinical utilityTrial designTherapeutic interventionsTumor profilingPatient advocatesClinical researchMolecular profileDrug developmentTrialsPhysician autonomyDelivery systemPatients
2018
A Novel Stakeholder Engagement Approach for Patient-centered Outcomes Research
Kim K, Khodyakov D, Marie K, Taras H, Meeker D, Campos H, Ohno-Machado L. A Novel Stakeholder Engagement Approach for Patient-centered Outcomes Research. Medical Care 2018, 56: s41-s47. PMID: 30074950, PMCID: PMC6143220, DOI: 10.1097/mlr.0000000000000790.Peer-Reviewed Original ResearchConceptsClinical Data Research NetworkPatient-centered outcomes researchEngagement of patientsOutcomes research studiesConditions of focusStakeholder advisory boardPatient-centered outcomes research studiesKawasaki diseaseHeart failurePatient advocatesPatientsClinical sitesOutcomes researchSignificant differencesHealth researchCliniciansResearch NetworkResearch prioritiesSetting of prioritiesEngagement strategiesAdvisory BoardFavorable opinionObesityEngagement principlesDisease
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