Patient Activation and Palliative Care among Hispanics/Latinos with Metastatic Cancer
Project Number5K01CA258955-04
Contact PI/Project LeaderMORENO, PATRICIA INGRID
Awardee OrganizationUNIVERSITY OF MIAMI SCHOOL OF MEDICINE
Description
Abstract Text
Robust evidence demonstrates that early integration of palliative care in patients with metastatic cancer improves
outcomes throughout the disease course by reducing symptom burden and increasing health-related quality of
life (HRQoL) and satisfaction with care. Early palliative care also increases hospice enrollment and reduces
aggressive treatments and admissions to the ED and ICU at the end of life. Early integration of palliative care
concurrently with disease-modifying treatments in patients with metastatic cancer is now recommended by the
American Society of Clinical Oncology and National Comprehensive Cancer Center Network. However, most
patients still only receive palliative care late in the disease continuum, at or near end of life, and significant
disparities persist in access to palliative care. Hispanic/Latino patients with metastatic cancer are less likely to
receive palliative care and have worse HRQoL and symptom burden than non-Hispanic/Latino White patients.
Hispanics/Latinos also are more likely to experience significant challenges to patient activation, including low
health literacy, language barriers, and structural and perceived discrimination. Little is known about how to
effectively activate patients and families so that they are empowered participants in conversations about
palliative care and no previous study has developed a patient activation intervention for Hispanics/Latinos with
metastatic cancer. The overarching goal of this proposal is to: a) identify barriers and facilitators to patient
activation in Hispanic/Latino patients with metastatic cancer, and; b) develop an individualized, culturally-adapted
intervention that increases patient activation and facilitates early integration of palliative care. We will use an
innovative approach that embeds our intervention within the healthcare system and incorporates EHR-integrated
systematic symptom monitoring. This approach allows us to tailor our patient activation intervention based on
patients’ symptom profile and to help patients and providers center discussions of palliative care on patients’
unique care needs. In order to increase patients’ preparedness and engagement in conversations about palliative
care, we will use a web-based platform to deliver a psychoeducational resource that provides accessible, easy-
to-understand information about palliative care (individualized based on symptom profile) and patient activation
tips. The aims of this mixed-methods study are: Aim 1) identify barriers and facilitators to patient activation and
early integration of palliative care through patient and provider focus groups (N=20 each); Aim 2) create an
individualized, culturally-adapted patient activation intervention and conduct patient usability testing (N=10); and
Aim 3) evaluate the effect of our intervention on proximal outcomes in the early phases of palliative care
introduction and referral, including HRQoL, patient-provider communication, shared decision-making, and
beliefs/attitudes regarding palliative care (N=50). The impact of this study will be to empower Hispanic/Latino
patients in conversations about palliative care and to develop a novel patient activation intervention that can be
tested in a future, full-scale randomized controlled trial.
Public Health Relevance Statement
PROJECT NARRATIVE
The goal of this proposal is to increase patient activation and facilitate early integration of palliative care among
English- and Spanish-speaking Hispanic/Latino patients with metastatic cancer. Using a mixed-methods
approach, patient and provider focus groups and usability testing will inform the development and cultural
adaptation of a patient activation intervention that is individualized using EHR-integrated symptom monitoring. A
pilot randomized controlled trial will evaluate acceptability and preliminary effects of patient activation
intervention on proximal outcomes in the early phases of palliative care introduction and referral (e.g., health-
related quality of life, patient-provider communication, shared decision-making, beliefs/attitudes regarding
palliative care).
NIH Spending Category
No NIH Spending Category available.
Project Terms
Admission activityAmerican Society of Clinical OncologyAttitudeBeliefBiological ModelsCancer PatientCaringClient satisfactionClinical TrialsCommunicationComprehensive Cancer CenterConfusionDevelopmentDiagnosisDiseaseDisparityDisseminated Malignant NeoplasmDocumentationEnrollmentEthnic OriginFamilyFocus GroupsFutureGoalsHealth systemHealthcare SystemsHispanicHispanic PopulationsHospitalsInterventionLanguageLatinoLatino PopulationLearningMethodologyMethodsModelingMonitorNot Hispanic or LatinoOncologyOutcomePalliative CareParticipantPatient CarePatient-Centered CarePatientsPhasePhysiciansPositioning AttributeProcessProviderRaceRandomized, Controlled TrialsReadinessRecommendationResearchResourcesSocioeconomic StatusSpanish/EnglishStandardizationSymptom BurdenSymptomsSystemTestingTrainingTrustUniversitiesadvanced directiveaggressive therapycare providersculturally appropriate interventiondesigneffectiveness-implementation RCTeffectiveness/implementation hybridempowermentend of lifeexperiencehealth related quality of lifehospice environmenthospice utilizationimprovedimproved outcomeinformation gatheringinnovationintervention effectlow health literacynovelpatient populationpatient-clinician communicationperceived discriminationpsychoeducationrecruitreduce symptomssatisfactionshared decision makingskillsstandard of caresymptom managementtherapy developmentusabilityweb platform
No Sub Projects information available for 5K01CA258955-04
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