"There has to be more caring": patient and care partner experiences of the disclosure of amyloid-β PET scan results.

Elyse Couch, Wenhan Zhang, Emmanuelle Belanger, Megan Shepherd-Banigan, Nicole DePasquale, Courtney H Van Houtven, Emily A Gadbois, Terrie Wetle
Author Information
  1. Elyse Couch: Center for Gerontology and Healthcare Research, Brown University School of Public Health, Providence, RI, USA.
  2. Wenhan Zhang: Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA.
  3. Emmanuelle Belanger: Center for Gerontology and Healthcare Research, Brown University School of Public Health, Providence, RI, USA.
  4. Megan Shepherd-Banigan: Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA. ORCID
  5. Nicole DePasquale: Division of General Internal Medicine, Duke University School of Medicine, Durham, NC, USA.
  6. Courtney H Van Houtven: Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA.
  7. Emily A Gadbois: Center for Gerontology and Healthcare Research, Brown University School of Public Health, Providence, RI, USA.
  8. Terrie Wetle: Center for Gerontology and Healthcare Research, Brown University School of Public Health, Providence, RI, USA.

Abstract

OBJECTIVES: To explore patient and care partner experiences of receiving an amyloid scan result, with a focus on how clinician disclosure practices influenced patient and care partner emotional responses to the scan result and/or diagnosis.
METHODS: Semi-structured interviews with 38 people with mild cognitive impairment or dementia and 62 care partners who experienced the disclosure of results from an amyloid PET scan as part of the CARE-IDEAS study. We used thematic analysis to analyze interview transcripts.
RESULTS: We identified four aspects of the disclosure process that could influence patient and care partner emotional experiences of the scan result/diagnosis: (1) mode of delivery, (2) presence of a care partner, (3) clarity of the scan result explanation, and (4) discussion of post-scan treatment and support options.
CONCLUSIONS: Emotional experiences of an amyloid scan result can vary depending on how results are communicated. These findings support previous efforts to develop standard disclosure protocols. Scan results should be delivered in person with the care partner present. Clinicians should give a clear explanation of the result and its implications in an empathetic manner. Options for treatment and support should be discussed for all patients.

Keywords

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Grants

  1. K01 AG070284/NIA NIH HHS
  2. P30 AG028716/NIA NIH HHS
  3. R01 AG053934/NIA NIH HHS
  4. T32 HS000011/AHRQ HHS

MeSH Term

Humans
Male
Female
Aged
Cognitive Dysfunction
Positron-Emission Tomography
Caregivers
Aged, 80 and over
Dementia
Amyloid beta-Peptides
Middle Aged
Disclosure
Qualitative Research
Emotions

Chemicals

Amyloid beta-Peptides

Word Cloud

Created with Highcharts 10.0.0carescanpartnerdisclosureresultpatientexperiencesresultsamyloidPETsupportemotionaldementiaexplanationtreatmentOBJECTIVES:explorereceivingfocusclinicianpracticesinfluencedresponsesand/ordiagnosisMETHODS:Semi-structuredinterviews38peoplemildcognitiveimpairment62partnersexperiencedpartCARE-IDEASstudyusedthematicanalysisanalyzeinterviewtranscriptsRESULTS:identifiedfouraspectsprocessinfluenceresult/diagnosis:1modedelivery2presence3clarity4discussionpost-scanoptionsCONCLUSIONS:EmotionalcanvarydependingcommunicatedfindingspreviouseffortsdevelopstandardprotocolsScandeliveredpersonpresentCliniciansgiveclearimplicationsempatheticmannerOptionsdiscussedpatients"Therecaring":amyloid-βAlzheimer’sdiseaseAmyloidscansMCIbiomarkers

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