Priority of Treatment Outcomes for Caregivers and Patients with Mild Cognitive Impairment: Preliminary Analyses

Polaris González Barrios, Ricardo Pabón González, Sherrie M. Hanna, Angela M. Lunde, Julie A Fields, Dona E Locke, Glenn E. Smith

Research output: Contribution to journalArticle

12 Scopus citations

Abstract

Introduction: The patient-centered movement advocates for greater attention to the outcomes that matter most to patients and their families. In neurodegenerative disease, determination of patient and caregiver priorities has received scant attention in part because dementia patients are deemed unreliable reporters. However, people with mild cognitive impairment (MCI) likely retain capacity to report their preferences. Methods: In two separate MCI cohorts, we conducted preliminary analyses of patient and caregiver priorities among seven patient and five caregiver outcomes of the HABIT® Healthy Action to Benefit Independence & Thinking program (Mayo Clinic, Rochester, MN, USA). Results: Via interview and paper-and-pencil reporting both patient and caregiver respondents’ ranked patient and caregiver quality of life and patient self-efficacy as highest priorities, ranking them ahead of patient and caregiver mood, patient functional status, patient distressing behaviors and caregiver burden. Patients and caregivers tended to value the outcomes for their loved ones higher than their own outcomes. Conclusion: Caregivers appeared to be reasonable, but not perfect, proxies for patient reports. Additional research with larger cohorts and a more comprehensive range of outcomes is needed.

Original languageEnglish (US)
Pages (from-to)183-192
Number of pages10
JournalNeurology and Therapy
Volume5
Issue number2
DOIs
StatePublished - Dec 1 2016

Keywords

  • Alzheimer’s disease
  • Caregivers
  • Mild cognitive impairment
  • Patient preference
  • Quality of life

ASJC Scopus subject areas

  • Clinical Neurology
  • Neurology

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