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

Abstract

IntroductionThe 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.MethodsIn 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).ResultsVia 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.ConclusionCaregivers 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.Electronic supplementary materialThe online version of this article (doi:10.1007/s40120-016-0049-1) contains supplementary material, which is available to authorized users.

What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health‐care professionals? A systematic review

“…Six studies included explicit prioritization of outcomes through ranking or survey responses from stakeholders [11], [22], [24], [27], [34], [38]; the rest included relevant material in the form of quotations and themes from interviews or focus groups that was used to infer the importance of outcomes from stakeholder perspectives [10], [12], [21], [25], [26], [28], [29], [30], [31], [32], [33], [35], [37], [39], [40], [41], [42], [43].…”

“…In one study, caregivers of patients with MCI ranked patient QoL as the most important outcome from a predetermined list of twelve outcomes [11].…”

Everyday Impact of Cognitive Interventions in Mild Cognitive Impairment: a Systematic Review and Meta-Analysis

“…Despite this, most articles appear to continue to relegate these daily impact measures to “secondary outcomes” or “other treatment targets” behind the primary cognitive outcomes. This is unfortunate, as individuals with MCI and their partners have been shown to report quality of life and self-efficacy as the most important outcomes they want to see addressed in cognitive intervention programs (Barrios et al 2016). …”

Providing Online Memory Interventions for Older Adults: A Critical Review and Recommendations for Development

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