Abstract
>Goal-concordant care is a priority outcome for palliative care research, yet the
field lacks consensus on optimal methods for measurement. We sought to 1) categorize methods used to measure goal-concordant care, and 2) discuss strengths
and limitations of each method using empirical examples from palliative care research.
We categorized measurement methods for goal-concordant care. We identified empirical
examples of each method to illustrate the strengths, limitations, and applicability
of each method to relevant study designs. We defined four methods used to measure
goal-concordant care: 1) Patient- or Caregiver-Reported, 2) Caregiver-Reported After
Death, 3) Concordance in Longitudinal Data, and 4) Population-Level Indicators. Patient
or caregiver-reported goal-concordant care draws on strengths of patient-reported
outcomes, and can be captured for multiple aspects of treatment; these methods are
subject to recall bias or family-proxy bias. Concordance in longitudinal data is optimal
when a treatment preference can be specifically and temporally linked to actual treatment;
the method is limited to common life-sustaining treatment choices and validity may
be affected by temporal variation between preference and treatment. Population-level
indicators allow pragmatic research to include large populations; its primary limitation
is the assumption that preferences held by a majority of persons should correspond
to patterns of actual treatment in similar populations. Methods used to measure goal-concordant
care have distinct strengths and limitations, and methods should be selected based
on research question and study design. Existing methods could be improved, yet a future
gold standard is unlikely to suit all research designs.
Key Words
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Article info
Publication history
Published online: March 02, 2021
Accepted:
February 23,
2021
Identification
Copyright
© 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
