Page 32 - Let them speak Towards a patient reported outcome measure set for

Chapter 2
Box 1. Definitions and abbreviations of commonly used terminology with regard to outcomes and
outcome measurement instruments.12,15,18,19
Definition Abbreviation Explanation
Clinical outcome
assessment*
COA Outcome Outcome
measurement
instrument
Patient-reported
outcome
PRO Patient-reported
outcome measure*
PROM A clinical outcome assessment describes or reflects how
a person feels, functions, or survives and can be reported
by the affected individual, a non-clinical observer
(such as parent), a health care provider, or through
performance of an activity or task.
An outcome refers to a construct or domain. In the
context of a clinical trial, it refers to what is being
measured on trial participants to examine the effect of
exposure to a health intervention (e.g., anxiety).
An outcome measurement instrument specifically refers
to how the outcome is being measured. It is a tool to
measure a quality or quantity of the outcome. It can be
used to identify meaningful change for the individual,
evaluate the effect of interventions, demonstrate
the impact and value of interventions, identify areas
for improvement, and benchmark against other
interventions. Power calculations are often based on
the chosen primary outcome measure. In literature, the
term outcome measure has often been inconsistently
and interchangeably used to refer to both the outcome
and outcome measurement instrument; we consider
using ‘outcome measure’ as an abbreviation of ‘outcome
measure instrument’.
A type of clinical outcome assessment, based on a
report that comes directly from the affected individual
about the status of the health condition.
Instrument or tool utilized to measure PROs to evaluate
the affected individuals’ health status from their
perspective. For individuals with an intellectual disability
who are not able to complete a measure, a PROM can
also be a proxy-report provided that it is someone who
knows the affected individual well and fills out the PROM
from the affected individual’s perspective.
Clinician-reported
outcome*
ClinRO Performance
outcome*
PerfO Observer-reported
outcome*
ObsRO A type of clinical outcome assessment, based on
a report that comes from a trained health care
professional after observation of a patient’s health
condition.
A type of clinical outcome assessment, based on
standardized task(s) actively undertaken by an affected
individual according to instructions.
A type of clinical outcome assessment, based on a
report of observable signs, events or behaviors related
to an affected individual’s health condition by someone
other than the affected individual or a health care
professional, such as a parent, teacher or caregiver.
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