Patient-reported outcome measures for chronic obstructive pulmonary disease: the exclusion of people with low literacy skills and learning disabilities
<p>Background: Patient-reported outcome measures (PROMs)
are intended to reflect outcomes relevant to patients. They are
increasingly used for healthcare quality improvement. To
produce valid measures, patients should be involved in the
development process but it is unclear whether this usually
includes people with low literacy skills or learning disabilities.
This potential exclusion raises concerns about whether these
groups will be able to use these measures and participate in
quality improvement practices.</p>
<p>Methods: Taking PROMs for chronic obstructive pulmonary disease (COPD) as an exemplar condition, our review
determined the inclusion of people with low literacy skills and
learning disabilities in research developing, validating, and
using 12 PROMs for COPD patients. The studies included in
our review were based on those identified in two existing
systematic reviews and our update of this search.
Results People with low literacy skills and/or learning
disabilities were excluded from the development of
PROMs in two ways: explicitly through the participant
eligibility criteria and, more commonly, implicitly through
recruitment or administration methods that would require
high-level reading and cognitive abilities. None of the
studies mentioned efforts to include people with low literacy skills or learning disabilities.</p>
<p>Conclusion: Our findings suggest that people with low
literacy skills or learning disabilities are left out of the
development of PROMs. Given that implicit exclusion was
most common, researchers and those who administer
PROMs may not even be aware of this problem. Without
effort to improve inclusion, unequal quality improvement
practices may become embedded in the health system.</p>