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Patient-reported outcome measures for chronic obstructive pulmonary disease : the exclusion of people with low literacy skills and learning disabilities.

Jahagirdar D, Kroll T, Ritchie K, Wyke S - Patient (2013)

Bottom Line: This potential exclusion raises concerns about whether these groups will be able to use these measures and participate in quality improvement practices.None of the studies mentioned efforts to include people with low literacy skills or learning disabilities.Without effort to improve inclusion, unequal quality improvement practices may become embedded in the health system.

View Article: PubMed Central - PubMed

Affiliation: Institute of Health and Wellbeing, College of Social Science, University of Glasgow, Glasgow, UK.

ABSTRACT

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.

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.

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.

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Related in: MedlinePlus

Phase II review flow chart
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Related In: Results  -  Collection


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Fig2: Phase II review flow chart

Mentions: We reviewed 108 abstracts and included 53 papers in Phase I. We identified six new PROMs in Phase II and reviewed 67 abstracts, eventually including 17 papers. The processes for Phase I and Phase II are summarized in Figs. 1 and 2, respectively. In addition to the CRQ, SGRQ, EQ-5D, SF-36, CAT, and EXACT tools, the new PROMs identified and included were:Fig. 1


Patient-reported outcome measures for chronic obstructive pulmonary disease : the exclusion of people with low literacy skills and learning disabilities.

Jahagirdar D, Kroll T, Ritchie K, Wyke S - Patient (2013)

Phase II review flow chart
© Copyright Policy - OpenAccess
Related In: Results  -  Collection

Show All Figures
getmorefigures.php?uid=PMC3585908&req=5

Fig2: Phase II review flow chart
Mentions: We reviewed 108 abstracts and included 53 papers in Phase I. We identified six new PROMs in Phase II and reviewed 67 abstracts, eventually including 17 papers. The processes for Phase I and Phase II are summarized in Figs. 1 and 2, respectively. In addition to the CRQ, SGRQ, EQ-5D, SF-36, CAT, and EXACT tools, the new PROMs identified and included were:Fig. 1

Bottom Line: This potential exclusion raises concerns about whether these groups will be able to use these measures and participate in quality improvement practices.None of the studies mentioned efforts to include people with low literacy skills or learning disabilities.Without effort to improve inclusion, unequal quality improvement practices may become embedded in the health system.

View Article: PubMed Central - PubMed

Affiliation: Institute of Health and Wellbeing, College of Social Science, University of Glasgow, Glasgow, UK.

ABSTRACT

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.

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.

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.

Show MeSH
Related in: MedlinePlus