ReviewThe patient2013
Patient-reported outcome measures for chronic obstructive pulmonary disease : the exclusion of people with low literacy skills and learning disabilities.
Review in The patient, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
17 citing papers in PubMed, 1 synthesis or guideline pooled it, 34 citations in OpenAlex.
- Functional Status Assessment of COPD Based on Ability to Perform Daily Living Activities: A Systematic Review of Paper and Pencil Instruments.Global journal of health science · 2015Pooled it
- Personalizing Functional Assessment in Chronic Obstructive Pulmonary Disease: A Validation Study of the Patient-Specific Functional Scale.Journal of clinical medicine · 2025Article
- Health status, respiratory symptom and dyspnea trajectories in subjects with chronic obstructive pulmonary disease: a seven-year observation in clinical practice.Journal of patient-reported outcomes · 2025Observational
- Improving the Implementation of Patient-Reported Outcome Measure in Clinical Practice: Tackling Current Challenges With Innovative Digital Communication Technologies.Journal of medical Internet research · 2025Article
- An Accessible Web-Based Survey to Monitor the Mental Health of People With Mild Intellectual Disability or Low Literacy Skills During the COVID-19 Pandemic: Comparative Data Analysis.JMIR public health and surveillance · 2024Article
- Comparison of Disease Severity Classifications of Chronic Obstructive Pulmonary Disease: GOLD vs. STAR in Clinical Practice.Diagnostics (Basel, Switzerland) · 2024Article
- [Inclusive monitor research among people with mild intellectual disabilities or low literacy skills].TSG : tijdschrift voor gezondheidswetenschappen · 2024Article
- Perspectives of Patients and Professionals on Implementing a Computer Adaptive Vision-Related Quality of Life Outcome (CAT-EyeQ) in Clinical Practice.Translational vision science & technology · 2024Article
- The Conceptual Independence of Health Status, Respiratory Symptoms and Dyspnea in Chronic Obstructive Pulmonary Disease in Real Clinical Practice.Diagnostics (Basel, Switzerland) · 2023Article
- Comparison of Predictive Properties between Tools of Patient-Reported Outcomes: Risk Prediction for Three Future Events in Subjects with COPD.Diagnostics (Basel, Switzerland) · 2023Article
- 'Language has been granted too much power'.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Outcome measures in psoriatic arthritis: Where next?Musculoskeletal care · 2022Review
- Development and assessment of a verbal response scale for the Patient-Specific Functional Scale (PSFS) in a low-literacy, non-western population.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2021Article
- Developing a protocol for adapting multimedia patient-reported outcomes measures for low literacy patients.PloS one · 2021Article
- Reductions in Readmission Rates Are Associated With Modest Improvements in Patient-reported Health Gains Following Hip and Knee Replacement in England.Medical care · 2017Article
- Checklist to operationalize measurement characteristics of patient-reported outcome measures.Systematic reviews · 2016Review
- Using patient reported outcome measures in health services: a qualitative study on including people with low literacy skills and learning disabilities.BMC health services research · 2012Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatient-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.
methodsTaking 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.
resultsPeople 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.
conclusionOur 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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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.