Conclusion Our findings suggest that people with low literacy skills or learning disabilities are left out of the development of PROMs .
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 .
Measurement of short-term changes in dyspnea and disease-specific quality of life following an acute COPD exacerbation.
STUDY OBJECTIVE To determine whether currently available measurement tools can be used to obtain valid measurements of short-term changes in dyspnea and disease-specific quality of life ( QOL ) in out patients with an acute COPD exacerbation . DESIGN Prospect i ve cohort study . METHODS Sixty-six patients with an acute COPD exacerbation who presented to the emergency department completed the chronic respiratory disease index question naire ( CRQ ) and the baseline dyspnea index ( BDI ) and were discharged home receiving 10 days of medical therapy .  Re assessment with the  CRQ and the transitional dyspnea index ( TDI ) occurred within 48 h of relapse ( defined as an urgent hospital revisit within 10 days because of worsening respiratory symptoms ) , or 10 days later if relapse did not occur . RESULTS Patients who did not relapse ( n = 49 ) showed moderate-to-large improvements in disease-specific QOL across all four CRQ domains ( improvements in each domain of 1.4 to 1.9 U ; p < 0.001 for all domains ) and large positive changes in the TDI ( total TDI score , + 5.02 plus minus 0.55 U ; p = 0.0001 ) . In contrast , patients who had a relapse ( n = 17 ) did not have improved CRQ or TDI scores ( mean negative change in three of four CRQ domains , total TDI score - 3.06 plus minus 1.14 U ; p = 0.02 ) . Changes in the CRQ dyspnea score and TDI correlated with each other ( r = 0.78 ; p = 0.0001 ) and with changes in FEV(1 ) ( CRQ , r = 0.48 and p = 0.0001 ; TDI , r = 0.46 and p = 0.0002 ) . Ten control patients with stable COPD showed no changes in the CRQ or TDI over 10 days . CONCLUSION The CRQ and BDI/TDI can be used to obtain valid , responsive measures of acute changes in QOL and dyspnea associated with a COPD exacerbation . The direction and magnitude of change in these scores was highly correlated with clinical outcome and with other health measures . Most out patients treated for a COPD exacerbation experience significant short-term improvements in QOL and dyspnea , with the exception of patients who have a clinical relapse of symptoms
Conclusion Our findings suggest that people with low literacy skills or learning disabilities are left out of the development of PROMs .
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 .