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 .
The Veterans Short Form 36 questionnaire is predictive of mortality and health-care utilization in a population of veterans with a self-reported diagnosis of asthma or COPD.
STUDY OBJECTIVE Measures of health-related quality of life ( HRQL ) correlate with disease stage in persons with COPD . However , as their predictive capacity for mortality or medical utilization is less well defined , we sought to examine the relationship of a general measure of HRQL and outcomes in persons with obstructive lung disease . DESIGN Prospect i ve cohort study . SETTING Upper Midwest Veterans Integrated Service Network (VISN)-13 . PARTICIPANTS All veterans in VISN-13 ( n = 70,017 ) were surveyed with the Veterans Short Form 36 ( SF-36V ) .  Persons with reported asthma or COPD who completed the SF-36V formed the study cohort ( n = 8,354 ) . MEASUREMENTS AND RESULTS For purpose s of analysis , individuals were divided into quartiles of HRQL according to their physical component summary ( PCS ) and mental component summary ( MCS ) , values derived from the SF-36V . Outcomes of mortality , hospitalization , and outpatient visits were recorded for 12 months after the survey . Outpatient utilization was dichotomized into high vs low use , with high use being defined as the upper quartile of visits in the 12 months prior to survey mailing . The study cohort had a mean age of 65 years and was largely male ( 95 % ) , both consistent with a veteran population . After correcting for potential confounding factors through multivariable regression , the PCS was independently predictive of death , hospitalization , and high outpatient utilization . When using the first quartile of PCS as the reference population , those in the fourth quartile of PCS had a hazard ratio for death of 5.47 ( 95 % confidence interval [ CI ] , 3.63 to 8.26 ) . Similarly , the odds ratios for hospitalization , high primary care visits , and high specialty medicine visits in the fourth quartile of PCS were 1.82 ( 95 % CI , 1.51 to 2.19 ) , 1.54 ( 95 % CI , 1.26 to 1.87 ) , and 1.46 ( 95 % CI , 1.21 to 1.78 ) , respectively . The MCS , through multivariable regression , was predictive of death but unassociated with subsequent hospitalization or high outpatient utilization . CONCLUSION HRQL , as assessed by the SF-36V , is an independent predictor of mortality , hospitalization , and outpatient utilization in persons with self-reported obstructive lung disease
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 .