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 .
Outcome evaluation of a randomized trial of the PhoenixCare intervention: program of case management and coordinated care for the seriously chronically ill.
OBJECTIVE To document outcomes of a r and omized trial of the PhoenixCare demonstration program of palliative care and coordinated care/case management for seriously chronically ill individuals who simultaneously received active treatment from managed care organizations ( MCOs ) . DESIGN Patients , continuously enrolled between July 1999 , and March 2001 , were r and omly assigned to the PhoenixCare program  or a control group receiving usual MCO care . SETTING Hospice of the Valley , Phoenix , Arizona . PARTICIPANTS Participants were 192 patients with chronic obstructive pulmonary disease ( COPD ) or chronic heart failure ( CHF ) , who had an estimated 2-year life expectancy . INTERVENTION Intensive home-based case management provided by registered nurse casemanagers , in coordination with patients ' existing source of medical care , comprised the intervention . Program foci included disease and symptom management , patient self-management of illness and knowledge of illness-related re sources , preparation for end-of life , physical and mental functioning , and utilization of medical services . OUTCOME MEASURES Outcomes , assessed every 3 months by telephone interview , included measures related to all program foci ; the SF-36 was used to evaluate physical and mental functioning ; emergency department visits exemplified medical service utilization . RESULTS Compared to controls , PhoenixCare patients exhibited significantly better outcomes on self-management of illness , awareness of illness-related re sources , and legal preparation for end of life . They reported lower symptom distress , greater vitality , better physical functioning and higher self-rated health than r and omized controls . Emergency department utilization was equivalent across groups . Patients with COPD showed stronger responsiveness to the intervention . CONCLUSION A novel model of patient care that combined greatly enhanced palliative carefocused case management with ongoing MCO-based treatment was associated with improved functioning of chronically severely ill patients in the last years of life
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 .