Modification of the Rheumatoid Arthritis (RA) Patient Reported Experience Measure (PREM) for Patients with Interstitial Lung Disease (ILD).

ObjectivePatient reported experience measures (PREMs) are a key component of healthcare accountability frameworks, health policy, integrated care board (ICB) commissioning and integrated care partnerships (ICPs) generating data which are crucial markers of patient care quality. The Rheumatoid Arthritis Patient Reported Experience Measure (RA-PREM) incorporates the eight core elements of NHS Patient Experience Framework and is validated in a range of rheumatic conditions. Our objective is to determine the acceptability and feasibility of the RA-PREM for an ILD population. DesignA mixed-methods patient-centred approach incorporating an interdisciplinary research steering group with patient-partners. Patient surveys evaluated the language and meaning of the RA-PREM eight domains, twenty-four statements and response categories. A patient focus group examined contentious statements. A consensus group of expert patient-partners agreed statements for the modified RA-PREM. Focus group participants reviewed the modified instrument (ILD-PREM) for acceptability and face/content validity. SettingA single NHSE-commissioned, regional ILD service/UK. ResultsThirteen patients (10 male) diagnosed with ILD participated in focus group discussions. Critical discussion of the RA-PREM resulted in nuanced modifications of four statements of three domains. Five patients (3 male) and three healthcare researchers attained consensus on the face/content validity of statements. Seventy-three patients completed the ILD-PREM following outpatient contact. ConclusionThe ILD-PREM retains twenty-four statements representing the eight domains of the RA-PREM. It meets face/content validity criteria and is acceptable to an ILD population. Longitudinal validation of the ILD-PREM across ILD services including further testing in global minority groups will establish criterion and construct validity and objective measures of reliability. Key MessagesO_LIWhat is already known on this topic O_LIPatient experience metrics are a key component of healthcare quality frameworks. C_LIO_LIBetter patient experience is associated with better quality of care, higher treatment adherence and improved patient outcomes. C_LI C_LIO_LIWhat this study adds O_LIThe RA-PREM has been adapted for use within ILD, using patient-centred methods. C_LIO_LIThe ILD-PREM retains twenty-four statements capturing level of agreement which map to the eight indicators of the NHS Patient Experience Framework. C_LIO_LIThe ILD-PREM has face/content validity and clinical utility for an ILD population. C_LI C_LIO_LIHow this study might affect research, practice, or policy O_LIThis is the first disease-specific PREM for ILD enabling data collection for service evaluation and improvement. C_LIO_LIIt is judicious to modify validated measures to obviate the need for resource intensive development of a new instruments where possible. C_LI C_LI