What question did this study set out to answer?

The aim is to assess the acceptability and feasibility of the RA-PREM for patients with interstitial lung disease.

January 22, 2026Open Access

Patient-reported experience measure (PREM) for patients with interstitial lung disease (ILD): modification of a pre-existing measure

SJSteve JonesCystic Fibrosis Trust CCCharlie CrookRoyal Devon & Exeter NHS Foundation Trust JLJoseph LanarioRoyal Devon & Exeter NHS Foundation Trust

Key Points

The aim is to assess the acceptability and feasibility of the RA-PREM for patients with interstitial lung disease.
Employed a mixed-methods approach with patient partners and an interdisciplinary group.
Conducted patient surveys and focus groups to evaluate and modify the RA-PREM.
Gathered consensus from patients and healthcare researchers on statement validity.
Tested the modified ILD-PREM for acceptability and validity among ILD patients.
Thirteen ILD patients participated in the focus group, leading to nuanced modifications of the RA-PREM.
Five patients and three researchers achieved consensus on the validity of the modified statements.
Seventy-three patients completed the ILD-PREM, confirming its acceptability.
The ILD-PREM maintained the original RA-PREM structure while ensuring face and content validity.

Abstract

Objective Patient-reported experience measures (PREMs) are a key component of healthcare accountability frameworks, health policy, integrated care board commissioning and integrated care partnerships 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 interstitial lung disease (ILD) population. Design A 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 8 domains, 24 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. Setting A single NHSE-commissioned, regional ILD service/UK. Results Thirteen 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 (three male) and three healthcare researchers attained consensus on the face/content validity of statements. Seventy-three patients completed the ILD-PREM following outpatient contact. Conclusion The ILD-PREM retains 24 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.

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