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

## TL;DR

This study adapts a patient experience measure originally designed for rheumatoid arthritis to be used with patients who have interstitial lung disease.

## Contribution

The paper introduces a modified version of the RA-PREM tailored for ILD patients, validated for acceptability and face/content validity.

## Key findings

- Four statements across three domains of the RA-PREM were modified after patient feedback.
- The modified ILD-PREM was accepted by patients and met face/content validity criteria.
- Seventy-three patients completed the ILD-PREM, showing its feasibility in clinical settings.

## Abstract

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.

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.

A single NHSE-commissioned, regional ILD service/UK.

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.

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.