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

Jessica Mandizha; Charlie Crook; Joseph Lanario; Rebecca Davies; Anna Duckworth; Howard P Almond; Sarah Lines; Michael Gibbons; Chris Scotton; Anne-Marie Russell

doi:10.1136/bmjresp-2025-003330

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

BMJ Open Respir Res. 2026 Jan 20;13(1):e003330. doi: 10.1136/bmjresp-2025-003330.

Authors

Jessica Mandizha^{1

2}, Charlie Crook¹, Joseph Lanario^{1

3}, Rebecca Davies¹, Anna Duckworth^{4

5}, Howard P Almond^{6

7}, Sarah Lines¹, Michael Gibbons^{1

8}, Chris Scotton⁹, Anne-Marie Russell^{10

11}

Affiliations

¹ Respiratory Medicine, Royal Devon and Exeter NHS Foundation Trust, Exeter, UK.
² Faculty of Health Sciences, University of Exeter, Exeter, UK.
³ College of Medicine and Health, University of Birmingham, Birmingham, UK.
⁴ Respiratory Medicine, Royal Devon and Exeter Hospital, Exeter, UK.
⁵ Medical School, University of Exeter, Exeter, UK.
⁶ Respiratory Medicine, Royal Devon University Healthcare NHS Foundation Trust, Exeter, UK.
⁷ School of Healthcare Professions, University of Exeter, Exeter, UK.
⁸ Faculty of Medicine, University of Exeter, Exeter, UK.
⁹ NIHR Biomedical Research Centre, University of Exeter, Exeter, UK.
¹⁰ College of Medicine and Health, University of Birmingham, Birmingham, UK a.russell.1@bham.ac.uk.
¹¹ The University of Adelaide Faculty of Health and Medical Sciences, Adelaide, South Australia, Australia.

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.

Keywords: Idiopathic Pulmonary Fibrosis; Interstitial Fibrosis; Patient Outcome Assessment.

MeSH terms

Aged
Feasibility Studies
Female
Focus Groups
Humans
Lung Diseases, Interstitial* / psychology
Lung Diseases, Interstitial* / therapy
Male
Middle Aged
Patient Reported Outcome Measures*
Reproducibility of Results
Surveys and Questionnaires
United Kingdom