{
  "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.",
  "authors": [
    {
      "affiliations": [
        "Respiratory Medicine, Royal Devon and Exeter NHS Foundation Trust, Exeter, UK",
        "Faculty of Health Sciences, University of Exeter, Exeter, UK"
      ],
      "name": "Jessica Mandizha"
    },
    {
      "affiliations": [
        "Respiratory Medicine, Royal Devon and Exeter NHS Foundation Trust, Exeter, UK"
      ],
      "name": "Charlie Crook"
    },
    {
      "affiliations": [
        "Respiratory Medicine, Royal Devon and Exeter NHS Foundation Trust, Exeter, UK",
        "College of Medicine and Health, University of Birmingham, Birmingham, UK"
      ],
      "name": "Joseph Lanario"
    },
    {
      "affiliations": [
        "Respiratory Medicine, Royal Devon and Exeter NHS Foundation Trust, Exeter, UK"
      ],
      "name": "Rebecca Davies"
    },
    {
      "affiliations": [
        "Respiratory Medicine, Royal Devon and Exeter Hospital, Exeter, UK",
        "Medical School, University of Exeter, Exeter, UK"
      ],
      "name": "Anna Duckworth"
    },
    {
      "affiliations": [
        "Respiratory Medicine, Royal Devon University Healthcare NHS Foundation Trust, Exeter, UK",
        "School of Healthcare Professions, University of Exeter, Exeter, UK"
      ],
      "name": "Howard P Almond"
    },
    {
      "affiliations": [
        "Respiratory Medicine, Royal Devon and Exeter NHS Foundation Trust, Exeter, UK"
      ],
      "name": "Sarah Lines"
    },
    {
      "affiliations": [
        "Respiratory Medicine, Royal Devon and Exeter NHS Foundation Trust, Exeter, UK",
        "Faculty of Medicine, University of Exeter, Exeter, UK"
      ],
      "name": "Michael Gibbons"
    },
    {
      "affiliations": [
        "NIHR Biomedical Research Centre, University of Exeter, Exeter, UK"
      ],
      "name": "Chris Scotton"
    },
    {
      "affiliations": [
        "College of Medicine and Health, University of Birmingham, Birmingham, UK",
        "The University of Adelaide Faculty of Health and Medical Sciences, Adelaide, South Australia, Australia"
      ],
      "name": "Anne-Marie Russell"
    }
  ],
  "title": "Patient-reported experience measure (PREM) for patients with interstitial lung disease (ILD): modification of a pre-existing measure",
  "uid": "236b14e9-8fae-5737-8a09-c8d8ccca55f3"
}