Development of an IBD patient-reported experience measure

• Research type

  Research Study

• Full title

  Development of an IBD patient reported experience measure for use in a quality improvement programme: workshops and qualitative research

• IRAS ID

  291101

• Contact name

  Alan Lobo

• Contact email

  alan.lobo@nhs.net

• Sponsor organisation

  Sheffield Teaching Hospitals NHS FT

• Duration of Study in the UK

  0 years, 5 months, 1 days

• Research summary

  Summary of Research
  Patient-led improvements to the Sheffield Inflammatory Bowel Disease (IBD) services will soon be made through a Health Foundation-funded partnership. Before these changes can be evaluated, we need to develop a patient reported experience measure (PREM). This protocol describes a three-stage project which will develop and assess the content / face validity of the PREM before its use in service evaluation.

  Stage 1
  An expert patient group will be convened to select themes and items for the PREM. Source material will include a published systematic review, a Crohn's & Colitis UK (CCUK) fact-finding exercise, and Health Foundation patient-centred care policy documents. This work will take place over two to three workshops in January and February 2021. Although the expert patient group are collaborators rather than research participants, we will seek permission to record these sessions so that their preferred wording of questions, and the proceedings of the meeting can be accurately captured.
  IBD PREM Expert Group Information Sheet
  IBD PREM Workshops Audio Consent

  Stage 2
  We will recruit 12-20 participants with IBD for online “think aloud” interviews during which we will assess the content and face validity of the PREM.
  IBD PREM Information Sheet
  IBD PREM Qualitative Interview Audio Consent

  Stage 3
  We will reconvene the expert patient group to make final modifications to the PREM based on the findings of Stage 2.

  Summary of Results
  This study aimed to co-produce a Patient-Reported Experience Measure (PREM) with service users for an Inflammatory Bowel Disease (IBD) service evaluation. A pool of 75 items was drawn from published survey instruments covering interactions with services and aspects of living with IBD. In Stage 1, during two workshops, eight expert service users reduced candidate items through a ranked choice voting exercise and suggested further items. During Stage 2, eighteen previously uninvolved people with IBD assessed the face and content validity of the candidate items in ‘Think Aloud’ interviews. During two final workshops (Stage 3), the expert service users removed, modified and added items based on the interview findings to produce a final version of the PREM. Stage 1 generated a 35-item working PREM mapped to the following four domains: Patient-Centred Care; Quality; Accessibility; Communication and Involvement. The PREM included a set of nine items created by the expert group which shifted the emphasis from ‘self-management’ to ‘living with IBD’. Stage 2 interviews showed that comprehension of the PREM was very good, although there were concerns about the wording, IBD-relevance and ambiguity of some items. During the final two workshops in Stage 3, the expert service users removed seven items, modified 15 items and added seven new ones based on the interview findings, resulting in a 38-item PREM. This study demonstrates how extensive service user involvement can inform PREM development.

• REC name

  London - Riverside Research Ethics Committee

• REC reference

  20/PR/0974

• Date of REC Opinion

  4 Jan 2021

• REC opinion

  Favourable Opinion