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. 2022 May 27;14(5):896–910. doi: 10.4254/wjh.v14.i5.896

Table 6.

Stages within an patient reported outcome measure adaption process where patients may be involved

Stage
How can PI be involved
Establishing a need for a new or refined PROM Review existing PROMs; Critique existing PROMs; Determine whether a new PROM is needed
Development of a conceptual model Review of conceptual model to ensure validity
Identifying item content Input on study design; Input on culturally appropriate issues; Input on participant facing documents; Input on ethics and governance issues
Item development Analysis and interpretation of qualitative interviews; Advice and input on wording of potential items
Item reduction Identify potentially redundant items; Identify items that could benefit from rewording; Input and advice on ordering of items
Pre-testing of items (cognitive interviews/debriefing) Input on study design, methodology, recruitment, design and content of public facing documents and conducting the interviews; Analyse and/or interpret results
Selection of items for the PROM Advice on final selection of items; Consideration of number of items to be included; Advice and input into how PROM may be used in clinical settings
Design of the PROM Advice and input on format and layout of PROM; Advice on instructions of how to complete the PROM, framing of questions, wording of response options, and order of items

PI: Public involvement; PROMs: Patient reported outcome measures.