The development of the PAOLI (People with Aphasia and Other Layperson Involvement) guideline for reporting Patient and Public Involvement (PPI) in aphasia research

Abstract

Background: Patient and Public Involvement (PPI) in aphasia research obliges researchers to include people with aphasia (PWA) as research partners from the beginning of the study. Yet the quality of reporting on the level and type of involvement is poorly documented in the absence of a guideline to document contribution. This study aimed to extract the items and statements relevant for the development of the People with Aphasia and Other Layperson Involvement (PAOLI) reporting guideline, in collaboration with people with aphasia. Method: The EQUATOR method for developing a reporting guideline was followed. This involved: (1) evidence from a scoping review, (2) a thematic analysis of the in-depth interviews, of people with stroke and aphasia, on the topics to be included in the pilot draft, (3) a two round Delphi survey for item/statement selection and (4) an experts’ consensus meeting. The research team involved two PPI partners with chronic stroke-induced aphasia. The research process involved co-design and was informed by the Dialogue model. Results: Twenty-three participants, from 13 countries, voted in round one with 87% (20/23) responding in round two. The PAOLI guideline includes 17 items (with 66 descriptive statements) on how to: establish collaborations, recruit patients, gain informed consent, organize induction meetings, train patient partners, create communication links, engage communication partners, conceptualize topics, establish research priorities, reach consensus, work with co-design methods, develop proposals, assist with dissemination of results, promote implementation of the outcomes, support patient partners and promote self-evaluation, monitor progress and assess impact of the patient involvement. These items were considered by the participants as the most important for the involvement of people with aphasia as research partners. Conclusion: The PAOLI is the first international consensus guideline for reporting patient involvement in aphasia research. Researchers are encouraged to adopt the reporting guideline to improve the quality of their research by documenting the meaningful involvement of people with aphasia within the research team from the start.