How was the development of the research question and outcome measures informed by patients’ priorities, experience, and preferences?
Patients were involved in the original systemic review that underpinned GRIPP and actively contributed to identifying the issue of inconsistent reporting, the need for guidance, and the research question.
How did you involve patients in the design of this study?
Patients were involved as research partners in all aspects of the study including identifying the original research question, identifying the need for the original systematic review, and identifying the need for consensus.
Were patients involved in the recruitment to and conduct of the study?
The patient partners, along with other patient organisations and charities, recruited nearly half of all participants for the Delphi survey. They helped pilot the electronic survey for the first phase of the Delphi survey consensus process and helped other patient reps with technical aspects of completing the online survey, hence improving the response rate in each round of the Delphi. They also worked with the researchers to collate comments from each Delphi survey round, to adapt items, and to feed back to the participants for the next Delphi survey round. They checked comprehension of changed items and comments from the lay perspective. The patient partners took part in the consensus workshop, alongside five other patients (n = 8/25 in total) to agree consensus on items not reaching consensus and to adapt wording where items were not clear. The patient partners contributed to edits of the paper and are coauthors.
How will the results be disseminated to study participants?
GRIPP2 will be disseminated to all study participants via email. The authors will disseminate via conference presentations. Funding bodies and other journal editors internationally will be encouraged to use GRIPP2.