• Why is this important?
• Aims and scope of the project
• Study processes
• The Priority Setting Partnership - UK
• The Priority Setting Partnership - Netherlands
• Initial Survey - UK
• Interim Survey - UK
• Priority Setting Workshop - UK
• Top-10 Research Priorities for MNYES - UK
• Top-10 Research Priorities for MNYES - Netherlands
• Next steps
• Contact

Initial Survey - UK

An initial survey was conducted between June 2020 and January 2021 asking patients, carers and healthcare professions:

What questions do you have about MNYES that you would like to see answered by research?

We received responses from 443 people (228 patients, 13 carers, 121 clinicians and 21 others). These provided 884 questions or statements (32 were out of scope) and therefore 852 statements were included in the next stages of the study.

Most of the questions or statements from the initial survey responses focused on Diagnosis, Aetiology, Health and Clinical Services and Treatment. Questions and statements were reviewed, organised and presented as a list of 96 draft questions.

Draft questions were organised into themes and reviewed by small groups from the steering committee (mixture of patients and healthcare professionals in each group). Small groups were presented with a selection of draft questions and the original questions and statements they related to. Groups discussed the draft questions, changed the wording to make sure they accurately reflected the original survey responses, and merged questions where there was overlap. Feedback from each small group informed a revised list of 55 draft questions.

The revised list of draft questions was reviewed by the full steering committee with accompanying original questions and statements made by participants of the initial survey. Questions were again discussed to ensure they reflected the original survey responses and there were no duplicates. Steering committee discussions informed a revised list of 46 questions which summarised the original survey responses.

The research literature was checked to find out if any of the 46 summary questions had already been answered. Some had been partially answered but none had been fully answered for all MNYES. The 46 summary questions were presented in a second (interim) survey.