A multi-disciplinary group of experts from across the health system were facilitated to pinpoint the challenges to optimal care and then define a set of statements that described ‘ideal’ practice. This steering group was represented by clinical and nursing specialists as well as the main patient group.
A structured survey was developed and disseminated across other UK-based specialist HCPs with an interest and expertise in managing this patient group. The survey tested the strength of agreement that existed in relation to all the statements developed.
Following structured review of the results by the steering group, a sub-set of the survey statements were then ratified by the patient group and then shared with patients with the condition to further inform statements designed to define realistic but stretching referral standards.
A second facilitated review of the full dataset by the steering group led to the development of a core set of recommendations that reflected the results achieved. Recommendations focused on addressing the barriers to effective diagnosis and referral to specialist services for treatment.
A manuscript capable of peer-reviewed publication was developed and provided as draft for the steering group to adapt and finalise. Triducive supported the authors to take ownership of the draft and to submit to BMJ for peer review.