Introduction
Trigeminal neuralgia (TN) is an excruciating unilateral facial pain, which can be managed medically and surgically. Due to the lack of standardized outcomes of treatment in the field, it has been difficult to compare the available treatments and to draw meaningful conclusions about their efficacy. Furthermore, patients have seldom been involved in TN research and outcomes of treatment should be meaningful to those most affected by TN.
The aim of the present thesis was to reach consensus on what outcomes of treatment are important to different TN stakeholders (patients, clinicians, and researchers), and to develop the TN Core Outcome Set (COS) to be used in future clinical trials.
Methodology
Mixed methods were used to achieve this thesis’ aim. Two systematic reviews (SR) were conducted to (1) identify what outcomes have been used to date, and (2) to investigate the psychometric performance of patient reported outcomes (PROMs). Focus group (FG) work with TN patients identified outcomes that mattered most to them. Secondary analysis of the SR data and qualitative data analysis of the FG work were used to develop a list of outcomes to be presented to the different stakeholders during consensus processes. A three-round Delphi survey was conducted to prioritise the identified outcomes. It involved patients, clinicians, and researchers. Participants were asked to score the outcomes on scale from 1 to 9 (1– 3 not important;4– 6 important but not critical;7– 9 critical). Outcomes scored as critical by ≥70% and not important by