Outcome measurement in functional neurological disorder: a qualitative study on the views of patients, caregivers and healthcare professionals

Background:In this qualitative study, we aimed to obtain and synthesise the views of patients with functional neurological disorder (FND), their caregivers, and relevant healthcare professionals (HCPs) on outcome measurement in FND. Methods:Semi-structured interviews were conducted with 22 FND patients, 18 caregivers and 21 HCPs, sampled purposively in the United Kingdom. Transcripts were analysed through inductive thematic analysis.Results:While reduction or resolution of FND symptoms were frequently mentioned as important treatment goals in all groups, this was reported by a larger proportion of caregivers and HCPs than patients. Patients most frequently hoped for improvements in mental health/wellbeing. Other important treatment goals were resuming work, and an increase in independence, self-management or self-efficacy.Of the 20 domains deemed relevant for outcome assessment, improvements in FND symptoms, emotional well-being, activities of daily living and quality-of-life, were mentioned most frequently.None of the participants thought that outcome assessment should be purely clinician-rated or objective; all believed that the patient’s subjective experience should be central. Nevertheless, participants in all groups acknowledged that clinician-rated or objective OMIs have added value in clinical outcome assessment. The benefits of digital outcome assessment were also mentioned by several participants. Conclusions:This is the first study to capture the views of key stakeholders on outcome assessment in FND. The findings indicate that outcome measures for FND should be patient-centred, whilst also including HCP opinion. Critical domains for assessment are FND symptoms, mental health, quality-of-life and the ability to perform activities of daily living.