Raising the Profile of Facial Palsy: National Surveys of Patients’ and Clinicians’ Experiences of Current Treatment Pathways and Views on Future Role of Digital Technology

Background: Bell’s palsy is the most common sudden onset disorder affecting a single nerve. To date, there is limited research on patients’ and clinicians’ experiences, changes in treatment pathways over time, or individuals’ views on the potential role of new technology. Methods: National surveys of (i) facial palsy patients (via charity Facial Palsy UK) and (ii) facial therapy specialists (via Facial Therapy Specialists UK), to explore current treatment pathways and changes over time, involvement of patients in decision-making, and potential role of emerging digital technologies. Further survey of national specialists to identify main outcome measures currently used to monitor recovery. Analysis of closed questions dependent on data distribution; open question responses explored using thematic content analysis. Findings: 216 responses to national patient survey; 25 specialist therapist responses. Analysis shows large variations in care pathways. Adult patients describe 3·27 (SD=1.60) different specialist treatments; only 23% report a multidisciplinary case review. More rapid initial treatment, including prednisolone <72 hours, observed in cases diagnosed most recently. Among patients referred for facial exercise therapy: 8.6% travel >100 miles, patients report 33% general practitioner referrals initiated by themselves, the same barriers to adherence identified by therapists and patients. Very few patients (<10%) offered psychological therapy. Treatment outcome measures and definitions of clinically significant changes lack consistency nationally. In terms of future introduction of new digital technology, four common themes emerge from analysis of patients’ and therapists’ responses. Interpretation : This study has uncovered considerable variation in facial palsy treatment pathways and the outcome measures used to monitor recovery. Possible ways in which emerging digital technology could improve therapy provision and provide more rigorous evidence on effectiveness are described. There is a need for improved understanding of patients’ experiences to ensure relevance of future treatment guidelines.Funding Statement: This study is funded as part of the FRAME consortium programme (Facial Remote Activity Monitoring Eyewear: An inconspicuous, non-invasive, mobile sensor device for real-time control of assistive technologies through facial expression) which is supported by the National Institute for Health Research (Reference Number II-LA-0814-20008).Declaration of Interests: The authors NH, CN, KJ, AJK, SO, CNd, AS all declare that they have no conflict of interest.Ethics Approval Statement: Ethical approval was granted by the Health & Life Sciences Research Ethics Committee, University of Coventry (ref: P48908).