Raising the Digital Profile of Facial Palsy: National surveys of patients’ and clinicians’ experiences of changing UK treatment pathways and views on future role of digital technology

Ala Szczepura, Nikki Holliday, Catriona Neville, Karen Johnson, Amir Khan, Samuel Oxford, Charles Nduka

Research output: Contribution to journalArticle

Abstract

Background: Facial nerve palsy (FNP) is the most common sudden onset disorder affecting a single nerve, leaving patients unable to adequately move muscles on the affected side of the face. Patients with FNP may experience challenges in accessing facial neuromuscular retraining (NMR), a therapy used to increase muscle and improve nerve function health care. Access and therapy delivery could potentially be improved via telerehabilitation. However, there is limited research on patients’ and clinicians’ experiences of FNP treatment pathways, or their views about the benefits of digital technology to assist NMR.

Objectives: This study aimed to gather evidence about FNP treatment pathways in the UK, barriers to accessing NMR, factors influencing patient adherence, measures used to monitor recovery, and the potential value of an emerging wearable digital technology.

Methods: National surveys of (1) facial palsy patients and (2) facial therapy specialists to gather evidence. Questionnaires were co-designed with users, and followed a similar format to enable cross-referencing of responses. A follow-on survey (3) of national specialists investigated outcomes used to monitor recovery in greater detail. Analysis of closed questions dependent on data distribution; open text responses analysed using thematic content analysis.

Results: National survey responses included (1) 216 facial palsy patients and (2) 25 specialist therapists. Significant variations observed in treatment pathways. Evidence of more rapid initial prescribing of corticosteroids (prednisolone) and earlier referral for NMR therapy in cases diagnosed more recently. Patients report 3·27 (SD=1.60) treatments provided by different specialists, but multidisciplinary team reviews are rare. Barriers to NMR referral include difficulties accessing funding, shortage of specialist therapists, and limited awareness of NMR amongst general practitioners (GPs); 33% of GP referrals initiated by patients themselves. Patients travel long distance to reach an NMR specialist centre; 8.6% travel ≥ 115 miles. Thematic content analysis demonstrates positive attitudes to the introduction of digital technology among patients and clinicians, with similar incentives and barriers identified by both. Follow-on survey (3) 28 specialists show no consistency in measures used to monitor recovery, or in the definitions of a clinically significant change. Three main barriers to NMR adherence are identified by therapists and patients, all of which can be addressed by a suitable digital technology.

Conclusions: This study provides evidence on patients’ and clinicians’ experiences of FNP treatment pathways, and their views on the value of digital technology to enhance provision of NMR and improve outcomes. Possible ways in which the emerging digital technology can improve therapy provision and provide more rigorous evidence on effectiveness are described. The study highlights the need to better understand patients’ and clinicians’ experiences. It is suggested that one legacy of the COVID-19 pandemic will be lower organisational barriers to this digital technology introduction, especially if cost-effectiveness can be demonstrated.
Original languageEnglish
Pages (from-to)(In-Press)
JournalJournal of Medical Internet Research
Volume(In-Press)
Publication statusAccepted/In press - 25 Jun 2020

Funder

This research was funded as part of the FRAME 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).

Keywords

  • Bell’s palsy; facial nerve paralysis; patient experience; treatment pathway; facial exercise therapy; neuromuscular retraining; treatment adherence; digital technology; outcome measures; telerehabilitation; biosensors; COVID-19.

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