Despite the potentially negative impacts of facial palsy, there are major gaps in understanding relating to the treatment and care of those affected. In recognition of the pressing need to develop an agenda for research with the potential to address these gaps, Facial Palsy UK has taken steps to identify the top 10 research priorities in facial palsy, as identified by key stakeholders including patients, carers, health professional and researchers.
A Delphi study
Facial Palsy UK commissioned the Centre for Appearance Research at the University of the West of England to conduct a priority setting exercise. An approach called a Delphi study was used. This approach attempts to obtain consensus (agreement) amongst a panel of individuals with knowledge of a particular issue. It is widely used when involving patients to set research priorities for health conditions, because the questionnaires are completed remotely, which allows more respondents to take part and express their suggestions freely. In a Delphi study, the first round is typically an open response round, where respondents communicate their priorities via a survey, or in group discussion. Usually two further surveys are conducted, where respondents rate the importance of the research priorities identified by the group. The process followed in this particular study is outlined on the flow chart further down the page.
In total, 85 participants responded to the initial survey, comprising of 67 patients/carers and 18 health professionals/researchers. Most areas of the United Kingdom were represented. The majority of patient/carer respondents were female (85.1%) and had experienced acquired facial palsy (88.7 %) predominantly caused by Bells palsy (40.3%), Acoustic Neuroma/Vestibular Schwannoma (16.1%) or Ramsay Hunt syndrome (12.9%). In total 82.3% currently had facial palsy and 74.5% of these were receiving treatment.
Health professional respondents were primarily surgeons (58%) and physiotherapists (27.8%). They had between 1 and 40 years experience of working with facial palsy patients or conducting research.
Determining the ‘Top 10’ research priorities
The first round of the Delphi process focused on identifying a ‘long list’ of potential priorities. Then in Round 2 and 3, participants were asked to indicate the relative importance of these priorities. In order to list the ‘Top 10’ research priorities in order of importance, the researchers calculated the mean (average) ratings of importance given by participants.
A significantly larger number of patients and carers took part in the process compared to health professionals and researchers. We felt it was important to make sure each group’s research priorities were considered, therefore, the results were analysed according to group and are presented separately. A large degree of agreement between the two groups was evident, as seven out of the 10 top research priorities were shared.
The process for setting the research priorities
|Top 10 patient and carer priorities|
|1||What is the existing knowledge of front line healthcare staff (especially GPs) when dealing with facial palsy? How can this be improved?|
|2||How can vision be preserved in patients who are unable to close their eye?|
|3||What is the best protocol for clinically managing facial palsy? Including the type of treatment, its timing and sequence?|
|4||How can synkinesis be prevented and treated?|
|5||What influence does access/no access to treatment have on patient’s functional and psychological outcomes?|
|6||How effective are non-invasive methods for treating facial palsy (e.g. physiotherapy, external facial nerve stimulation)|
|7||What is the psychosocial impact of living with facial palsy, both in adults and in children?|
|=7||What information do individuals require upon a diagnosis of facial palsy?|
|9||What is the best way to manage eye discomfort (e.g. dry eyes, watering) in those with facial palsy?|
|10||What are the treatment options (surgical and non-surgical) for patients living with facial palsy?|
|Top 10 health professional and researcher priorities|
|1||How can synkinesis be prevented and treated?|
|2||What is the best protocol for clinically managing facial palsy? Including the type of treatment, its timing and sequence?|
|=3||What are the most reliable set of measures (functional and psychological) for assessing facial palsy and treatment outcomes?|
|=3||How can vision be preserved in patients who are unable to close their eye?|
|=3||What is the best way to manage eye discomfort (e.g. dry eyes, watering) in those with facial palsy?|
|6||What influence does access/no access to treatment have on patient’s functional and psychological outcomes?|
|7||What is the existing knowledge of front line healthcare staff (especially GPs) when dealing with facial palsy? How can this be improved?|
|8||Standardising the way clinicians objectively assess patients with facial palsy|
|9||Advancing the methods of facial reanimation and surgical care|
|10||What is the psychosocial impact of living with facial palsy, both in adults and in children?|
Notes = joint ranking . The shared research priorities between patients/carers and health professionals/researchers are shaded.
To the best of our knowledge, this is the first study worldwide to establish the research priorities for facial palsy. This is a significant first step and will ensure a more focused and coordinated approach to research in a field that has been largely overlooked to date. We hope sharing these results with researchers, clinicians and funding bodies will ensure future research is focused on the areas that will have the greatest benefits for those living with facial palsy.
Prepared by the Centre for Appearance Research, University of the West of England, Bristol.
Facial Palsy UK would like to thank The Worshipful Company of Grocers, who gifted £5,000 towards this important piece of research. We would also like to thank the fundraisers and donors from our community who raised £4,255 towards this project.
Last reviewed: 27-09-2017 || Next review due: 27-09-2019