ENT Aspects of Balance Priority Setting Partnership
Balance disorders are a neglected area of healthcare research and yet 40% of people over the age of 40 experience symptoms of dizziness and/or imbalance. Consequently there is a need to raise the profile of balance disorders, particularly among researchers and funders, to make sure balance disorders receive greater priority. It is vital that more research is done in this area and that the research focuses on questions that are most important to those affected by balance disorders.
In June 2009 a steering group comprising individuals from the British Society for Academic Otolaryngology together with the James Lind Alliance and supported by ENT UK, established an ENT Aspects of Balance “Priority Setting Partnership (PSP)”. The aim of this PSP was to bring clinicians and patients together to identify unanswered questions about the treatment of balance disorders, and then work with the patients and clinicians to prioritise them for research.
The process began in May 2010 with an initial meeting attended by key stakeholders, including clinicians, patients and representatives from patient support groups. This meeting led to the distribution of a survey designed to collect treatment uncertainties from a wide range of individuals and organisations. Those contacted were invited to take part by helping to identify the most important questions they had about the treatment of balance disorders and then deciding which they wished to see entered into the prioritisation process. Questions which, when answered by research, would help improve the lives of people with balance disorders.
After the initial survey, all the responses were collated, duplicates removed, and the list condensed to 146 uncertainties. This list was then redistributed and participants asked to list their top five from the total of 146 and submit this to the PSP office. The Partnership collated these lists and, based on the information produced, a core set of 25 uncertainties were identified which were taken forward to the final priority setting meeting.
The Partnership’s final priority setting meeting took place on 31st May 2011 at the Royal College of Surgeons of England in London. Facilitated by the James Lind Alliance, the meeting was attended by a mixture of patients, clinicians and patient representatives. No one group predominated. Through structured workshop sessions and much discussion the list was organised in order of priority and by the end of the day a “Top 10” list of patients’ and clinicians’ shared priorities for research was produced.
The Top 10 Research Priorities for ENT Aspects of Balance
- What is the optimal process for general practitioner education and training for improved diagnosis and management of balance disorders?
- What is the best way of training health professionals in the management of balance disorders?
- What is the most effective treatment for vestibular migraine?
- What are the best interventions to improve balance/minimise symptoms in daily activities such as supermarkets, escalators etc?
- Is any specific surgical intervention effective in Ménière’s disease and what procedure is best?
- Are there any effective interventions for the ear pressure symptoms in Ménière’s disease?
- What is the optimum pharmacological strategy for the management of patients with Ménière’s disease? In particular, what are the effects of betahistine (including long term effects)?
- Is it helpful in preventing the severity, frequency and progression of attacks of Ménière’s disease to adopt a specific diet, or restrict salt, caffeine or fluid intake?
- Are the home-based exercises given to patients with balance disorders effective?
- Are stress management techniques helpful in patients with balance disorders?
The research priorities for balance are now being disseminated to research and funding bodies and it is hoped that at least the “Top 10” uncertainties will be picked up by funders and be the focus of future research projects in the field of balance disorders.
Thanks to Martin Burton, Consultant Otolaryngologist, Oxford University Hospitals NHS Trust and Lester Firkins OBE, Chair, James Lind Alliance, Strategy and Development Group – the driving forces behind this PSP; along with the initial stakeholders, Professor Linda Luxon, UCL Ear Institute and Dr Andrew Higgins (patient representative). Jo White from ENT UK for her ongoing support and coordination of the project. Mark Fenton, Editor UK DUETS and Steve Sharp, Knowledge Manager, NHS Evidence, NICE. Natasha Harrington-Benton and Dr Humphrey Bowen from the Ménière’s Society. Emma from Labyrinthitis.org.uk and Gerardine Fagan from the NE1 Dizzy Support Group. All individuals, patient and professional, who responded to the survey.