Identifying the most important outcomes for reviews of research of treatments for rhinosinusitis - Project Summary July 2015
Background to project
This project aimed to identify the most important outcomes (results) for reviews of research of treatments for rhinosinusitis. Outcomes are what we expect to see change, improve or get worse during or after clinical trials of treatments for sinusitis. Examples could include changes in symptoms, changes in the need for or type of further treatments required, side effects of treatments and/or changes in general quality of life. What outcomes researchers choose to use may depend on a variety of issues such as how measurable they are, and how important they are either to health professionals and/or people living with rhinosinusitis.
Reviews of research compare and combine the results of previous clinical trials to enable researchers to get the best possible understanding of how well treatments for rhinosinusitis work. Those results can be used by patients, carers, health professionals, and health funders to make treatment decisions based on the best available information and evidence.
Identifying the most important treatment outcomes and then using them in reviews of research will help to ensure that future reviews are more useful to patients with rhinosinusitis and those involved in their care.
What we did
What we found
235 people completed the survey; 155 healthcare professionals and 80 people with rhinosinusitis. Healthcare professionals included mostly Ear Nose and Throat specialists but also GPs, and specialists in allergies. Over half of the people with rhinosinusitis who completed the survey were currently experiencing problems with their condition.
There were 653 suggestions for important outcomes. Of these 169 were from people who have rhinosinusitis, and 380 were from healthcare professionals. We removed 104 because they didn't fit the description of an outcome, such as suggestions of treatments (e.g. taking a steamy shower), 56 of these were from professionals and 48 from patients.
The majority of the suggested outcomes (70%) were about improving symptoms. These came from both patients and health professionals, suggesting that reviews of research in rhinosinusitis should focus on outcomes that measure symptoms (and improvements). There was some differences of opinion across these two groups about which symptoms were most important.
Symptoms listed as important were (in order of importance) nasal discharge or drip, nasal blockage, facial pain, headache (as distinct from facial pain) impaired sense of smell, nasal congestion and breathing difficulties. Less frequently suggested symptoms were sleep disturbance and tiredness, no less important however for those that experience them.
We have identified outcomes that both patients and their doctors consider should be included in reviews evaluating effectiveness of (chronic) rhinosinusitis treatments. The Cochrane Ear Nose and Throat Disorders group recommend the use of symptom-based outcomes as the main outcome for future reviews.
We were also interested in how effective social media is for sharing surveys. There is no specific patient group or charity for rhinosinusitis in the UK that we know of, so we had to use a 'blanket' approach using a variety of social media tools (Facebook, Twitter etc). This proved somewhat successful with 64 survey participants (mostly patients) finding their way to the survey via social media. We learned how we would improve this approach e.g. how important personal connections are (to discuss the importance of the survey for example) and allowing more time for survey messages to roll out on social media.
A pilot project supported by the National Institute for Health Research, UK Cochrane Centre, Cochrane ENT Disorders Group and evidENT.