Sarcoidosis treatment and outcomes: what is most important to you?
A sarcoidosis treatment guideline is being developed by a European Respiratory Society (ERS) working group and is due to be published at the end of 2018. The guideline will be used by doctors and other healthcare professionals to help them treat people with sarcoidosis in the best way possible.
To develop the guideline, the working group will look at the evidence from previous research studies which have looked at sarcoidosis treatment. The evidence for different types of sarcoidosis treatment and its outcomes (end results) will be assessed through a review of the most relevant research studies and recommendations will be made based on the strength of this evidence.
The outcomes that are most important to patients will also be considered to make sure that the recommendations in the guideline take into account aspects of treatment which matter to patients. For example: an individual might have a worsening of their chest (shown on an X-ray) and the doctor prescribes steroids to improve their cough. The patient may choose not to take the steroids because the side effects (possible nausea, sleep problems, mood swings etc) are worse for them than the cough. In that situation, the patient might rate quality of life as more important than imaging.
To help with this please complete the question below. Your responses are anonymous and will feed into the activities of the ERS working group to ensure that patient views are considered.