A survey was distributed online and on paper between February and April 2014, asking people to tell us their questions and experiences about the diagnosis, treatment or care of mesothelioma.
Who were the 453 people who responded to the survey?
- 242 carers or bereaved carers
- 103 people with mesothelioma
- 82 health or social care professionals
- 26 other (people who fell into more than one of these groups or did not say)
What did we find?
- 820 questions were submitted via the survey
- 52 questions were verified as being unanswered
- 5 more questions were identified from systematic reviews of existing research
- 46 out of scope questions were received (to be published separately)
- Only 1 question identified was definitely already answered.
The 52 verified unanswered questions were sent to all of those who had responded to the original survey, plus others who had expressed an interest in being involved in the prioritisation. They were asked to indicate the importance of each question, based on their own experiences. The top 30 questions that resulted from this were then discussed and ranked in order of priority at the workshop on November 10th 2014.