Research Priorities in Mesothelioma: A James Lind Alliance Priority Setting Partnership
For which topic were research priorities identified?
In which location was the research priority setting conducted?
Europe - United Kingdom
Why was it conducted at all?
In the UK, despite the import and use of all forms of asbestos being banned more than 15 years ago, the incidence of mesothelioma continues to rise. Mesothelioma is almost invariably fatal, and more research is required, not only to find more effective treatments, but also to achieve an earlier diagnosisand improve palliative care.
What was the objective?
to identify the top 10 research priorities relating to mesothelioma (pleural or peritoneal), and specifically to identify those unanswered questions that involved an intervention, in order to aid translation into immediately answerable research questions
What was the outcome?
a ranking list of 13 research questions
How long did the research prioritization take?
December 2013 - November 2014
Which methods were used to identify research priorities?
How were the priorities for research identified exactly?
Step 1: setting up PSP: steering group established, stakeholders and partner organizations identified. Step 2: collecting research questions: survey asking whether responders had ever had a question about the diagnosis, treatment or care of mesothelioma, and not been able to find the answer, total of 453 responses. Step 3: data processing: data cleaning, questions reviewed, themes generated, draft questions formulated, resulting in 52 remaining research questions, check against evidence in systematic reviews, none of the questions already answered. Step 4: interim ranking: survey asking participants to rate importance of the 52 questions, resulting in top 30 questions. Step 5: final prioritization: workshop: small group discussions and small group rankings, plenary discussion
Which stakeholders took part?
Patients, current and bereaved carers, health professionals. Survey: 4563 participants: 103 patients, 242 carers, partners or relatives of mesothelioma patients, 82 health professionals, 26 support organizations and others. Interim ranking: 202 participants: 8 patients, 98 carers, 50 health professionals and 16 support organizations. Workshop: 30 participants: 6 mesothelioma patients, 4 carers, 16 health professionals (surgeons, medical oncologists, clinical oncologists, palliative care and respiratory physicians, specialist nurses), 4 representatives of patient support organizations.
How were stakeholders recruited?
The survey was circulated to known support organizations and health professionals with a request that it be passed on to as many interested parties as possible, as well as being made available on various relevant websites.
Were stakeholders actively involved or did they just participate?
Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group. The steering group consisted of 2 patients, 1 bereaved carer, 9 health professionals (including nurses, surgeons, oncologists, chest physicians and palliative care experts), 4 representatives of patient and family support groups (one of the representatives was also a bereaved carer), representatives from 3 UK-based charities, and 1 information specialist.