TY - JOUR
T1 - Research priorities in mesothelioma
T2 - A James Lind Alliance Priority Setting Partnership
AU - On behalf of the James Lind Alliance Mesothelioma Priority Setting Partnership Steering Committee
AU - Stephens, R. J.
AU - Whiting, Caroline
AU - Cowan, K. Katherine
AU - Clayson, Helen
AU - Darlison, Liz
AU - Fennell, Dean
AU - Flanagan, John
AU - Foot, Heather
AU - Fryett, Sarah
AU - Hill, Kate
AU - Jarrold, Ian
AU - Knighton, Chris
AU - Lang-Lazdunski, Loic
AU - Lawson, Andrew
AU - Maskell, Nick
AU - Peake, Mick
AU - Popat, Sanjay
AU - Rintoul, Robert C.
AU - Sherlock-Brown, Graham
AU - Slade, Mark
AU - Stephens, Richard
AU - Waller, David
N1 - Publisher Copyright:
© 2015 The Authors.
PY - 2015/8/1
Y1 - 2015/8/1
N2 - Background: 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 diagnosis and improve palliative care. Following a debate in the House of Lords in July 2013, a package of measures was agreed, which included a James Lind Alliance Priority Setting Partnership, funded by the National Institute for Health Research. The partnership brought together patients, carers, health professionals and support organisations to agree the top 10 research priorities relating to the diagnosis, treatment and care of patients with mesothelioma. Methods: Following the established James Lind Alliance priority setting process, mesothelioma patients, current and bereaved carers, and health professionals were surveyed to elicit their concerns regarding diagnosis, treatment and care. Research questions were generated from the survey responses, and following checks that the questions were currently unanswered, an interim prioritisation survey was conducted to identify a shortlist of questions to take to a final consensus meeting. Findings: Four hundred and fifty-three initial surveys were returned, which were refined into 52 unique unanswered research questions. The interim prioritisation survey was completed by 202 responders, and the top 30 questions were taken to a final meeting where mesothelioma patients, carers, and health professionals prioritised all the questions, and reached a consensus on the top 10. Interpretation: The top 10 questions cover a wide portfolio of research (including assessing the value of immunotherapy, individualised chemotherapy, second-line treatment and immediate chemotherapy, monitoring patients with pleural thickening, defining the management of ascites in peritoneal mesothelioma, and optimising follow-up strategy). This list is an invaluable resource, which should be used to inform the prioritisation and funding of future mesothelioma research.
AB - Background: 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 diagnosis and improve palliative care. Following a debate in the House of Lords in July 2013, a package of measures was agreed, which included a James Lind Alliance Priority Setting Partnership, funded by the National Institute for Health Research. The partnership brought together patients, carers, health professionals and support organisations to agree the top 10 research priorities relating to the diagnosis, treatment and care of patients with mesothelioma. Methods: Following the established James Lind Alliance priority setting process, mesothelioma patients, current and bereaved carers, and health professionals were surveyed to elicit their concerns regarding diagnosis, treatment and care. Research questions were generated from the survey responses, and following checks that the questions were currently unanswered, an interim prioritisation survey was conducted to identify a shortlist of questions to take to a final consensus meeting. Findings: Four hundred and fifty-three initial surveys were returned, which were refined into 52 unique unanswered research questions. The interim prioritisation survey was completed by 202 responders, and the top 30 questions were taken to a final meeting where mesothelioma patients, carers, and health professionals prioritised all the questions, and reached a consensus on the top 10. Interpretation: The top 10 questions cover a wide portfolio of research (including assessing the value of immunotherapy, individualised chemotherapy, second-line treatment and immediate chemotherapy, monitoring patients with pleural thickening, defining the management of ascites in peritoneal mesothelioma, and optimising follow-up strategy). This list is an invaluable resource, which should be used to inform the prioritisation and funding of future mesothelioma research.
KW - Interventions
KW - James Lind Alliance
KW - Mesothelioma
KW - Patient involvement
KW - Priority Setting Partnership
KW - Research Priorities
UR - http://www.scopus.com/inward/record.url?scp=84937642128&partnerID=8YFLogxK
U2 - 10.1016/j.lungcan.2015.05.021
DO - 10.1016/j.lungcan.2015.05.021
M3 - Article
C2 - 26115838
AN - SCOPUS:84937642128
SN - 0169-5002
VL - 89
SP - 175
EP - 180
JO - Lung Cancer
JF - Lung Cancer
IS - 2
ER -