Article type
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Abstract
Background: The James Lind Alliance (JLA) supports the National Institute of Health Research (NIHR) to develop research evidence. Many clinical questions about brain and spinal cord tumours remain unanswered – therefore patients, carers and clinicians should work collaboratively to establish the most important research priorities. A Neuro-Oncology Priority Setting Partnership was established following JLA guidelines to identify the top 10 uncertainties in diagnosis, treatment and management of primary central nervous system (CNS) tumours.
Objectives: The primary objective of the Neuro-Oncology PSP was to identify the top 10 treatment uncertainties in diagnosis and management of primary CNS tumours. A secondary objective was to highlight the necessity of a brain tumour community collaborative approach to priority setting in clinical research.
Methods: Stakeholder representatives from a cross-section of the UK brain tumour community were recruited. The scope was clinical interventions for primary brain or spinal cord tumours. The first public survey was widely publicised to patient forums, professional organisations and charities. Questions were categorised and standardised into PICO (participants, interventions, comparisons, outcomes) format. A systematic literature search was performed to ensure the questions were genuine 'uncertainties'. Initial prioritisation by stakeholders was followed by a second public survey. A final workshop determined the top 10 questions using a modified Delphi and Nominal Group technique.
Results: Over 600 individual questions were generated from the initial survey, a patient forum and the UK Database of Uncertainties about the Effects of Treatment (DUETs). After analysis and selection, these reduced to 44 PICO questions. The second public survey reduced these further. The last 25 questions were discussed at a full-day stakeholders’ workshop. The final top 10 priorities were agreed.
Conclusions: The brain tumour community has worked collaboratively to identify the top 10 priorities for clinical research. These will be promoted to governmental, neuroscience and charity funders throughout 2015/16.
Objectives: The primary objective of the Neuro-Oncology PSP was to identify the top 10 treatment uncertainties in diagnosis and management of primary CNS tumours. A secondary objective was to highlight the necessity of a brain tumour community collaborative approach to priority setting in clinical research.
Methods: Stakeholder representatives from a cross-section of the UK brain tumour community were recruited. The scope was clinical interventions for primary brain or spinal cord tumours. The first public survey was widely publicised to patient forums, professional organisations and charities. Questions were categorised and standardised into PICO (participants, interventions, comparisons, outcomes) format. A systematic literature search was performed to ensure the questions were genuine 'uncertainties'. Initial prioritisation by stakeholders was followed by a second public survey. A final workshop determined the top 10 questions using a modified Delphi and Nominal Group technique.
Results: Over 600 individual questions were generated from the initial survey, a patient forum and the UK Database of Uncertainties about the Effects of Treatment (DUETs). After analysis and selection, these reduced to 44 PICO questions. The second public survey reduced these further. The last 25 questions were discussed at a full-day stakeholders’ workshop. The final top 10 priorities were agreed.
Conclusions: The brain tumour community has worked collaboratively to identify the top 10 priorities for clinical research. These will be promoted to governmental, neuroscience and charity funders throughout 2015/16.