We aim to develop a support tool to improve the management of medications for pain relief, nausea, constipation and drowsiness in patients with significant pain approaching the end of life. Our self- management support tool (SMST) will be developed using a patient centred approach and will be delivered in partnership with health care professionals (HCPs) in two UK regions. We have embedded the principles of experience based co-design into the development, modelling and testing of our
prototype SMST, within a theoretical framework for characterising and designing behaviour change interventions. Ultimately we aim to establish the acceptability and uptake of our prototype SMST and determine the feasibility of evaluating this intervention within a definitive RCT.
Our objectives are divided into three distinct phases which is in-line with the MRC framework on developing and evaluating complex interventions and normalisation process theory.
Development objectives (Phase I)
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Establish a PPI panel
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Establish the content of a prototype SMST and a manualisation strategy that includes a protocol to standardise (i) the training of HCP and (ii) the delivery of the intervention by HPCs to patients and carers
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Understand self-management needs and capabilities of patients and carers.
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Define usual care
Modelling objectives (Phase II)
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Refine and co-design the prototype SMST and manualisation
Feasibility assessment objectives (Phase III)
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Assess acceptability and up-take of the SMST in a mixed-methods observational study involving patients, informal carers and HCPs from 4 palliative care services
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Assess the feasibility of obtaining outcome data for a larger trial
Funder
NIHR Health Technology Assessment Programme
Host institution Leeds Institute of Health Sciences, University of Leeds
PI Professor Mike Bennett University of Leeds
Research team
Dr Matt Mulvey, University of Leeds
Prof Jose Closs, University of Leeds
Hilary Bekker, University of Leeds
Mr David Meads, University of Leeds
Prof Alison Blenkinsopp, University of Bradford
Dr Kate Flemming, University of York
Prof Sue Latter, University of Southampton
Prof Alison Richardson, University of Southampton
Dr Natasha Campling, University of Southampton
Mr Paul Carder West and South Yorkshire and
Bassettlaw Commissioning Support Unit
Prof Amanda Farrin, University of Leeds
Mrs Jean Gallager, PPI representative
Ms Rosie Ratcliff, St Gemma’s Hospice
Prof Stephen Morley, University of Leeds