Contributions
Abstract: P300
Type: Poster
Abstract Category: Clinical aspects of MS - Natural course
Background: Multiple sclerosis (MS) is renowned for its variable trajectory. Recent advances in individualised prognostication include the development of an online analytical processing (OLAP) tool. Prognostication supported by this tool might promote better-informed treatment decision-making and reduce uncertainty and distress. There is little existing research documenting current provision of prognosis information or the attitudes and preferences of people with MS (pwMS) towards prognosis information. This study explored these issues and determined factors associated with prognosis communication preferences and experiences.
Methods: 3175 members of the UK MS Register completed an online survey about experiences of prognosis-related communication, prognosis information preferences and attitudes towards obtaining personalised estimates from the OLAP tool. MS type, time since symptom onset and diagnosis, coping (brief-COPE), threat information response styles (MBSS), quality of life (EQ5D), MS impact (MSIS), anxiety and depression (HADS) data were also collected.
Results: 53.1% of respondents had never discussed long-term prognosis at neurology appointments. Only a minority (45.8%) felt clear about their prognosis. 76% currently had strong preferences for prognosis information and most (92.8%) anticipated wanting to use the OLAP tool. Participants perceived the tool as relevant at various time-points, acceptable in various settings and felt that prognosis information could inform medical and personal decision-making. Logistic regression analysis found that a comprehensive set of clinical and psychological variables predicted limited variance (3-9%) in whether participants had discussed prognosis, had high preferences for prognosis information, and wanted to use the tool.
Conclusions: In the first large-scale study on this topic we documented limited prognosis communication between health professionals and pwMS and identified an appetite for prognosis information generally and the OLAP tool specifically. The study also highlighted a significant minority of pwMS who have no desire for prognosis forecasting. The tool requires careful study in a clinical context, considering potential benefits and harms and distinguishing which pwMS will want it and benefit from it.
Disclosure:
Dr Ian Galea receives research support from Medical Research Council, Engineering and Physical Sciences Research Council, Multiple Sclerosis Society, Wellcome Trust, National Institute for Health Research, Bio Products Laboratory Limited, Evgen, Merck-Serono, BUPA, IQ Products, Peel Medical Research Trust, Royal College of Surgeons of Edinburgh, Association of British Neurologists, Wessex Medical Research, Smile for Wessex, University of Southampton. Dr Galea is first author on a publication describing the OLAP tool.
Mrs Martina Brown was funded by the National Institute of Health Research, and this project contributed to a postgraduate degree at the University of Southampton.
Dr Laura Dennison and Dr Sarah Kirby have no conflicts of interest to disclose.
Abstract: P300
Type: Poster
Abstract Category: Clinical aspects of MS - Natural course
Background: Multiple sclerosis (MS) is renowned for its variable trajectory. Recent advances in individualised prognostication include the development of an online analytical processing (OLAP) tool. Prognostication supported by this tool might promote better-informed treatment decision-making and reduce uncertainty and distress. There is little existing research documenting current provision of prognosis information or the attitudes and preferences of people with MS (pwMS) towards prognosis information. This study explored these issues and determined factors associated with prognosis communication preferences and experiences.
Methods: 3175 members of the UK MS Register completed an online survey about experiences of prognosis-related communication, prognosis information preferences and attitudes towards obtaining personalised estimates from the OLAP tool. MS type, time since symptom onset and diagnosis, coping (brief-COPE), threat information response styles (MBSS), quality of life (EQ5D), MS impact (MSIS), anxiety and depression (HADS) data were also collected.
Results: 53.1% of respondents had never discussed long-term prognosis at neurology appointments. Only a minority (45.8%) felt clear about their prognosis. 76% currently had strong preferences for prognosis information and most (92.8%) anticipated wanting to use the OLAP tool. Participants perceived the tool as relevant at various time-points, acceptable in various settings and felt that prognosis information could inform medical and personal decision-making. Logistic regression analysis found that a comprehensive set of clinical and psychological variables predicted limited variance (3-9%) in whether participants had discussed prognosis, had high preferences for prognosis information, and wanted to use the tool.
Conclusions: In the first large-scale study on this topic we documented limited prognosis communication between health professionals and pwMS and identified an appetite for prognosis information generally and the OLAP tool specifically. The study also highlighted a significant minority of pwMS who have no desire for prognosis forecasting. The tool requires careful study in a clinical context, considering potential benefits and harms and distinguishing which pwMS will want it and benefit from it.
Disclosure:
Dr Ian Galea receives research support from Medical Research Council, Engineering and Physical Sciences Research Council, Multiple Sclerosis Society, Wellcome Trust, National Institute for Health Research, Bio Products Laboratory Limited, Evgen, Merck-Serono, BUPA, IQ Products, Peel Medical Research Trust, Royal College of Surgeons of Edinburgh, Association of British Neurologists, Wessex Medical Research, Smile for Wessex, University of Southampton. Dr Galea is first author on a publication describing the OLAP tool.
Mrs Martina Brown was funded by the National Institute of Health Research, and this project contributed to a postgraduate degree at the University of Southampton.
Dr Laura Dennison and Dr Sarah Kirby have no conflicts of interest to disclose.