Contributions
Abstract: EP1404
Type: Poster Sessions
Abstract Category: Clinical aspects of MS - Clinical assessment tools
Background: Foundational qualitative work with people with Multiple Sclerosis (pwMS), for the Trajectories of Outcomes in Neurological Conditions study, confirmed the influence of coping on quality of life. Pilot quantitative work used the Coping Orientations to Problems Experienced (COPE60) scale, but cognitive debriefing showed that pwMS felt that the wording of the items lacked validity. MS was perceived as different from any previous challenge they had experienced and to their perception, they were drawing on unfamiliar strategies in order to reduce the stress of living with MS.
Objective: To identify the concepts and domains relevant to coping in MS.
Method: One-to-one interviews were done with a wide range of pwMS, transcribed and subjected to thematic analysis, until no new themes emerged.
Results: Saturation of themes was achieved by 43 interviews. Participants were mostly female (62.8%), age range 20-75 years, illness duration 0.5-45 years, with a range of disability as measured by EDSS; 16 (37%) had relapsing, 13 (30%) primary progressive and 14 (33%) secondary progressive disease.
Participants felt MS posed a unique stressor as it is incurable, long-term and the future course cannot be predicted. Coping required acceptance, whether to unexpected relapses or inexorable progression. PwMS talked about the importance of activity to assist with coping, by continuing normal activities and interests, although that might require pacing, flexibility and a stepwise approach. They sought some aspect of their life they felt they could preserve despite their MS, this might be tangible like a hobby or a personal characteristic like religious belief.
PwMS stressed the importance of maintaining an optimistic, determined and self-reliant attitude. To achieve this, they cited a range of strategies, such as 'looking on the bright side', comparing themselves positively to others with MS, reframing, or remembering past successes to boost confidence. Humour was used to defuse the stress of coping with MS.
In practical terms, some pwMS found social support from family, friends, other pwMS and professionals useful for coping. They occasionally used information-seeking, alternative therapies or meditation.
Conclusion: PwMS feel that MS requires them to develop new coping capacities and they use a range of strategies such as acceptance, activity, and cultivating a positive mindset. These themes are reported by pwMS throughout the disease course.
Disclosure: Young CA, Ando H and Cousins R declare no conflicts of interest for this work. The TONiC study was supported by unrestricted grant support from NIHR, MNDA, Walton Neuroscience Charity, Biogen, Genzyme, Merck, Novartis, Roche, Teva.
Abstract: EP1404
Type: Poster Sessions
Abstract Category: Clinical aspects of MS - Clinical assessment tools
Background: Foundational qualitative work with people with Multiple Sclerosis (pwMS), for the Trajectories of Outcomes in Neurological Conditions study, confirmed the influence of coping on quality of life. Pilot quantitative work used the Coping Orientations to Problems Experienced (COPE60) scale, but cognitive debriefing showed that pwMS felt that the wording of the items lacked validity. MS was perceived as different from any previous challenge they had experienced and to their perception, they were drawing on unfamiliar strategies in order to reduce the stress of living with MS.
Objective: To identify the concepts and domains relevant to coping in MS.
Method: One-to-one interviews were done with a wide range of pwMS, transcribed and subjected to thematic analysis, until no new themes emerged.
Results: Saturation of themes was achieved by 43 interviews. Participants were mostly female (62.8%), age range 20-75 years, illness duration 0.5-45 years, with a range of disability as measured by EDSS; 16 (37%) had relapsing, 13 (30%) primary progressive and 14 (33%) secondary progressive disease.
Participants felt MS posed a unique stressor as it is incurable, long-term and the future course cannot be predicted. Coping required acceptance, whether to unexpected relapses or inexorable progression. PwMS talked about the importance of activity to assist with coping, by continuing normal activities and interests, although that might require pacing, flexibility and a stepwise approach. They sought some aspect of their life they felt they could preserve despite their MS, this might be tangible like a hobby or a personal characteristic like religious belief.
PwMS stressed the importance of maintaining an optimistic, determined and self-reliant attitude. To achieve this, they cited a range of strategies, such as 'looking on the bright side', comparing themselves positively to others with MS, reframing, or remembering past successes to boost confidence. Humour was used to defuse the stress of coping with MS.
In practical terms, some pwMS found social support from family, friends, other pwMS and professionals useful for coping. They occasionally used information-seeking, alternative therapies or meditation.
Conclusion: PwMS feel that MS requires them to develop new coping capacities and they use a range of strategies such as acceptance, activity, and cultivating a positive mindset. These themes are reported by pwMS throughout the disease course.
Disclosure: Young CA, Ando H and Cousins R declare no conflicts of interest for this work. The TONiC study was supported by unrestricted grant support from NIHR, MNDA, Walton Neuroscience Charity, Biogen, Genzyme, Merck, Novartis, Roche, Teva.