Contributions
Abstract: EP1335
Type: Poster Sessions
Abstract Category: Clinical aspects of MS - Natural course
Background: About 50% of relapsing multiple sclerosis (MS) patients convert to secondary progressive (SPMS) 15 years after clinical onset. Despite the complexity and potential impact of this transition, no targeted interventions to promote patients´ wellbeing are available. Managing the Transition to SPMS (ManTra) aims to develop and assess the efficacy of a user-led resource for newly diagnosed SPMS patients. Here, we describe a key project phase: assessment of the experiences and needs of SPMS transition.
Methods: Training on qualitative methods was performed from February 2017 to March 2018 in Milan, and consisted of 5 one-day meetings. Participants were 10 investigators from 6 centres. Personal semi-structured interview (PSI) and focus group meeting (FGM) grids were developed and refined during the training. The methods of framework analysis was applied to the PSI and FGM transcripts. The transcripts were analysed in six successive steps, each of which embodies an increasing level of generalisation. To enhance the validity of this process, two researchers analysed the transcripts independently (FGMs, steps 1-4; PSIs, steps 1-5) and jointly (step 6).
Results: With regard to the Italian sample, 15 PSIs were performed (N=7, Milan; N=4, Chieti; N=4, Bari). The sample was composed of 8 women, mean age 48.7 (SD 7.5), median EDSS 6.0 (range 4.0-7.0). The 3 FGMs were conducted (May 24, 25, 2017: neurologists, other HPs; September 25, 2017: significant others). Framework analysis revealed 104 sub-categories, grouped into 17 categories and four themes. All the stakeholders agreed on the following unmet needs: Management of SPMS at the MS Centre; Psychological support; MS HP training; Communication and information; Job and welfare.
Conclusion: We observed a general lack of communication of the transition by neurologists or other HPs and low awareness by SPMS patients who massively used defensive mechanisms. All stakeholders unanimously asked for a better management of the MS centre, provision of psychological support, specific HP training, access to more information about SPMS, dedicated worker protection policies and job out-placement in this disease phase.
Disclosure: None
Abstract: EP1335
Type: Poster Sessions
Abstract Category: Clinical aspects of MS - Natural course
Background: About 50% of relapsing multiple sclerosis (MS) patients convert to secondary progressive (SPMS) 15 years after clinical onset. Despite the complexity and potential impact of this transition, no targeted interventions to promote patients´ wellbeing are available. Managing the Transition to SPMS (ManTra) aims to develop and assess the efficacy of a user-led resource for newly diagnosed SPMS patients. Here, we describe a key project phase: assessment of the experiences and needs of SPMS transition.
Methods: Training on qualitative methods was performed from February 2017 to March 2018 in Milan, and consisted of 5 one-day meetings. Participants were 10 investigators from 6 centres. Personal semi-structured interview (PSI) and focus group meeting (FGM) grids were developed and refined during the training. The methods of framework analysis was applied to the PSI and FGM transcripts. The transcripts were analysed in six successive steps, each of which embodies an increasing level of generalisation. To enhance the validity of this process, two researchers analysed the transcripts independently (FGMs, steps 1-4; PSIs, steps 1-5) and jointly (step 6).
Results: With regard to the Italian sample, 15 PSIs were performed (N=7, Milan; N=4, Chieti; N=4, Bari). The sample was composed of 8 women, mean age 48.7 (SD 7.5), median EDSS 6.0 (range 4.0-7.0). The 3 FGMs were conducted (May 24, 25, 2017: neurologists, other HPs; September 25, 2017: significant others). Framework analysis revealed 104 sub-categories, grouped into 17 categories and four themes. All the stakeholders agreed on the following unmet needs: Management of SPMS at the MS Centre; Psychological support; MS HP training; Communication and information; Job and welfare.
Conclusion: We observed a general lack of communication of the transition by neurologists or other HPs and low awareness by SPMS patients who massively used defensive mechanisms. All stakeholders unanimously asked for a better management of the MS centre, provision of psychological support, specific HP training, access to more information about SPMS, dedicated worker protection policies and job out-placement in this disease phase.
Disclosure: None