Simone Veronese

[Simone Veronese @Simone42947336]

Welcome to EAPC 2024

[Simone Veronese @Simone42947336]

@hpmJC I loved this discussion, I hope I can join you in the future.

Thanks on behalf of the PeNSAMI team. just a spot, EAN guidelines on palliative care in MS will be released on early 2019, stay tuned!

[Simone Veronese @Simone42947336]

@NeuroHomecareMD @NeuroUsha @JessBesbris #hpmJC Farrah it is very difficult to say when an advanced MS patient is near the end of life. very disabled and advanced patients having EDSS 8-9,5 is one of the study with more advanced sample that I know. but disability in MS does not necessarily correlates with close death

[Simone Veronese @Simone42947336]

@Dr_Chi_Li @hpmJC #hpmJC this is were unfortunately I cannot comment and why I wished A Solari could join us. Very sorry for not being of help.

[Simone Veronese @Simone42947336]

@arisa_kawashima @hpmJC #hpmJC Yes Arisa, this is my previous study

[Simone Veronese @Simone42947336]

@NeuroUsha @hpmJC #hpmJC yes I understand. this was used since it is suggested by the gold standard framework prognostic paper for palliative care in MS.

[Simone Veronese @Simone42947336]

@hpmJC I think so though I jumped on board when the study had already been designed and my task was to educate and support the clinical team. I also taught SEIQOL-DW to researchers. But at that point it was non longer possible to move from "palliative approach" to "SPCS"#hpmJC

[Simone Veronese @Simone42947336]

@hpmJC @NeuroUsha #hpmJC i think this is a good point. In the other Italian study, a pilot RCT called NEPAL we provided a full SPCS and that made the difference, personal opinion of course. but that was small, in one centre only..

[Simone Veronese @Simone42947336]

@hpmJC #hpmJC and above all could not prescribe, just provide consultation and refer to professionals, that was a weak part of the intervention

[Simone Veronese @Simone42947336]

@hpmJC #hpmJC three teams in the 3 centres were built for the study. 1 physician (neurologist or pall care physician), nurse, social worker, psychologist. they were trained in palliative care before the study, but they did not work together before in a SPCT

[Simone Veronese @Simone42947336]

@hpmJC @NeuroUsha yes usual care did not get any palliative care input, just usual care, which in Italy is primary care (little -no knowledge of palliative care) and neurological care (if and when they can reach the hospital. Rehabilitation depends on were they live...

[Simone Veronese @Simone42947336]

@NeuroUsha @hpmJC Hi everyone, This is Simone Veronese from Italy, I am a coauthor. I hope that Alessandra Solari, the study PI will be able to join us https://t.co/EVbuJk4vpO

[Simone Veronese @Simone42947336]

@Dr_Chi_Li @hpmJC @kesleeman @CSI_KCL Hi everyone, this is Simone Veronese from Italy. I'm a co-author of the paper. first time in my life using twitter. sorry but very confused with this system. Wish Alessandra Solari can join us

[Simone Veronese @Simone42947336]

This is Simone Veronese.

[Simone Veronese @Simone42947336]

@NeuroUsha