Teneille Gofton

@hpmJC interviews earlier in the disease trajectory (from research point of view) is tough because people don't want to think about being further along the trajectory #hpmJC

@hpmJC recruitment was certainly a challenge for the dyad perspectives. there were many many barriers including unintelligible speech for transcription or inability to participate in conversation once disease was more advanced. #hpmJC

@hpmJC the challenge in figuring out what patients want is often the cognitive changes or communication barriers. this may be one of the elements more frequently seen in neuropal. #jpmJC

@hpmJC Gaining certainty in prognostication would help alleviate some uncertainty and definitely needs further study. we likely will need prospective studies over long periods of time however #hpmJC

@hpmJC Agreed. Certainly there are parallels in other non-cancer palliative care. Especially when it comes to disease trajectory and difficulty predicting prognosis #hpmJC

@hpmJC We did this study at a single centre, I am interested to hear if anyone has had similar experiences in palliative neurology in other practice locations. #hpmJC

@hpmJC Since this study was done at a single centre, I am interested to learn if anyone has had similar experiences at other centres? #hpmJC

Hi Usha, thanks for suggesting this paper #hpmJC

@rafidah72 @hpmJC Since we did our study at a single centre, I am interested to hear if anyone has had similar experiences elsewhere?

@hpmJC Hi, Rafidah. Nephrologist & physician from Malaysia. #hpm #hpmJC

Hello and welcome to #hpmJC. Today we are going to be discussing the specific challenges of palliative care in neurology. First, please introduce yourselves, and don't forget to use #hpmJC

@hpmJC Hello, my name is Teneille @GoftonTeneille , author of the article being discussed. Thanks for inviting me to join in #hpmJC.