@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