Table 2.

Frequent questions from patients and care partners related to Parkinson disease and future planning

Topic	Examples of questions about the future asked by patients
What to expect due to PD	What am I going to need in the future? (patient, standard care)
	What is going to be coming down the pike? (care partner, palliative care)
	What’s next? And then what’s next, and then what’s next? (care partner, palliative care)
How to gauge PD-related severity	What’s early, late and latest... how do you know? (care partner, palliative care)
	Sometimes you think things are worse and maybe they aren’t, right? What are the trigger points? How do you know that all of a sudden, we’ve entered a new phase without somebody who is experienced saying to you this is different from last year, isn’t it? How do you benchmark it? (care partner, palliative care)
How quickly is PD changing	Are we going faster or are we going slower than the predicted speed? (patient, standard care)
How to plan for future needs	When the disease progresses to a certain point, do I have a plan to handle it? (care partner, standard care)
	How can I prepare? How do I know what he is going to need? Where is he headed? (care partner, palliative care)
Who to ask for support	Who would provide that kind of support for [my care partner]? (patient, standard care)