Impact of Non-Motor Symptoms in Parkinson's Disease:
A PMD Alliance Survey

Click Image Below to View A Selection of the Survey Results:

Supplementary Table 1. Survey questions submitted to ~3685 PMDAlliance Members (March 19, 2018–March 31, 2018)

Questions for All Respondents
1.     Are you a person with Parkinson’s or a care partner to a person with Parkinson’s?

¨  Person with Parkinson’s

¨  Care partner to a person with Parkinson’s

¨  Non-care partner/family member to a person with Parkinson’s

¨  Other

2.     Who do you or your loved one see about Parkinson’s? Please select all that apply.

¨  Movement disorder specialist

¨  General neurologist

¨  Psychiatrist

¨  General physician

¨  Family physician

¨  Another medical specialist

¨  Other (please specify)

3.     Have you or your loved one ever experienced non-movement–related symptoms (e.g., hallucinations, delusions, sleep, cognitive problems, anxiety, depression) related to Parkinson’s?

¨  Yes

¨  No

Questions for Respondents With Non-Motor Symptoms
4.     Which of the following non-movement–related symptoms have you or your loved one with Parkinson’s ever experienced? Please select all that apply.

¨  Anxiety

¨  Depression

¨  Cognitive challenges (trouble with focus or memory)

¨  Sleep problems or excessive tiredness

¨  Hallucinations (seeing, hearing, feeling, or sensing things no one else can detect)

¨  Delusions (false beliefs, paranoia, believing things others tell you are not true)

¨  Other (please specify)

5.     How many years after diagnosis of Parkinson’s did you or your loved one begin to experience these non-movement symptoms (e.g., hallucinations, delusions, sleep, cognitive problems, anxiety, depression)?

¨  Less than one year

¨  1 to less than 3 years

¨  3 to less than 5 years

¨  5 to less than 7 years

¨  More than 7 years

6.     How challenging is it living with non-movement symptoms related to Parkinson’s disease (e.g., hallucinations, delusions, sleep, cognitive problems, anxiety, depression) compared to motor symptoms (e.g., tremor, stiffness, slow movement, falls)?

¨  Non-movement symptoms are much less challenging to live with compared to motor symptoms

¨  Non-movement symptoms are less challenging to live with compared to motor symptoms

¨  Non-movement symptoms are about the same to live with compared to motor symptoms

¨  Non-movement symptoms are more challenging to live with compared to motor symptoms

¨  Non-movement symptoms are much more challenging to live with compared to motor symptoms

7.     On a scale of 1-5 below, how much do non-movement symptoms (e.g., hallucinations, delusions, cognitive problems, anxiety, depression) impact or disrupt you or your loved one’s quality of life?

1.     Not at all

2.     Very little

3.     Some

4.     Quite a bit

5.     Very much

8.     On a scale of 1-5, fill out the below table to indicate how the onset of non-movement symptoms (e.g., hallucinations, delusions, sleep, cognitive problems, anxiety, depression) associated with Parkinson’s disease impact or disrupt activities in you or your loved one’s daily life. Please select one response in each row.

1-Not at all 2-Very little 3-Some 4-Quite a bit 5-Very much No comment
Making plans with friends or family
Running errands outside of the home (e.g., shopping, banking, dry cleaners)
Planning for events in the future (e.g., vacations, family reunions)
Going out to a restaurant
Going to the movies
Completing household chores (e.g., cooking, cleaning)
Completing self-care (bathing, dressing)
Socializing with friends and family
Sleeping
Partner intimacy
9.     Who did you talk to about non-movement symptoms (e.g., hallucinations, delusions, sleep, cognitive problems, anxiety, depression) related to Parkinson’s disease and their impact on daily life? Please select all that apply.

¨  Spouse or life partner

¨  Adult children specifically

¨  Other immediate family (parents, siblings)

¨  Friends

¨  Neurologist

¨  Movement disorder specialist

¨  Another medical specialist

¨  Support group

¨  Others with Parkinson’s or other care partners

¨  No one

¨  Other (please specify)

10.  On a scale of 1-5 below, how much do you think family, friends, or others in your acquaintance understand the impact of Parkinson’s disease on daily living?

  1. Not at all
  2. Very little
  3. Some
  4. Quite a bit
  5. Very much
11.  What, if anything, do you wish people knew about your experience with Parkinson’s/being a care partner for someone with Parkinson’s?
12.  Who specifically do you wish knew about your experience with Parkinson’s/being a care partner for someone with Parkinson’s? Please select all that apply.

¨  Spouse or life partner

¨  Adult children specifically

¨  Other immediate family (parents, siblings)

¨  Friends

¨  Neurologist

¨  Movement disorder specialist

¨  Another medical specialist

¨  Support group

¨  Others with Parkinson’s or care partners

¨  No one

¨  Other (please specify)

Questions for Respondents Without Non-Motor Symptoms
13.  On a scale of 1-5 below, how much do you think family, friends, or others in your acquaintance understand the impact of Parkinson’s disease on daily living?

¨  Not at all

¨  Very little

¨  Some

¨  Quite a bit

¨  Very much

14.  Did your neurologist or movement disorder specialist educate you or your loved one about non-movement symptoms (e.g., hallucinations, delusions, sleep, cognitive problems, anxiety, depression) of Parkinson’s disease?

¨  Yes

¨  No

15.  When do you think that a physician should provide more information about non-movement symptoms (e.g., hallucinations, delusions, sleep, cognitive problems, anxiety, depression) of Parkinson’s disease?

¨  At the very beginning (even before symptoms may appear)

¨  After living with PD for a few years

¨  Only after onset of symptoms

¨  Not sure

¨  I don’t think the physician needs to educate on this aspect

16.  What, if anything, do you wish your physician would have told you sooner about non-movement symptoms (e.g., hallucinations, delusions, sleep, cognitive problems, anxiety, depression) of Parkinson’s disease?

Question for all respondents

17.  Would you like to learn more about non-movement symptoms associated with Parkinson’s disease? Please select all that apply.

¨  Anxiety

¨  Depression

¨  Cognitive challenges (trouble with focus or memory)

¨  Sleep problems or excessive tiredness

¨  Hallucinations (seeing, hearing, feeling, or sensing things no one else can detect)

¨  Delusions (false beliefs, paranoia)