The Parkinson Anxiety Scale (PAS); English version

Persistent anxiety:

Please mark one circle for each item below

In the past four weeks, to what extent did you experience the following symptoms?

A.1.
Feeling anxious or nervous
o
Not at all, or never
o
Very mild, or rarely
o
Mild, or sometimes
o
Moderate, or often
o
Severe, or (nearly) always

A.2.
Feeling tense or stressed
o
Not at all, or never
o
Very mild, or rarely
o
Mild, or sometimes
o
Moderate, or often
o
Severe, or (nearly) always

A.3.
Being unable to relax
o
Not at all, or never
o
Very mild, or rarely
o
Mild, or sometimes
o
Moderate, or often
o
Severe, or (nearly) always

A.4.
Excessive worrying about everyday matters
o
Not at all, or never
o
Very mild, or rarely
o
Mild, or sometimes
o
Moderate, or often
o
Severe, or (nearly) always

A.5.
Fear of something bad, or even the worst, happening
o
Not at all, or never
o
Very mild, or rarely
o
Mild, or sometimes
o
Moderate, or often
o
Severe, or (nearly) always
 Episodic anxiety:

Please mark one circle for each item below

In the past four weeks, did you experience episodes of the followingsymptoms?

B.1.
Panic or intense fear
o
Never
o
Rarely
o
Sometimes
o
Often
o
Nearly always

B.2.
Shortness of breath
o
Never
o
Rarely
o
Sometimes
o
Often
o
Nearly always
B.3.
Heart palpitations or heart beating fast (not related to physical effortor activity)
o
Never
o
Rarely
o
Sometimes
o
Often
o
Nearly always

B.4.
Fear of losing control
o
Never
o
Rarely
o
Sometimes
o
Often
o
Nearly always
 Avoidance behavior:

Please mark one circle for each item below

In the past four weeks, to what extent did you fear or avoid thefollowing situations?

C.1.
Social situations (where one may be observed, or evaluated by others,such as speaking
in public, or talking to unknown people)
o
Never
o
Rarely
o
Sometimes
o
Often
o
Nearly always

C.2.
Public settings (situations from which it may be difficult or embarrassing to escape, such as
queues or lines, crowds, bridges, or publictransportation)
o
Never
o
Rarely
o
Sometimes
o
Often
o
Nearly always
 Beck's Depression Inventory

Please mark one circle for each item below

1.
1 I do not feel sad.
2 I feel sad
3 I am sad all the time and I can't snap out of it.
4 I am so sad and unhappy that I can't stand it.

2.
1 I am not particularly discouraged about the future.
2 I feel discouraged about the future.
3 I feel I have nothing to look forward to.
4 I feel the future is hopeless and that things cannot improve.

3.
1 I do not feel like a failure.
2 I feel I have failed more than the average person.
3 As I look back on my life, all I can see is a lot of failures.
4 I feel I am a complete failure as a person.

4.
1 I get as much satisfaction out of things as I used to.
2 I don't enjoy things the way I used to.
3 I don't get real satisfaction out of anything anymore.
4 I am dissatisfied or bored with everything.

5.
1 I don't feel particularly guilty
2 I feel guilty a good part of the time.
3 I feel quite guilty most of the time.
4 I feel guilty all of the time.

6.
1 I don't feel I am being punished.
2 I feel I may be punished.
3 I expect to be punished.
4 I feel I am being punished.

7.
1 I don't feel disappointed in myself.
2 I am disappointed in myself.
3 I am disgusted with myself.
4 I hate myself.
8.
1 I don't feel I am any worse than anybody else.
2 I am critical of myself for my weaknesses or mistakes.
3 I blame myself all the time for my faults.
4 I blame myself for everything bad that happens.

9.
1 I don't have any thoughts of killing myself.
2 I have thoughts of killing myself, but I would not carry them out.
3 I would like to kill myself.
4 I would kill myself if I had the chance.

10.
1 I don't cry any more than usual.
2 I cry more now than I used to.
3 I cry all the time now.
4 I used to be able to cry, but now I can't cry even though I want to

11.
1 I am no more irritated by things than I ever was.
2 I am slightly more irritated now than usual.
3 I am quite annoyed or irritated a good deal of the time.
4 I feel irritated all the time.

12.
1 I have not lost interest in other people.
2 I am less interested in other people than I used to be.
3 I have lost most of my interest in other people.
4 I have lost all of my interest in other people.

13.
1 I make decisions about as well as I ever could.
2 I I have greater difficulty in making decisions more than I used to.
3 I can't make decisions at all anymore.

14.
1 I don't feel that I look any worse than I used to.
2 I am worried that I am looking old or unattractive.
3 I feel there are permanent changes in my appearance that make me lookunattractive
4 I believe that I look ugly.

15.
1 I can work about as well as before.
2 It takes an extra effort to get started at doing something.
3 I have to push myself very hard to do anything.
4 I can't do any work at all.
 16.
1 I can sleep as well as usual.
2 I don't sleep as well as I used to.
3 I wake up 1-2 hours earlier than usual and find it hard to get back to sleep.
4 I wake up several hours earlier than I used to and cannot get back to sleep.

17.
1 I don't get more tired than usual.
2 I get tired more easily than I used to.
3 I get tired from doing almost anything.
4 I am too tired to do anything.

18.
1 My appetite is no worse than usual.
2 My appetite is not as good as it used to be.
3 My appetite is much worse now.
4 I have no appetite at all anymore.

19.
1 I haven't lost much weight, if any, lately.
2 I have lost more than five pounds.
3 I have lost more than ten pounds.
4 I have lost more than fifteen pounds.

20.
1 I am no more worried about my health than usual.
2 I am worried about physical problems like aches, pains, upset stomach, orconstipation.
3 I am very worried about physical problems and it's hard to think of much else.
4 I am so worried about my physical problems that I cannot think of anything else.

21.
1 I have not noticed any recent change in my interest in sex.
2 I am less interested in sex than I used to be.
3 I have almost no interest in sex.
4 I have lost interest in sex completely.
 PDQ-39 QUESTIONNAIRE

Out of the following difficulties, list three difficulties you find is the most impairing in your daily functioning?
, ,
 Items of the PDQ-Carer (Jenkinson et al. 2012)

Rate the following from 1-4 with Never (0); Occasionally (1); Some- times (2); Often (3); Always (4)

Personal and Social Activities

1 Been prevented from pursuing hobbies and other interests?

2 Felt that relationships with friends have been affected?

3 Felt more withdrawn because of your caring role?

4 Been limited in what you can do socially?

5 Felt that your workload around the house has increased significantly?

6 Found it difficult to see friends and family?

7 Found it difficult to leave the person you care for alone for more than one hour?

8 Felt that you cannot do things on the spur of the moment?

9 Found it difficult to be involved in regular activities which require commitment, e.g.

volunteering work,

regularly meeting friends?

10 Felt unable to go on holiday or take short breaks?

11 Felt responsible for Parkinson’s disease medication being available and taken at

appropriate times?

12 Had to limit outings because you worry that the person you care for won’t be able to cope
 Anxiety and Depression:

13 Felt anxious because of the responsibility of caring? 14 Felt worried about your

own physical health?

15 Felt worried about the future?

16 Felt you lacked the energy and motivation to do the things you enjoy?

17 Felt depressed?

18 Felt worried about what would happen if you were unwell?

Self Care:

19 Found it difficult to get out, for example, to do the shopping? 20 Found the demands of

caring physically difficult?

21 Taken less care with your diet?

22 Felt that your physical health has been affected by your caring role?

23 Paid less attention to your own health (e.g. put off visiting a doctor, ignored

symptoms etc)?

Strain:

24 Found you could not sleep through the night?

25 Thought that your caring role was taken for granted by others? 26 Felt impatient with the

person you care for?

27 Felt exhausted?

28 Felt less in control of your temper than before you became a carer?

29 Felt that you are responsible for everything at home?

 Zerit burden scale:

Question Score

1 Do you feel that your relative asks for more help than he/she needs? 0 1 2 3 4

2 Do you feel that because of the time you spend with your relative
0 1 2 3 4
thatyou don’t have enough time for yourself?

3 Do you feel stressed between caring for your relative and trying
0 1 2 3 4
tomeet other responsibilities for your family or work?

4 Do you feel embarrassed over your relative’s behaviour? 0 1 2 3 4

5 Do you feel angry when you are around your relative? 0 1 2 3 4

6 Do you feel that your relative currently affects our relationships

0 1 2 3 4
withother family members or friends in a negative way?

7 Are you afraid what the future holds for your relative? 0 1 2 3 4

8 Do you feel your relative is dependent on you? 0 1 2 3 4

9 Do you feel strained when you are around your relative? 0 1 2 3 4

10 Do you feel your health has suffered because of your involvementwith

0 1 2 3 4
your relative?

11 Do you feel that you don’t have as much privacy as you would likebecause of
0 1 2 3 4
your relative?

12 Do you feel that your social life has suffered because you are caringfor
0 1 2 3 4
your relative?

13 Do you feel uncomfortable about having friends over because of your

0 1 2 3 4
relative?

14 Do you feel that your relative seems to expect you to take care ofhim/her as if
0 1 2 3 4
you were the only one he/she could depend on?

15 Do you feel that you don’t have enough money to take care of yourrelative in
0 1 2 3 4
addition to the rest of your expenses?

16 Do you feel that you will be unable to take care of your relative muchlonger?
0 1 2 3 4

17 Do you feel you have lost control of your life since your relative’sillness?
0 1 2 3 4

18 Do you wish you could leave the care of your relative to someoneelse?
0 1 2 3 4

19 Do you feel uncertain about what to do about your relative?

0 1 2 3 4
20 Do you feel you should be doing more for your relative?
0 1 2 3 4

21 Do you feel you could do a better job in caring for your relative?
0 1 2 3 4

22 Overall, how burdened do you feel in caring for your relative?

0 1 2 3 4