The Health-Related Quality of Life questionnaire for Patients with Progressive Supranuclear Palsy (PSP-QoL)

Having a health problem can affect a person’s quality of life in many different ways. In order to help us understand how your illness affects your life, we would like to know which of the following problems you have experienced and how problematic each has been. If the problem does not apply to you please note why. If someone helps you to fill in the questionnaire, please make sure the answers reflect your own answers. Should you and your helper disagree on the most correct answer this could be noted at the end. Please note that this list includes many problems which you may never experience.

There are no right or wrong answers and we would like you to …

ð  Think about how you have been feeling during the past four weeks

ð  Put a cross in the box corresponding to the answer that fits your feelings best

In the last 4 weeks have you / No
problem / Slight
problem / Moderate
problem / Marked
problem / Extreme
problem / Not appl. /
1.  Had difficulty moving? / / / / / / /
2.  Had difficulty walking? / / / / / / /
3.  Had difficulty climbing stairs? / / / / / / /
4.  Had difficulty turning in bed? / / / / / / /
5.  Had falls? / / / / / / /
6.  Had problems moving your eyes? / / / / / / /
7.  Had problems opening your eyes? / / / / / / /
8.  Had difficulty eating? / / / / / / /
9.  Had difficulty swallowing? / / / / / / /
10. Had drooling of saliva? / / / / / / /
11. Had problems communicating? / / / / / / /
12. Had difficulty with your writing? / / / / / / /
13. Had difficulty grooming, washing or dressing yourself? / / / / / / /
In the last 4 weeks have you / No
problem / Slight
problem / Moderate
problem / Marked
problem / Extreme
problem / Not appl. /
14. Had difficulty using the toilet on your own? / / / / / / /
15. Had difficulty holding urine? / / / / / / /
16. Had difficulty reading? / / / / / / /
17. Had difficulty doing your hobbies e.g. Playing chess or an instrument / / / / / / /
18. Had problems doing things around the house, e.g. housework, DIY? / / / / / / /
19. Had difficulty enjoying sports, including gardening or walking / / / / / / /
20. Had difficulty going out to see a play or film? / / / / / / /
21. Had difficulty going out for a meal? / / / / / / /
22. Had difficulty using public transport? / / / / / / /
23. Felt not in control of your life? / / / / / / /
24. Felt frustrated? / / / / / / /
25. Felt a bit down, sad or depressed? / / / / / / /
26. Felt pessimistic about the future? / / / / / / /
27. Felt anxious? / / / / / / /
28. Felt isolated? / / / / / / /
29. Had difficulty sleeping not due to problems moving? / / / / / / /
30. Found yourself crying? / / / / / / /
31. Become more withdrawn? / / / / / / /
32. Felt stuck at home? / / / / / / /
33. Felt embarrassed in public? / / / / / / /
34. Felt you cannot show your feelings? / / / / / / /
In the last 4 weeks have you / No
problem / Slight
problem / Moderate
problem / Marked
problem / Extreme
problem / Not appl. /
35. Found your personality is different compared to before your illness? / / / / / / /
36. Felt the relationship with your spouse/partner has changed? / / / / / / /
37. Felt your relationship with other family members has changed? / / / / / / /
38. Seen family less than before you had this condition? / / / / / / /
39. Had problems with your memory? / / / / / / /
40. Found yourself repeating things a lot? / / / / / / /
41. Found your thinking is slower than before the illness? / / / / / / /
42. Found your thinking is muddled? / / / / / / /
43. Felt confused? / / / / / / /
44. Felt not motivated to do things? / / / / / / /
45. Found it difficult to make decisions? / / / / / / /

Please check that you have ticked one box for each question

Experiencing any illness has an effect on one’s life. Please indicate how satisfied you feel overall with your life at the moment by putting a cross on the line between 0 and 100.

0  100

Extremely dissatisfied Extremely satisfied

with my life with my life

Did you complete this questionnaire on your own? 

If you filled in this questionnaire for someone else

- did you fill in the patient’s answers? 

- Or did you answer on behalf of the patient

according to what you thought was correct ? 

Do you have any other comments?

Thank you for completing the questionnaire!

This questionnaire is made available free of charge, with the permission of the authors, to all those undertaking nonprofit and profit making research. Future users may be requested to share data for psychometric purposes. Use of this questionnaire in studies should be communicated to Dr. A. Schrag.