HDQoL-C.
Please respond to each question – check the box that best reflects your opinions.
| 10 | 9 | 8 | 7 | 6 | 5 | 4 | 3 | 2 | 1 | ||
| (Strongly agree) | (Strongly disagree) | ||||||||||
| Section 1 | |||||||||||
| 1. | How satisfied are you with feeling a part of your social environment? | ||||||||||
| 2. | How satisfied are you with your relationships with your friends? | ||||||||||
| 3. | How satisfied are you with your psychological health? | ||||||||||
| 4. | How satisfied are you with what you have achieved in life? | ||||||||||
| 5. | How satisfied are you with family relationships? | ||||||||||
| 6. | How satisfied are you with your physical health? | ||||||||||
| 7. | How satisfied are you with the professional support you receive? | ||||||||||
| 8. | How satisfied are you with the medical treatment that your HD relative(s) receive(s)? | ||||||||||
| 9. | How satisfied are you with the way other people behave toward the HD person? | ||||||||||
| Section 2 | |||||||||||
| 1r. | I feel sad | ||||||||||
| 2r. | I feel depressed | ||||||||||
| 3r. | I feel a sense of grieving | ||||||||||
| 4r. | I feel a sense of loss | ||||||||||
| 5r. | I feel stressed | ||||||||||
| 6r. | I feel exhausted | ||||||||||
| 7r. | I feel a sense of anguish | ||||||||||
| 8r. | I feel full of fear | ||||||||||
| 9r. | I feel lonely | ||||||||||
| 10r. | I feel guilty | ||||||||||
| 11r. | I feel isolated | ||||||||||
| 12r. | I feel financially disadvantaged | ||||||||||
| 13. | I feel I get enough sleep | ||||||||||
| 14r. | I feel worried about the genetic consequences of HD | ||||||||||
| 15. | I feel that HD has made me a stronger person | ||||||||||
| 16. | I feel supported | ||||||||||
| 17. | I feel that my role as a carer is rewarding | ||||||||||
| 18. | I feel satisfied with my overall QoL | ||||||||||
| 19. | I feel that I can cope | ||||||||||
| 20. | I feel there is hope for the future | ||||||||||
| 21. | I feel comforted by my beliefs (religious, philosophical, or spiritual) | ||||||||||
| 22. | I feel I have somebody to turn to for assistance if I am overwhelmed | ||||||||||
| 23. | I feel happy | ||||||||||
| 24. | I feel that HD brought something positive to my life. | ||||||||||
| 25. | I feel safe. | ||||||||||
| 26. | I feel that my own needs are important to others. | ||||||||||
| 27. | I feel I have enough time for myself. | ||||||||||
| 28r. | I feel embarrassed by the behavior of my HD relative(s). | ||||||||||
| 29r. | I feel ashamed of the behavior of my HD relative(s). | ||||||||||
| 30r. | I feel restricted by having to provide continuous care. | ||||||||||
| 31r. | I feel restricted by the need to maintain secrecy about HD in the family. | ||||||||||
| 32r. | I feel resentful. | ||||||||||
| 33r. | I feel threatened. | ||||||||||
| 34r. | I feel restricted by a regimented daily routine. | ||||||||||
| 35r. | I feel that I have had a duty of care forced on me. | ||||||||||
| 36r. | I feel frustrated by the discrimination of others toward my HD relative(s). | ||||||||||
| 37r. | I feel frustrated by the misconceptions of others toward my HD relative(s). | ||||||||||
| 38r. | I feel like I don’t know who I am anymore. | ||||||||||
Scoring Key. Section 1. Satisfaction with life. Factor 1. Sum Questions 1–6 and calculate the mean. Factor 2. Sum Questions 7–9 and calculate the mean. Section 2. Feelings about living with HD. Factor 1. Sum Questions 1–14 and calculate the mean. Factor 2. Sum Questions 15–27 and calculate the mean. Factor 3. Sum Questions 28–36 and calculate the mean. Items with an r are reverse coded such that a score of 10 = 1, 9 = 2, 8 = 3, …, 1 = 10.