Huntington’s Disease Quality of Life
Battery for Carers.
(HDQoL-C)
Aimee Aubeeluck and Heather Buchanan
Correspondence to:
Dr Aimee Aubeeluck CPsychol FHEA
Registered Practitioner Psychologist (HPC)
Director: Graduate Entry Nursing
School of Nursing, Midwifery and Physiotherapy
Division of Nursing
University of Nottingham
Melbourne House
96 Osmaston Road
Derby
DE1 2RD
Tel: +44 (0)1332 724906 (direct dial)
© Aubeeluck
2
Contents
1 Introduction
3
2 Using the HDQoL-C
3
3 The HDQoL-C
4
4 Calculating your results
11
3
1 Introduction
The HDQoL-C is a Huntington’s Disease Specific questionniare for
measuring quality of life in family caregivers of persons with Huntington’s
Disease.
Completing the HDQoL-C may help you to identify aspects of your life
quality that are already good and other aspects that you would like to see
improved. You can use this information to understand your circumstances
better and to identify key points that you might want to discuss with
your health care professional.
2 Completing the HDQoL-C
The HDQoL- will take you about 10-20 minutes to complete. Try and answer
all the questions. If you are unsure about which response to give to a
question, please choose the ONE that seems most appropriate (this is
often your initial response).
There are 4 sections to the questionnaire:
1) This section records information about you and your personal
circumstances.
You may find that some of your personal
circumstances impact on your quality of life, for example, your
income, how long you have been caring for a family member, whether
you have any health conditions yourself etc. Completing this section
may allow you to build up a picture of your circumstances in a way
that you haven’t done before and allow you to take a look in on
yourself and the things you are coping with.
2) This section asks about your caregiving role and will allow you to
identify areas of your life which are running smoothly and other areas
where you may be struggling with your caregivng role.
3) This section records how satisfied you are with life in general and will
enable you to identify any areas of your life that you are very happy
with and other areas where you would like to see changes.
4) This section asks about your feelings and will help you to identify
areas in which you are coping and other areas where you may not be
coping quite so well.
4
Section 1
This section asks for information about yourself.
1 a)
What is your year of birth?
1 b)
What is your gender?
………………………………………
 Male
 Female
1 c)
What is the highest qualification you hold?
 No qualifications
 GCSE’s
 A level’s
 Diploma
 University degree
 Post-graduate degree
1 d)
What is your marital status?
 Single
 Married
 Partnership
 Separated
 Divorced
 Widowed
1 e)
1 f)
1 g)
Approximately how long have you known of the
presence of HD in your family?
How long have you been caring for an HD
affected family member?
Are you the main carer for the person with HD?
………
Years
………
Years
 YES
 NO
1 h)
The affected person is my:
 Sibling
 Spouse/Partner
 Parent
 Child
 Other
1 i)
Have you previously cared for any other HD
affected person?
-
1 j)
if so, what is /was their relationship to you?
The affected person is my (e.g. spouse,
sister, parent etc):
Do you have children at risk / symptomatic?
 YES
 NO
…………………………………..
 YES
 NO
1 k)
How many family members live in your
household?
……………..………………..…
5
2
What is your gross household income?
3
Do you have any disabilities or medical
conditions? (e.g. problems with sight, hearing,
physical health)
- if so, please specify the type of disability and
treatment required
4
5
6
 YES
 NO
………………………………………
………………………………………
Approximately how many hours do you spend
on the following each week?
- hours paid work
……………………………………..
- hours unpaid childcare
……………………………………..
- hours caring for HD affected relative(s)
………………………………………
Please specify any difficulties you experience
caring for your HD affected relative(s) (e.g.
dealing with behaviour, physical problems,
emotional problems)
………………………………………
Is your home suitably adapted for your family’s
needs?
- if no, please specify the areas of concern and
the problem that it causes (e.g. no stair lift
makes moving patient difficult)
7
£……………………………………
Approximately how often in an average month
do you get to take part in a social activity or
hobbie (e.g. eat out, got to church, visit a
friend)
……………………………………..
……………………………………….
 YES
 NO
………………………………………
………………………………………
………………………………………
…………………. times
6
Section 2
Think about how you feel about your role as a carer, your health and your quality of life.
Please circle the number that most accurately represents your situation.
For example, a statement might read:
How satisfied are you with the SUPPORT YOU GET?
dissatisfied
0
1
2
3
4
5
6
7
8
9
satisfied
10
You should circle the number that best fits how satisfied you are with the support you receive. So
if you are totally satisfied with the support you receive from others, you would circle number 10.
This first set of questions asks for information about different aspects of your
role as a carer.
Please circle the number that best describes your situation.
1.How often are you restricted by the need to maintain a regimented daily routine?
Almost never
Almost always
0
1
2
3
4
5
6
7
8
9
10
2.How often do you receive appropriate help from social services?
Almost never
Whenever I need it
0
1
2
3
4
5
6
7
8
9
10
3.How often do you have access to professionals that have specialised knowledge of HD
and understand its implications?
Almost never
Almost always
0
1
2
3
4
5
6
7
8
9
10
4.How much support are you given by health care professionals?
None whatsoever
As much as I need
0
1
2
3
4
5
6
7
8
9
10
5.How often do the genetic consequences of HD impact upon your caring role?
Almost never
Almost always
0
1
2
3
4
5
6
7
8
9
10
6.How often do you have access to appropriate care facilities?
Almost never
0
1
2
3
4
5
6
7
8
Almost always
9
10
7.How often do you receive any practical support you need?
Almost never
0
1
2
3
4
5
6
7
8
Almost always
9
10
8.How often do you experience a conflict of interest between what you want and what
your HD affected relative wants?
Almost never
Almost always
0
1
2
3
4
5
6
7
8
9
10
9.How often do you sleep well?
Almost never
0
1
2
3
4
5
6
7
8
Almost always
9
10
7
Section 3
The next set of questions asks how satisfied you are with different areas of your
life.
Please circle the number that best describes how satisfied you are with each
area of your life.
1.How satisfied are you with your HEALTH?
dissatisfied
0
1
2
3
4
5
7
8
9
satisfied
10
2.How satisfied are you with what you ACHIEVE IN LIFE?
dissatisfied
0
1
2
3
4
5
6
7
8
9
satisfied
10
6
3.How satisfied are you with your CLOSE RELATIONSHIPS WITH FAMILY OR FRIENDS?
dissatisfied
satisfied
0
1
2
3
4
5
6
7
8
9
10
4.How satisfied are you with HOW SAFE YOU FEEL?
dissatisfied
0
1
2
3
4
5
6
9
satisfied
10
5.How satisfied are you with FEELING A PART OF YOUR COMMUNITY?
dissatisfied
0
1
2
3
4
5
6
7
8
9
satisfied
10
6.How satisfied are you with YOUR OWN HAPPINESS?
dissatisfied
0
1
2
3
4
5
6
satisfied
10
7
7
8
8
9
7.How satisfied are you with THE TREATMENT THAT YOUR HD AFFECTED RELATIVE
RECEIVES?
dissatisfied
satisfied
0
1
2
3
4
5
6
7
8
9
10
8.How satisfied are you with YOUR OVERALL QUALITY OF LIFE?
dissatisfied
0
1
2
3
4
5
6
7
8
9
satisfied
10
8
Section 4
This next set of questions asks how you feel about different aspects of your life.
Please circle the number that best describes how you feel about each area of
your life.
1. I feel GUILTY
never
0
1
5
6
7
8
9
always
10
2. I feel FINANCIALLY DISADVANTAGED
never
0
1
2
3
4
5
6
7
8
9
always
10
3. I feel ISOLATED
never
0
1
5
6
7
8
9
always
10
4. I feel THERE IS HOPE for the future
never
0
1
2
3
4
5
6
7
8
9
always
10
5. I feel EXHAUSTED
never
0
1
2
3
4
5
6
7
8
9
always
10
6. I feel SUPPORTED
never
0
1
2
3
4
5
6
7
8
9
always
10
7. I feel SAD OR DEPRESSED
never
0
1
2
3
4
5
6
7
8
9
always
10
8. I feel STRESSED
never
0
1
2
4
5
6
7
8
9
always
10
9. I feel WORRIED ABOUT THE GENETIC CONSEQUENCES OF HD
never
0
1
2
3
4
5
6
7
8
9
always
10
10. I feel MY OWN NEEDS ARE NOT IMPORTANT TO OTHERS
never
0
1
2
3
4
5
6
7
9
always
10
2
2
3
3
3
4
4
8
11. I feel COMFORTED BY THE BELIEF THAT ONE DAY THERE WILL BE A CURE FOR HD
never
always
0
1
2
3
4
5
6
7
8
9
10
12. I feel THAT HD BROUGHT SOMETHING POSITIVE TO MY LIFE
never
0
1
2
3
4
5
6
7
8
9
always
10
9
13. I feel COMFORTED BY MY BELIEFS
never
0
1
2
3
4
5
6
7
8
9
always
10
14. I feel THAT I CAN COPE
never
0
1
2
3
5
6
7
8
9
always
10
15. I feel THAT HD HAS MADE ME A STRONGER PERSON
never
0
1
2
3
4
5
6
7
8
9
always
10
16. I feel THAT I HAVE HAD A “DUTY OF CARE” FORCED ON ME
never
0
1
2
3
4
5
6
7
8
9
always
10
17. I feel LIKE I DON’T KNOW WHO I AM ANYMORE
never
0
1
2
3
4
5
6
9
always
10
4
7
8
AND FINALLY, please think about:
1
What do you think would most improve your quality of life as a caregiver:
10
4
Calculating your results
PART 1 – personal information: You can read through this information to
look at your circumstances from an objective perspective. You may find it
surprising how much you cope with and manage on a daily basis.
PART 2 – Caregiving information:
First step!!
Questions 1, 5 and 8 are all negatively worded so you need to
reverse or swap them BEFORE you do anything else:
This is very easy to do: for these 3 questions, change your score in
the following way:
0 becomes 10
1 becomes 9
2 becomes 8
3 becomes 7
4 becomes 6
5 stays as 5
6 becomes 4
7 becomes 3
8 becomes 2
9 becomes 1
10 becomes 0
You can use the box here for ease:
Question
My original score
1
5
8
My reversed score
Second step:
Add up the 9 scores to give a total score out of 90.
You can use the box here for ease:
Question
score
1 (reversed)
2
3
4
5 (reversed)
6
7
8 (reversed)
9
TOTAL
11
What does your score mean?
A high score (63 or more) would suggest your caregiving role is
having very little impact on your quality of life.
A middle score (between 37 and 62) would suggest your caregiving
role is having a moderate
A low score (36 or less) would suggest your caregiving role is
having a big on your quality of life.
PART 3: satisfaction with life:
Simply add up the 8 scores to give a score out of 80.
What does your score mean?
A high score (56 or more) would suggest you are very satisfied with
your life.
A middle score (between 33 and 55) would suggest you are
moderately satisfied with your life.
A low score (32 or less) would suggest would suggest you are
dissatisfied with your life.
PART 4: Feelings about life:
First step!!
Questions 1,2,3,5,7,8,9,10,16 and 17 are all negatively worded so
you need to reverse or swap them BEFORE you do anything else:
This is very easy to do: for these 10 questions, change your score
in the following way:
0 becomes 10
1 becomes 9
2 becomes 8
3 becomes 7
4 becomes 6
5 stays as 5
6 becomes 4
7 becomes 3
8 becomes 2
9 becomes 1
10 becomes 0
12
You can use the box here for ease:
Question
My original score
1
2
3
5
7
8
9
10
16
17
My reversed score
Second step:
Add up the 17 scores to give a total score out of 170.
You can use the box here for ease:
Question
score
1 (reversed)
2 (reversed)
3 (reversed)
4
5 (reversed)
6
7 (reversed)
8 (reversed)
9 (reversed)
10 (reversed)
11
12
13
14
15
16 (reversed)
17 (reversed)
TOTAL
What does your score mean?
A high score (119 or more) would suggest how you feel is having
very little impact on your quality of life.
A middle score (between 69 and 118) would suggest how you feel is
having a moderate impact on your quality of life.
A low score (68 or less) would suggest how you feel is having a big
impact on your quality of life.