Questionnaire for Parents of a Child below 18 years old with Haemophilia
Contents:
Introduction
Section 1: Screening questions
Section 2: Education, employment and job issues
Section 3: Family and personal life
Section 4: Personal well-being
Section 5: Your son’s haemophilia and its treatment
Section 6: Sources of information about haemophilia
Section 7: The future
Section 8: Important issues
Section 9: Analysis questions
Introduction
You have been asked to complete this questionnaire to help research and gather information that will guide those responsible for healthcare in understanding and meeting the needs of children and adolescents living with haemophilia, and the needs of their parents and carers.This questionnaire is only appropriate if you have a child below the age of 18 who has been diagnosed with haemophilia. If you, your self have been diagnosed with haemophilia and you are answering this for you alone please contact the organisation who has invited you to complete this questionnaire, as a specific document has been designed for you.
The questions asked will assess your attitudes and experiences of life, with many, but not all, being directly related to living with haemophilia.
The questionnaire will take approximately 40 minutes to complete.
We would like to reassure you that any information you give will be treated confidentially, without reference to individual personal information that would identify any respondent.
If you have any concerns about your health, please speak with your doctor or other healthcare professional. If you have specific comments about the questionnaire please contact the organisation who has invited you to participate.
Please indicate in the box below that you understand and agree to the following statements:
- I understand that this research is being carried out within the relevant codes of conduct including, but not limited to, MRS, ASOCS, CASRO, BHBIA, EphMRA, ISPOR.
- I understand that the aim of this research is to gain my views for research purposes only and is not intended to influence my views.
- I understand that the identity of respondents is confidential and none of my details will be passed on to any 3rd party.
- I understand that any information I disclose will be treated in the strictest confidence and the results of the research aggregated to provide an overall picture of attitudes to the areas being covered in this questionnaire. No answers will be connected to me as an individual.
- I understand that I have the right to withdraw from the questionnaire at any time and to withhold information as I see fit.
- The organisers of this questionnaire carry insurance to pay no-fault compensation, where no legal liability arises or is admitted, for any harm caused by participation in this questionnaire.
Agree and proceed☐
Page 1 of 55
Section 1: Screening questions
We will start by asking you a few questions to ensure that the questionnaire is appropriate for you:S1. / Are you…?
SELECT ONE ANSWER ONLY
An individual with haemophilia / ☐ / In this case you should complete a different questionnaire specially designed for people with haemophilia. Please use the patient (PWH) questionnaire.
The parent of one or more sons aged under 18 years who has haemophilia / ☐ / GO TO S2
Neither of these / ☐ / In this case the questionnaire is not appropriate for you. Please destroy the questionnaire.
S2. / How many sons with haemophilia do you have? (Including any who may be aged over 18 years)
One / ☐
Two / ☐
Three / ☐
Four / ☐
Five / ☐
More than five / ☐
GO TO S3
S3. / What is the year of birth of your son(s) that have haemophilia? (Please also include any sons that you have with haemophilia even if aged over 18 years).Pleaseenter the year of birth of each son with haemophilia, starting with the eldest
1st (oldest) Son / 2nd Son
(If applicable) / 3rd Son
(If applicable) / 4th Son
(If applicable) / 5th Son
(If applicable)
Year of birth / Year of birth / Year of birth / Year of birth / Year of birth
IF YOU DO NOT HAVE ANY SONS UNDER THE AGE OF 18 WITH HAEMOPHILIA THIS QUESTIONNAIRE IS NOT APPROPRIATE FOR YOU. PLEASE DESTROY THIS QUESTIONNAIRE.
IF YOU DO HAVE SON(S) DIAGNOSED WITH HAEMOPHILIA WHO ARE BELOW 18 YEARS OF AGE PLEASE GO TO S4.
S4. / Please confirm the type of haemophilia that (each of) your son(s) with haemophilia has now:1st Son / 2nd Son / 3rd Son / 4th Son / 5th Son
Haemophilia A(without inhibitors) / ☐ / ☐ / ☐ / ☐ / ☐
Haemophilia B (without inhibitors) / ☐ / ☐ / ☐ / ☐ / ☐
Haemophilia (A or B)with inhibitors / ☐ / ☐ / ☐ / ☐ / ☐
Other Bleeding disorder / ☐ / ☐ / ☐ / ☐ / ☐
AT LEAST ONE SON MUST BE CODE 1 OR 2 OR 3, OTHERWISE THIS QUESTIONNAIRE IS NOT APPROPRIATE FOR YOU, PLEASE DESTROY THIS QUESTIONNAIRE.
If you have more than one son with haemophilia then all of the remaining questions should be answered when you are thinking about your oldest son with haemophilia who is still aged under 18 years.If he has haemophilia A (without inhibitors) answer S5 and S6
If he has haemophilia B (without inhibitors) answer S7 and S8
If he has haemophilia A or B with inhibitors answer S9 and S10
If none of your sons have any of these conditions then the questionnaire is not appropriate for you. Please destroy the questionnaire.
S5. / Is his haemophilia A treated with…?
SELECT ALL THAT APPLY
Yes / No
a)Replacement FVIII (Factor VIII) / ☐ / ☐
b)Cryoprecipitate / ☐ / ☐
c)Fresh Frozen Plasma (FFP) / ☐ / ☐
d)DDAVP (desmopressin) / ☐ / ☐
e)Other (PLEASE SPECIFY) / ☐ / ☐
______
GO TO S6
S6. / Has he experienced a spontaneous bleed (a bleed for no apparent reason) into one or more joints in the last 12 months?SELECT ONE ANSWER ONLY
Yes / ☐
No / ☐
Don’t know / ☐
If you have answered ‘yes’ to S5a (he is treated with Replacement FVIII) OR ‘yes’ to S6: GO TO S11.
If you have not answered ‘yes’ to S5a OR S6 then the questionnaire is not appropriate for you. Please destroy the questionnaire.
S7. / Is his haemophilia B treated with…?SELECT ALL THAT APPLY
Yes / No
a) Replacement FIX (Factor IX) / ☐ / ☐
b) Fresh Frozen Plasma (FFP) / ☐ / ☐
c) Other (PLEASE SPECIFY)
______ / ☐ / ☐
GO TO S8
S8. / Has he experienced a spontaneous bleed (a bleed for no apparent reason) into one or more joints in the last 12 months?SELECT ONE ANSWER ONLY
Yes / ☐
No / ☐
Don’t know / ☐
If you have answered ‘yes’ to S7a (he is treated with Replacement FIX) OR ‘yes’ to S8 GO TO S11.
If you have not answered ‘yes’ to S7a OR S8 then the questionnaire is not appropriate for you.Please destroy the questionnaire.
S9. / Is he treated with a factor concentrate primarily intended for patients with inhibitors? SELECT ONE ONLYYes / ☐
No / ☐
Don’t know / ☐
S10. / Has he experienced a bleed into one or more joints in the last 12 months?
SELECT ONE ONLY
Yes / ☐
No / ☐
Don’t know / ☐
If you have answered ‘yes’ to S9 (he is treated with a factor concentrate intended primarily
for patients with inhibitors) or ‘yes’ to S10 GO TO S11.
If you have not answered ‘yes’ to S9 OR S10 then the questionnaire is not appropriate for you. Please destroy the questionnaire.
S11. / Please record your own age:Age in number of years
GO TO S12
S12. / Please record your gender:SELECT ONE ANSWER ONLY
Male / ☐ / CONTINUE
Female / ☐ / CONTINUE
GO TO W1
Section 2: Education, employment and job issues
The following set of questions is about yourself, your work and your education:
W1. / At what age did you leave/finish your full time formal education including school and any university or post-graduate studies?Finished/left full time education at age / GO TO W2
(Years)
No formal education / ☐ / GO TO W2
Not completed – still in full time education / ☐ / GO TO W5
Don’t Know / Decline to answer / ☐ / GO TO W2
W2. / What is your employment status?
SELECT ONE ANSWER ONLY
Employed full time (more than 30 hours per week) / ☐ / GO TO W3a
Employed part time (up to 30 hours per week) / ☐ / GO TO W3a
Self-employed / ☐ / GO TO W3a
Not employed but looking for work / ☐ / GO TO W3b
Not employed and not looking for work / ☐ / GO TO W3b
Retired / ☐ / GO TO W3b
Short-term disability / ☐ / GO TO W3b
Long-term disability / ☐ / GO TO W3b
Homemaker (housewife / househusband) – no other work / ☐ / GO TO W3b
Other (PLEASE SPECIFY) / ☐ / GO TO W3b
______
W3a. / Which of the following best describes the industry in which you work?
SELECT ONE ANSWER ONLY
Agriculture / ☐
Computer Sciences/Information Technology / ☐
Construction/Manufacturing/Production / ☐
Education/Research/Government / ☐
Healthcare / ☐
Management/Administrative/Finance/Law / ☐
Food/Hospitality Services / ☐
Transportation/Warehousing / ☐
Retail/Wholesale / ☐
Sales/Marketing/Communications / ☐
Other (SPECIFY) / ☐
______
GO TO W3b
W3b. / How would you describe your typical day’s main activity? Is it…SELECT ONE ANSWER ONLY
Light manual labour, for example housework or light gardening / ☐
Moderate manual labour / ☐
Strenuous manual labour / ☐
Office work/studying / ☐
Mainly inactive / ☐
Other (SPECIFY) / ☐
______
GO TO W4
W4. / Which of the following statements, if any, apply to you?PLEASE SELECT ALL THAT APPLY
I believe that I have lost a job in the past because of caring for a child with haemophilia / ☐
I have had to voluntarily leave a job in the past because of caring for a child with haemophilia / ☐
I believe that I have been overlooked for promotion in the past because of caring for a child with haemophilia / ☐
I believe that I have not been hired for a job because of the need to care for a child with haemophilia / ☐
I believe that having a child with haemophilia has helped me get a job / ☐
I selected my job/training to take into account the needs relating to caring for a child with haemophilia / ☐
Caring for a child with haemophilia has had no impact on my choice of job / ☐
Current treatment of my child allows me to work in most situations / ☐
I have to restrict the number of hours I work due to caring for a child with haemophilia / ☐
I have to work flexible hours due to caring for a child with haemophilia / ☐
None of the above / ☐
GO TO W5
W5. / To what extent has caring for a child with haemophilia had a negative impact on your working life?SELECT ONE ANSWER ONLY
A very large negative impact / ☐
A moderate negative impact / ☐
A small negative impact / ☐
No negative impact / ☐
Decline to answer / ☐
GO TO A1
ActivitiesA1. / Which of the following physical activities does your (eldest, under the age of 18 with haemophilia)son currently take part in?
PLEASE SELECT ALL THAT APPLY
A2. / Which of the listed activities did he take part in previously, but is no longer able to do now or you now think are too risky to continue.
PLEASE SELECT ALL THAT APPLY
A3. / And which of the following activities would he like to do, but is unable to because of his haemophilia?
PLEASE SELECT ALL THAT APPLY
A1
Currently / A2
Previously / A3
Would like to, but unable
1 / Archery / ☐ / ☐ / ☐
2 / Basketball / ☐ / ☐ / ☐
3 / Boxing / ☐ / ☐ / ☐
4 / Cycling / ☐ / ☐ / ☐
5 / Dancing / ☐ / ☐ / ☐
6 / Fishing / ☐ / ☐ / ☐
7 / Frisbee / ☐ / ☐ / ☐
8 / Gardening / ☐ / ☐ / ☐
9 / Golf / ☐ / ☐ / ☐
10 / Jogging / ☐ / ☐ / ☐
11 / Martial Arts / ☐ / ☐ / ☐
12 / Physiotherapy sessions / ☐ / ☐ / ☐
13 / Regular visits to a gym/fitness centre / ☐ / ☐ / ☐
14 / Regular walking for fitness and pleasure / ☐ / ☐ / ☐
15 / Rugby / ☐ / ☐ / ☐
16 / Sailing / ☐ / ☐ / ☐
17 / Soccer / football / ☐ / ☐ / ☐
18 / Softball / ☐ / ☐ / ☐
19 / Swimming / ☐ / ☐ / ☐
20 / Table tennis / ☐ / ☐ / ☐
21 / Tai Chi / ☐ / ☐ / ☐
22 / Tennis / ☐ / ☐ / ☐
23 / Other (PLEASE SPECIFY) / ☐ / ☐ / ☐
______
24 / None of the above / ☐ / ☐ / ☐
GO TO F1a
Section 3: Family and personal life
The following set of questions is about your family: (May we remind you that everything you say is in complete confidence).F1a. / What is your marital status?
SELECT ONE ANSWER ONLY
Married / in a long term relationship / ☐
Divorced/separated / ☐
Single / ☐
Widower / ☐
Decline to answer / ☐
GO TO F1b
F1b. / Do you currently live…?PLEASE SELECT ALL THAT APPLY
With yourwife /husband (with or without your own children) / ☐
Alone / ☐
With other family members (e.g. including your own parents/your parents-in-law) / ☐
With others / ☐
Decline to answer / ☐
GO TO F2
F2. / As well as the son/sons that you described in S3 do you have other children?SELECT ONE ANSWER ONLY
Yes / ☐ / GO TO F3
No / ☐ / IF YOU ARE FEMALE GO TO F4a
IF YOU ARE MALE GO TO F10a
F3. / Please enter the year of birth of the other children that you have in addition to the son/sons that you described in S3?
Oldest / Next oldest / Next oldest / Next oldest
Son(s) confirmed not to have haemophilia
Son(s) not yet confirmed to have haemophilia or not
Daughter(s) diagnosed as a carrier of haemophilia
Daughter(s) confirmed not to be a carrier of haemophilia
Daughter(s) who is not yet confirmed to be or not to be a carrier of haemophilia
IF YOU ARE FEMALE PLEASE CONTINUE WITH F4a.
IF YOU ARE MALE PLEASE GO TO F10a.
F4a. / Do you regard yourself as a carrier of haemophilia?Yes / ☐ / GO TO F4b
No / ☐ / GO TO F8
Decline to answer / ☐ / GO TO F8
F4b. / Before your first son with haemophilia was born, did you know that there was a possibility that you might be a carrier of haemophilia?
Yes / ☐ / GO TO F5
No / ☐ / GO TO F8
Decline to answer / ☐ / GO TO F8
F5. / Had you been confirmed as a carrier or simply suspected this due to the family history?
SELECT ONE ANSWER ONLY
Confirmed as a carrier / ☐
Suspected due to family history / ☐
IF YOU ARE MARRIEDOR DIVORCED OR A WIDOW ANSWER F6.
OTHERWISE GO TO F8.
F6. / When did the father of your son know you might be a carrier of haemophilia?SELECT ONE ANSWER ONLY
Before we were married / ☐
After we were married but before I became pregnant / ☐
After I became pregnant but before the birth of our son / ☐
After the birth of our son / ☐
Don’t know / ☐
Decline to answer / ☐
GO TO F7
F7. / How did the father react when he became aware that you were a carrier of haemophilia?SELECT ONE ANSWER ONLY.
It did not bother him at all / ☐
He was a little disappointed / ☐
He was very disappointed / ☐
He was devastated / ☐
Don’t know / ☐
Decline to answer / ☐
GO TO F8
F8. / Which of the following statements best describes your reactions and feelings when your son was confirmed as having haemophilia?SELECT ONE ANSWER ONLY
It did not bother me at all / ☐
I was a little disappointed / ☐
I was very disappointed / ☐
I was devastated / ☐
Don’t know / ☐
Decline to answer / ☐
IF YOU ARE IN A RELATIONSHIP, MARRIED OR DIVORCED OR A WIDOW ANSWER F9.
OTHERWISE READ THE INSTRUCTION BEFORE F13.
SELECT ONE ANSWER ONLY
It did not bother him at all / ☐
He was a little disappointed / ☐
He was very disappointed / ☐
He was devastated / ☐
Don’t know / ☐
Decline to answer / ☐
IF YOU ARE FEMALE SKIP TO F13.
IF YOU ARE MALE ANSWER F10a TO F12.
F10a. / Is the mother of your son a carrier of haemophilia?SELECT ONE ANSWER ONLY
Yes / ☐ / GO TO F10b
No / ☐ / GO TO F12
Don’t know / ☐ / GO TO F12
Declined to answer / ☐ / GO TO F12
F10b. / When did you become aware that the mother of your son was a carrier of haemophilia?
SELECT ONE ANSWER ONLY
Before we were married / ☐
After we were married but before she became pregnant / ☐
After she became pregnant but before the birth of our son / ☐
After the birth of our son / ☐
Don’t know / ☐
Decline to answer / ☐
GO TO F11
F11. / How did you react when you became aware that his mother was a carrier of haemophilia?SELECT ONE ANSWER ONLY
It did not bother me at all / ☐
With a little disappointment / ☐
With a great deal of disappointment / ☐
With a great deal of disappointment / anger / frustration / ☐
Don’t know / ☐
Decline to answer / ☐
GO TO F12
F12. / Which of the following statements best describes your reactions and feelings when your son was confirmed as having haemophilia?PLEASE SELECT ONE ANSWER
It did not bother me at all / ☐
I was a little disappointed / ☐
I was very disappointed / ☐
I was devastated / ☐
Don’t know / ☐
Decline to answer / ☐
IF YOU ARE FEMALE AND CONSIDER YOURSELF TO BE A CARRIER (‘YES’ AT F4b) ANSWER F13.
IF YOU ARE FEMALE AND DO NOT CONSIDER YOURSELF TO BE A CARRIER (‘NO’ OR ‘DON’T KNOW) AT F4b) GO TO F16.
IF YOU ARE MALE: ANSWER F13 IF YOU HAVE ANSWERED CODE 1 (Before we were married) OR CODE 2 (After we were married but before she became pregnant) AT F10b.
OTHERWISE GO TO F16.
F13. / Did you receive genetic counselling from your haemophilia treatment centre/clinic before your (oldest) son with haemophilia was born?SELECT ONE ANSWER ONLY
Yes / ☐ / GO TO F14
No / ☐ / GO TO F15
Don’t know / can’t remember / ☐ / GO TO F15
F14. / How helpful was this counselling? Please answer using a five point scale where 1 is ‘not at all helpful’ and 5 is ‘very helpful’
SELECT ONE ANSWER ONLY
Not at all helpful
1 / 2 / 3 / 4 / Very
helpful
5 / Don’t know/
Can’t remember
6
☐ / ☐ / ☐ / ☐ / ☐ / ☐
GO TO F16
F15. / Would you have liked to have received genetic counselling?SELECT ONE ANSWER ONLY
Yes / ☐ / GO TO F16
No / ☐ / GO TO F16
Don’t know / ☐ / GO TO F16
F16. / Do you want to have additional children in the future?
SELECT ONE ANSWER ONLY
Yes / ☐
No / ☐
Don’t know / ☐
IF YOU HAVE A DAUGHTER(S) WHO IS/ARE NOT YET CONFIRMED TO BE OR NOT TO BE CARRIERS AT F3 ANSWER F17a AND F18.
OTHERWISE GO TO F19a.
F17a. / You mentioned earlier that you had a daughter who is not yet confirmed to be or not to be a carrier of haemophilia. Do you feel that it would be appropriate for her to be tested to confirm if she is a carrier or not?SELECT ONE ANSWER ONLY
Yes / ☐ / GO TO F17b
No / ☐ / GO TO F17b
Don’t know / ☐ / GO TO F17b
F17b. / Has testing for carrier status of your daughter who is not yet confirmed to be or not to be a carrier of haemophilia been offered?
SELECT ONE ANSWER ONLY
Yes / ☐
No / ☐
Don’t know / ☐
IF YES AT F17a ANSWER F18.
OTHERWISE IF YOU ARE FEMALE ANSWER F19a.
IF YOU ARE MALE ANSWER F19b.
F18. / At what age do you think it would be appropriate for her to be tested to confirm if she is acarrier or not?
Years / If you have more than one daughter not yet confirmed to be or not to be a carrier please answer for the eldest
Don’t know / ☐
Decline to answer / ☐
IF YOU ARE FEMALE ANSWER F19a.
IF YOU ARE MALE ANSWER F19b.
F19a. / Which of the following members of your extended family are known to have haemophilia or are known to be carriers of haemophilia?
SELECT ALL THAT APPLY
F19b. / Which of the following members of your wife / your son’s mother’s extended family are known to have haemophilia or are known to be carriers of haemophilia?
SELECT ALL THAT APPLY
Males known to have haemophilia / Females known to be carriers
Brother / ☐ / Sister / ☐
Grandfather / ☐ / Mother / ☐
Uncle / ☐ / Grandmother / ☐
Great Uncle / ☐ / Aunt / ☐
Male Cousin / ☐ / Great Aunt / ☐
Nephew / ☐ / Female Cousin / ☐
None of these male members of extended family / ☐ / Niece / ☐
Don’t know / ☐ / None of these female members of extended family / ☐
Don’t know / ☐
IF YOU HAVE A SON OR A DAUGHTER WHO DOES NOT HAVE HAEMOPHILIA AT F3 ANSWER F20 AND F21.