PWH Questionnaire - Haemophilia Experiences, … · Web viewThe questions asked will assess your...
Transcript of PWH Questionnaire - Haemophilia Experiences, … · Web viewThe questions asked will assess your...
Respondent ID
Haemophilia Experiences, Results and Opportunities (HERO)
Questionnaire for Adult People with Haemophilia (PWH)
Page 1 of 47
Respondent ID
Page 2 of 47
Contents:
Introduction....................................................................................................................................4
Section 1: Screening questions..............................................................................................5
Section 2: Education, employment and job issues.............................................................8
Section 3: Family and personal life......................................................................................12
Section 4: Personal well-being..............................................................................................22
Section 5: Your haemophilia and its treatment.................................................................30
Section 6: Sources of information about haemophilia.....................................................37
Section 7: The future..............................................................................................................39
Section 8: Important issues...................................................................................................40
Section 9: Analysis questions...............................................................................................42
Page 3 of 47
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 Adult people living with haemophilia (PWH).This questionnaire is only appropriate if you have been diagnosed with haemophilia. If you are a parent (or legal guardian) of a boy aged under 18 years who has haemophilia 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.
I confirm that I have read, understood and accept the points above and am happy to complete the questionnaire on this basis.
Agree and proceed ☐
Page 4 of 47
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 ONLYAn individual with haemophilia ☐ GO TO S2
The parent (or legal guardian) of a boy aged under 18 years who has haemophilia ☐
In this case you should complete a different version of the questionnaire specially designed for parents of children with haemophilia. Please use the parent (PT) questionnaire..
Neither of these ☐In this case the questionnaire is not appropriate for you. Please destroy the questionnaire.
S2. Please record your age:Age in number of years CLOSE IF RESPONDENT BELOW 18
YEARS OLD
GO TO S3
S3. Please record your genderMale ☐ GO TO S4
Female ☐In this case the questionnaire is not appropriate for you. Please destroy the questionnaire.
S4. Please confirm the bleeding disorder that you have:SELECT ONE ANSWER ONLY
Haemophilia A (without inhibitors) ☐ GO TO S5Haemophilia B (without inhibitors) ☐ GO TO S7
Haemophilia (A or B) with inhibitors ☐ GO TO S9
Other Bleeding disorder ☐In this case the questionnaire is not appropriate for you. Please destroy the questionnaire.
S5. Is your haemophilia A treated with…?SELECT ONE ANSWER IN EACH ROW
Yes Noa) Replacement FVIII (Factor VIII) ☐ ☐
b) Cryoprecipitate ☐ ☐c) Fresh Frozen Plasma (FFP) ☐ ☐
d) DDAVP (desmopressin) ☐ ☐e) Other (PLEASE SPECIFY) ☐ ☐
______________________________________________________________________________________________
GO TO S6
Page 5 of 47
S6. Have you 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 (you are 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 your haemophilia B treated with …?SELECT ONE ANSWER IN EACH ROW
Yes Noa) Replacement FIX (Factor IX) ☐ ☐
b) Fresh Frozen Plasma (FFP) ☐ ☐c) Other (PLEASE SPECIFY) ☐ ☐
__________________________________________________________________________________________________________________________
___________________
GO TO S8
S8. Have you 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 (you are 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 this treated with a factor concentrate primarily intended for patients with inhibitors? SELECT ONE ANSWER ONLY
Yes ☐No ☐
Don’t know ☐GO TO S10
Page 6 of 47
S10. Have you experienced a bleed 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 S9 (you are 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. What other medical conditions do you have? Please indicate those that you have as a result of your haemophilia in the first column and those that are not related to your haemophilia in the second column.PLEASE SELECT ALL THAT APPLY
As a result of having haemophilia
Not related to having haemophilia
Angina pectoris (heart not receiving enough blood) ☐ ☐Anxiety ☐ ☐
Anaemia ☐ ☐Arthritis ☐ ☐Asthma ☐ ☐
Chronic pain ☐ ☐Depression ☐ ☐
Diabetes ☐ ☐Hayfever ☐ ☐
HCV (Hepatitis C Virus) ☐ ☐Headache ☐ ☐
Heart problems ☐ ☐High cholesterol ☐ ☐
High blood pressure / Hypertension ☐ ☐HIV/Aids ☐ ☐
Low blood pressure / Hypotension ☐ ☐Insomnia ☐ ☐
Irritable bowel syndrome ☐ ☐Migraine ☐ ☐Obesity ☐ ☐
Osteoporosis ☐ ☐Psoriasis ☐ ☐
Stress ☐ ☐Chronic cold, sniffles ☐ ☐
Chronic sinusitis ☐ ☐Other (PLEASE SPECIFY) ☐ ☐
__________________________________None ☐ ☐
Decline to answer ☐ ☐
When answering the remaining questions about your haemophilia, please consider all the aspects of haemophilia, including the other conditions that have resulted from having haemophilia that you have selected in the first column above.
Section 2: Education, employment and job issues
Page 7 of 47
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 W3aEmployed part time (up to 30 hours per week) ☐ GO TO W3a
Self-employed ☐ GO TO W3aNot employed but looking for work ☐ GO TO W3b
Not employed and not looking for work ☐ GO TO W3bRetired ☐ GO TO W3b
Short-term disability ☐ GO TO W3bLong term disability ☐ GO TO W3b
Homemaker (housewife / househusband) – no other work ☐ GO TO W3bOther (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
Page 8 of 47
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 my haemophilia ☐I have had to voluntarily leave a job in the past because of my haemophilia ☐
I believe I have been overlooked for promotion in the past because of my haemophilia ☐I believe that I have not been hired for a job because of my haemophilia ☐
I believe that having haemophilia has helped me get a job ☐I selected my job/training to take into account the needs relating to my haemophilia ☐
Having haemophilia has had no impact on my choice of job ☐Current treatment allows me to work in most situations ☐
I have to restrict the number of hours I work due to my haemophilia ☐I have to work flexible hours due to my haemophilia ☐
None of the above ☐
GO TO W5
W5. To what extent has haemophilia (or any other conditions resulting from you having 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 W6
W6. Have you ever been given advice on employment or seeking employment by your haemophilia doctor or his/her team?SELECT ONE ANSWER ONLY
Yes ☐ GO TO W7No ☐ GO TO W9
Don’t know / can’t remember ☐ GO TO W9
W7. What was this advice?
Page 9 of 47
PLEASE SELECT ALL THAT APPLYAdvice on suitable jobs ☐
What to say to an employer/prospective employer about haemophilia ☐What to do if a bleed occurs at work ☐
When to tell my employer about my haemophilia ☐Which colleagues I should tell about my haemophilia ☐Precautions I need to take at work to prevent bleeds ☐
Other (PLEASE SPECIFY) ☐___________________________________________________________-
_____________________________________________________Don’t know / Can’t remember ☐
GO TO W8
W8. How helpful was this advice? 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 A1
W9. How helpful would you find it to discuss employment issues with your haemophilia doctor or his/her team? 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’tKnow
6☐ ☐ ☐ ☐ ☐ ☐
GO TO A1
Page 10 of 47
Activities
A1. Which of the following physical activities do you currently take part in?PLEASE SELECT ALL THAT APPLY
A2. Which of the listed activities did you take part in previously, but are 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 you like to do, but are unable to because of your haemophilia (or any other conditions resulting from you having haemophilia)?SELECT ALL THAT APPLY
A1Currently
A2Previously
A3Would 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
Page 11 of 47
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 ONLYMarried / in a long term relationship ☐
Divorced/separated ☐Single ☐
Widower ☐Decline to answer ☐
GO TO F1b
F1b. Do you currently live…?SELECT ALL THAT APPLY
With your wife (with or without your own children) ☐Alone (with or without your own children) ☐
With other family members (e.g. including your own parents/your wife’s parents) ☐
With others ☐Decline to answer ☐
GO TO F1c
F1c. Do you think that haemophilia (or any other conditions resulting from you having haemophilia) has impacted your possibilities to develop close relationships with a partner during the last year?SELECT ONE ANSWER ONLY
Yes ☐ GO TO F1dNo ☐ GO TO F2
Decline to answer ☐ GO TO F2
F1d. Why do you say that?SELECT ALL THAT APPLY
I felt different because of my haemophilia ☐I was fearful of their reaction if I told them about my haemophilia ☐
I felt unable to do the same things as a partner could do ☐It is not easy for someone to understand my issues with haemophilia ☐
I am worried about the impact of my haemophilia in future years ☐I am worried about being able to support a family in the future ☐
I feel less attractive because of my haemophilia ☐Due to lethargy/fatigue ☐
Other (PLEASE SPECIFY) ☐________________________________________________________________________
________________________________________
Don’t know / decline to answer ☐
GO TO F2
F2. Do you have one or more…?Page 12 of 47
Who has (have)
haemophilia
Who does (do) NOT
have haemophilia
Who is (are) not
confirmed to have / not have
haemophiliaOlder brother(s) [MULTIPLE ANSWERS
ALLOWED] ☐ ☐ ☐Younger brother(s) [MULTIPLE ANSWERS
ALLOWED] ☐ ☐ ☐I have no brothers [EXCLUSIVE] ☐Decline to answer [EXCLUSIVE] ☐
F3. Do you have one or more…?
Who have been
diagnosed as carriers of
haemophilia
Who have been
confirmed NOT to be carriers
Who are not yet
confirmed to be or not
to be carriers
Sisters(s) [MULTIPLE ANSWERS ALLOWED] ☐ ☐ ☐I have no sisters [EXCLUSIVE] ☐
Decline to answer [EXCLUSIVE] ☐
F4. Which of the following members of your extended family, now or in previous generations, are known to have haemophilia or are known to be carriers of haemophilia?PLEASE SELECT ALL THAT APPLY
Males known to have haemophilia Females known to be carriers
Grandfather ☐ Grandmother ☐Uncle ☐ Aunt ☐
Great Uncle ☐ Great Aunt ☐Male Cousin ☐ Female Cousin ☐
Nephew ☐ Niece ☐None of these male
members of extended family ☐
None of these female members of extended
family ☐Don’t know / Decline ☐ Don’t know / Decline ☐
GO TO C1
Children
C1. Do you have your own biological children (i.e. not fostered or adopted)?SELECT ONE ANSWER ONLY
Yes ☐ GO TO C2Page 13 of 47
No ☐ GO TO C3Decline to answer ☐ GO TO C3
C2. How many daughters and how many sons?Daughters GO TO C4
Number of daughters
Sons GO TO C4Number of
sons
C3. Do you want to have children in the future?SELECT ONE ANSWER ONLY
Yes ☐No ☐
Don’t know ☐
GO TO C4
C4. Have you received genetic counseling from your haemophilia treatment centre/clinic? SELECT ONE ANSWER ONLY
Yes ☐ GO TO C5No ☐ GO TO C6
Don’t know / can’t remember ☐ GO TO C6
C5. 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 C7
Page 14 of 47
C6. How helpful would you find it to be given genetic counselling in the future? 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
6☐ ☐ ☐ ☐ ☐ ☐
GO TO C7
C7. As far as you are aware, have any of the other members of your family received genetic counselling?
Yes ☐No ☐
Don’t know ☐
GO TO C8
C8. Have you ever discussed your family with your haemophilia doctor or his/her team, such as being asked about the family history of inheritance, other family members affected by haemophilia etc.?SELECT ONE ANSWER ONLY
Yes ☐ GO TO C9No ☐ GO TO C10
Don’t know / can’t remember ☐ GO TO C10
C9. How helpful was it to discuss your family? 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 U1
C10. How helpful would you find it to have the opportunity to discuss your family with your doctor or his/her team, such as being asked about the family history of inheritance, other family members affected by haemophilia etc.? 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
6☐ ☐ ☐ ☐ ☐ ☐
IF YOU ARE MARRIED/IN A LONG TERM RELATIONSHIP AT F1a GO TO U1. IF YOU ARE NOT MARRIED/IN A LONG TERM RELATIONSHIP GO TO U4
Page 15 of 47
U1. How satisfied are you with the support you get from your fiancée / wife / girlfriend or husband / boyfriend regarding your haemophilia? Would you say that you are…?SELECT ONE ANSWER ONLY
Very satisfied ☐ GO TO U2GO TO U2Quite satisfied ☐
Quite dissatisfied ☐ GO TO U3GO TO U3Very dissatisfied ☐
Don’t know / Decline to answer ☐ GO TO U4
U2. Which of the following reasons make you satisfied with the support you get from your fiancée / wife / girlfriend or boyfriend / husband? SELECT ALL THAT APPLY
We communicate well ☐Our love for each other is very strong ☐
My fiancée / wife / girlfriend or boyfriend / husband takes the lead in providing financial security ☐
My fiancée / wife / girlfriend or boyfriend / husband takes the lead in household/family tasks ☐
My haemophilia does not influence our relationship ☐My fiancée / wife / girlfriend or boyfriend / husband provides moral support and
encouragement ☐My fiancée / wife / girlfriend or boyfriend / husband provides emotional support ☐
My fiancée / wife / girlfriend or boyfriend / husband really cares about me ☐My fiancée / wife / girlfriend or boyfriend / husband takes an interest in making
sure I have the right treatment ☐My fiancée / wife / girlfriend or boyfriend / husband let’s me care for myself
unless absolutely necessary ☐My fiancée / wife / girlfriend or boyfriend / husband gets involved in giving my
treatment ☐My fiancée / wife / girlfriend or boyfriend / husband devotes time to me ☐
My fiancée / wife / girlfriend or boyfriend / husband accepts me for who I am ☐My fiancée / wife / girlfriend or boyfriend / husband treats me as an equal ☐
My fiancée / wife / girlfriend or boyfriend / husband trusts me ☐Other (SPECIFY) ☐
____________________________________________________________________________________________________________________________
Don’t know / decline to answer ☐
GO TO U4
U3. Which of the following reasons make you dissatisfied with the support you get from your fiancée / wife / girlfriend or boyfriend / husband?SELECT ALL THAT APPLY
We do not communicate well ☐Our love for each other is not very strong ☐
I have to take the lead in providing financial security ☐I have to take the lead in household/family tasks ☐
My haemophilia negatively influences our relationship ☐My fiancée / wife / girlfriend or boyfriend / husband does not provide moral support
and encouragement ☐My fiancée / wife / girlfriend or boyfriend / husband does not provide emotional
support ☐My fiancée / wife / girlfriend or boyfriend / husband does not care enough ☐
Page 16 of 47
My fiancée / wife / girlfriend or boyfriend / husband does not take an interest in making sure I have the right treatment ☐
My fiancée / wife / girlfriend or boyfriend / husband worries/interferes too much ☐My fiancée / wife / girlfriend or boyfriend / husband does not get involved in giving
my treatment ☐My fiancée / wife / girlfriend or boyfriend / husband does not have enough time to
devote to me ☐My fiancée / wife / girlfriend or boyfriend / husband does not accept me for who I am ☐
My fiancée / wife / girlfriend or boyfriend / husband does not treat me as an equal ☐My fiancée / wife / girlfriend or boyfriend / husband does not trust me ☐
Other (SPECIFY) ☐______________________________________________________________
Don’t know / decline to answer ☐
GO TO U4
U4. How satisfied are you with the support you get from your family? Would you say that you are…?SELECT ONE ANSWER ONLY
Very satisfied ☐Quite satisfied ☐
Quite dissatisfied ☐Very dissatisfied ☐
Don’t know / Decline to answer ☐
GO TO U5
Page 17 of 47
The following set of questions is about your work colleagues, friends, and other people who know you.
U5. As well as your immediate family, who else knows about your haemophilia?SELECT ONE ANSWER IN EACH ROW
None of them
Only one or
twoA select
fewMost of them
All of them
Not applicabl
ea) Friends ☐ ☐ ☐ ☐ ☐
b) Colleagues at work/school/university ☐ ☐ ☐ ☐ ☐ ☐
c) Neighbours living close by ☐ ☐ ☐ ☐ ☐
d) Other people that you are in contact with
regularly ☐ ☐ ☐ ☐ ☐e) Friends on
Facebook/social media contacts
☐ ☐ ☐ ☐ ☐ ☐
ANSWER U6a AND U6b IF AT LEAST ‘ONE OR TWO’ OF YOUR FRIENDS KNOW ABOUT YOUR HAEMOPHILIA.OTHERWISE READ THE INSTRUCTION BEFORE U6c
U6a. How satisfied are you with the support you get from your friends? Would you say that you are…?SELECT ONE ANSWER ONLY
Very satisfied ☐Quite satisfied ☐
Quite dissatisfied ☐Very dissatisfied ☐
Don’t know / Decline to answer ☐
U6b. Have you ever had a negative reaction or negative experience as a result of telling a friend that you have haemophilia?SELECT ONE ANSWER ONLY
Yes ☐No ☐
Don’t know / Decline to answer ☐
ANSWER U6c IF AT LEAST ‘ONE OR TWO’ OF YOUR COLLEAGUES AT WORK/SCHOOL/UNIVERSITY KNOW ABOUT YOUR HAEMOPHILIA. OTHERWISE GO TO THE NEXT INSTRUCTION
Page 18 of 47
U6c. How satisfied are you with the support you get from your colleagues at work / school / university? Would you say that you are…?SELECT ONE ANSWER ONLY
Very satisfied ☐Quite satisfied ☐
Quite dissatisfied ☐Very dissatisfied ☐
Don’t know / Decline to answer ☐
IF YOU ARE MARRIED/IN A LONG TERM/ PRIVATE/ INTIMATE RELATIONSHIP PLEASE READ BELOW. IF YOU ARE NOT MARRIED/IN A LONG TERM RELATIONSHIP GO TO E1
Private and intimate relationships
The following series of questions cover your private and intimate relationships.
This is an area of living with haemophilia and its consequences that has received little attention in past research and the purpose of these questions is to assess how haemophilia impacts this aspect of your life.
We very much hope that you will be prepared to answer this section and please do remember that all information is confidential.
If you are happy to answer these questions please answer X1 and subsequent sections. Even if you continue you would be able to decline to answer any individual question.
If you would prefer not to answer this set of questions please skip the section and continue with the section on ‘Personal wellbeing’ at E1.
Continue with questions on private and intimate relationships ☐ GO TO X1
Skip questions on private and intimate relationships and continue to next section ☐ GO TO ‘PERSONAL WELL BEING’
Page 19 of 47
X1. The following questions ask about your relationship with your wife / fiancée / girlfriend or your husband / fiancée / boyfriend over the last month:
SELECT ONE ANSWER ONLY
Extremely
satisfiedModerately satisfied
Neither satisfied
nor dissatisfie
d
Moderately dissatisfie
d
Extremely dissatisfie
d
Decline to
answerAside from your
private and intimate relationship, how satisfied are you
with all other aspects of the
relationship you have with your wife / fiancée /
girlfriend or your husband / fiancée /
boyfriend?
☐ ☐ ☐ ☐ ☐ ☐
GO TO X2a
X2a. How long have you been married/in a relationship with your wife / fiancée / girlfriend or your husband / fiancée / boyfriend?PLEASE ANSWER IN TERMS OF MONTHS OR YEARS AS APPROPRIATE
MonthsOR
YearsGO TO X5
X5. Have you ever discussed your intimate problems with your haemophilia doctor or his/her team?SELECT ONE ANSWER ONLY
Yes ☐ GO TO X6No ☐ GO TO X7
Don’t know / can’t remember ☐ GO TO X7
X6. How helpful was it to discuss your intimate problems with your haemophilia doctor or his/her team? 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 E1
Page 20 of 47
X7. How helpful would you find it to discuss your intimate problems with your haemophilia doctor or his/her team? 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
6☐ ☐ ☐ ☐ ☐ ☐
GO TO E1
Page 21 of 47
Section 4: Personal well-being
E1. For each of the following statements, please indicate how often you have felt like this during the last two weeks. Has it been ‘all the time’, ‘most of the time’, ‘some of the time’ or ‘at no time’.SELECT ONE ANSWER IN EACH STATEMENT
All of the time
Most of the time
Some of the time
At no time
Don’t know/
DeclineI have felt cheerful and in good
spirits ☐ ☐ ☐ ☐ ☐I have felt calm and relaxed ☐ ☐ ☐ ☐ ☐
I have felt active and vigorous ☐ ☐ ☐ ☐ ☐I woke up feeling fresh and rested ☐ ☐ ☐ ☐ ☐
My daily life has been filled with things that interest me ☐ ☐ ☐ ☐ ☐
I have had high self-esteem ☐ ☐ ☐ ☐ ☐
For the following aspects of well-being, please indicate which best describes you:PLACE A TICK IN ON BOX PER GROUP BELOW
E2. MobilityPLEASE SELECT ONE BOX
I have no problems walking ☐I have slight problems walking ☐
I have moderate problems walking ☐I have severe problems walking ☐
I am unable to walk ☐
E3. Self-carePLEASE SELECT ONE BOX
I have no problems washing or dressing myself ☐I have slight problems washing or dressing myself ☐
I have moderate problems washing or dressing myself ☐I have severe problems washing or dressing myself ☐
I am unable to wash or dress myself ☐
Page 22 of 47
E4. Usual activities (e.g. work, study, housework, family or leisure activities)PLEASE SELECT ONE BOX
I have no problems doing my usual activities☐
I have slight problems doing my usual activities☐
I have moderate problems doing my usual activities☐
I have severe problems doing my usual activities☐
I am unable to do my usual activities☐
E5. Pain / discomfortPLEASE SELECT ONE BOX
I have no pain or discomfort☐
I have slight pain or discomfort☐
I have moderate pain or discomfort☐
I have severe pain or discomfort☐
I have extreme pain or discomfort☐
E6. Anxiety / depressionPLEASE SELECT ONE BOX
I am not anxious or depressed☐
I am slightly anxious or depressed☐
I am moderately anxious or depressed☐
I am severely anxious or depressed☐
I am extremely anxious or depressed☐
Page 23 of 47
E7. We would like to know how good or bad your health is TODAY
This scale is numbers from 0 to 100 100 means the best health you can
imagine 0 means the worst health you can
imagine
MARK ‘X’ ON THE SCALE TO INDICATE HOW YOUR HEALTH IS TODAY
NOW PLEASE WRITE THE NUMBER YOU MARKED ON THE SCALE IN THE BOX BELOW
YOUR HEALTH TODAY =
Best Imaginable health state
_____ 100____________
_____ 90____________
_____ 80____________
_____ 70____________
_____ 60____________
_____ 50____________
_____ 40____________
_____ 30____________
_____ 20____________
_____ 10____________
_____ 0
Worst Imaginable Health State
GO TO E8
Page 24 of 47
E8. In the past four weeks, how much would you say that pain has interfered with your daily life?SELECT ONE ANSWER ONLY
Not at all ☐ GO TO Q1A little bit ☐ GO TO Q1
Moderately ☐ GO TO Q1Quite a lot ☐ GO TO E9Extremely ☐ GO TO E9
Don’t know ☐ GO TO E9
E9. Does your pain occur…?SELECT ONE ANSWER ONLY
Only when a bleed occurs ☐All the time ☐
All the time and is worse when I have a bleed ☐Don’t know ☐
GO TO E10
E10. Please list all the things that you do to alleviate the pain or to take your mind off the pain (please include both drug therapy, non-drug therapy and other strategies that you use to cope with the pain)?WRITE IN
Page 25 of 47
The following set of questions deal with how you feel about your haemophilia and how it specifically impacts your day to day life. Each of the statements below represents things that other people have said about how they are affected by their haemophilia.
Q1. Please indicate by placing a tick in the appropriate box the extent to which you agree with each of the following statements from your own perspective.
Select one answer for each statement Disagree strongly
Disagree slightly
Agree slightly
Agree strongly
Don’t know/not applicable
1. My spirituality/religion helps me cope with my haemophilia ☐ ☐ ☐ ☐ ☐
2. Without haemophilia I would be able to enjoy activities that I cannot enjoy now ☐ ☐ ☐ ☐ ☐
3. My whole life revolves around my haemophilia ☐ ☐ ☐ ☐ ☐
4. I hide the fact I have haemophilia from others ☐ ☐ ☐ ☐ ☐
5. I talk to others about my haemophilia ☐ ☐ ☐ ☐ ☐6. My haemophilia is nobody else’s business ☐ ☐ ☐ ☐ ☐7. My haemophilia interferes with my work
life and productivity ☐ ☐ ☐ ☐ ☐8. My haemophilia restricts my social life ☐ ☐ ☐ ☐ ☐9. My social activities do not suffer because
of my haemophilia ☐ ☐ ☐ ☐ ☐10. I worry about not being able to carry out
my family responsibilities in the future ☐ ☐ ☐ ☐ ☐11. I am concerned about the impact that my
haemophilia has on other members of my family
☐ ☐ ☐ ☐ ☐
12. My haemophilia restricts the activities of other members of my family ☐ ☐ ☐ ☐ ☐
13. My haemophilia causes me to worry about my financial future ☐ ☐ ☐ ☐ ☐
14. I wish people I meet understood more about haemophilia ☐ ☐ ☐ ☐ ☐
15. My haemophilia has had a positive effect on some aspects of my life ☐ ☐ ☐ ☐ ☐
16. I feel very anxious about having a bleed ☐ ☐ ☐ ☐ ☐17. Overall, I feel I cope well with my
haemophilia ☐ ☐ ☐ ☐ ☐18. My haemophilia makes me feel depressed ☐ ☐ ☐ ☐ ☐19. I feel I need more pain killers than my
doctor prescribes to me. ☐ ☐ ☐ ☐ ☐20. I feel I have other life-issues that are more
important to deal with than having haemophilia ☐ ☐ ☐ ☐ ☐
21. I feel that I am fully involved in the treatment decisions. ☐ ☐ ☐ ☐ ☐
22. I very much dislike having to visit the haemophilia treatment centre/clinic ☐ ☐ ☐ ☐ ☐
Page 26 of 47
23. The support and advice I get from other people with haemophilia that I know has been a great help
☐ ☐ ☐ ☐ ☐
24. I sometimes use the fact that I have haemophilia to my advantage ☐ ☐ ☐ ☐ ☐
25. I use non-drug methods to cope with my pain ☐ ☐ ☐ ☐ ☐
26. My family and friends put too much pressure on me about my haemophilia ☐ ☐ ☐ ☐ ☐
27. My haemophilia is better managed as a result of going to a treatment centre ☐ ☐ ☐ ☐ ☐
28. Haemophilia does not interfere with my lifestyle ☐ ☐ ☐ ☐ ☐
30. My haemophilia makes me feel ‘less normal’ ☐ ☐ ☐ ☐ ☐
31. Having haemophilia has made me more caring towards others ☐ ☐ ☐ ☐ ☐
Now we want you to think back to when you were a child. Each of the statements below again represents things we have been told about haemophilia.
Q2. Again, please indicate by placing a tick in the appropriate box the extent to which you agree with each of the following statements from your own perspective.
Select one answer for each statement Disagree strongly
Disagree slightly
Agree slightly
Agree strongly
Don’t know/not applicable
1. My mother sometimes felt guilty that she had passed haemophilia to me ☐ ☐ ☐ ☐ ☐
2. My father sometimes felt disappointed that his son had haemophilia ☐ ☐ ☐ ☐ ☐
3. My haemophilia made me feel isolated at school ☐ ☐ ☐ ☐ ☐
4. Haemophilia held me back in my education ☐ ☐ ☐ ☐ ☐
5. My haemophilia prevented me from playing with my friends as often as I wanted
☐ ☐ ☐ ☐ ☐
6. My haemophilia made little difference to me when I was younger ☐ ☐ ☐ ☐ ☐
7. I was aware of tensions in the family because of my haemophilia ☐ ☐ ☐ ☐ ☐
8. I did not always tell my parents I had a bleed to avoid making a fuss ☐ ☐ ☐ ☐ ☐
9. My mother could not easily cope with my haemophilia ☐ ☐ ☐ ☐ ☐
10. My father could not cope with my haemophilia ☐ ☐ ☐ ☐ ☐
11. We did more things together as a family because of my haemophilia ☐ ☐ ☐ ☐ ☐
12. Having haemophilia did not prevent us from having the types of family holidays that we wanted
☐ ☐ ☐ ☐ ☐
13. My parents overprotected me because of ☐ ☐ ☐ ☐ ☐
Page 27 of 47
my haemophilia14. My brothers or sisters resented all the
attention that I got because of my haemophilia ☐ ☐ ☐ ☐ ☐
15. I was rarely bothered by my haemophilia as a child ☐ ☐ ☐ ☐ ☐
16. My haemophilia did not influence my relationship with my parents ☐ ☐ ☐ ☐ ☐
17. My haemophilia did not influence my relationship with my school friends ☐ ☐ ☐ ☐ ☐
18. My teachers at school did not understand haemophilia ☐ ☐ ☐ ☐ ☐
19. When younger I did not always comply with my treatment ☐ ☐ ☐ ☐ ☐
20. When younger I sometimes exaggerated the severity of a bleed to get attention ☐ ☐ ☐ ☐ ☐
21. I had disagreements with my parents over a sport that I wanted to take part in and which they felt too dangerous ☐ ☐ ☐ ☐ ☐
22. When younger my haemophilia sometimes prevented me from going on school trips or other similar trips ☐ ☐ ☐ ☐ ☐
23. I missed a significant amount of time from school because of my haemophilia ☐ ☐ ☐ ☐ ☐
Q3. In the past 5 years, have you received any treatment for a psychological condition such as depression, anxiety etc.?SELECT ONE ANSWER ONLY
Yes ☐ GO TO Q4No ☐ GO TO Q5
Don’t know / decline to answer ☐ GO TO Q5
Q4. Was it directly related to your haemophilia?SELECT ONE ANSWER ONLY
Yes ☐ GO TO Q5No ☐ GO TO T1
Don’t know / decline to answer ☐ GO TO T1
Q5. Have you experienced one or more of the following stressful life-events in the past 6 months?PLEASE SELECT ALL THAT APPLY
Loss of a loved one ☐Loss of job and/or income ☐Divorce or family conflicts ☐
Financial problems ☐Severe illness (of yourself or loved one) ☐
Other shocking event (e.g. a robbery) ☐None of these ☐
GO TO T1
Page 28 of 47
Section 5: Your haemophilia and its treatment
The following questions are about your haemophilia and its treatment:
T1. At what age were you diagnosed with haemophilia?If diagnosed before the age of 1 year enter ‘0’
Age at which diagnosed (years)Don’t Know / Can’t remember ☐
GO TO T2
T2. When you were first diagnosed, what was the first treatment you were given? PLEASE SELECT ALL THAT APPLY
Fresh Frozen Plasma (FFP) ☐Cryoprecipitate ☐
Herbal medicine ☐Replacement Factor VIII / Factor IX ☐
Other medication ☐No medication ☐
Don’t know / Can’t remember ☐GO TO T3
T3. Who has the main responsibility for your haemophilia care?SELECT ONE ANSWER ONLY
I have the main responsibility ☐The haemophilia nurse has the main responsibility ☐
The haemophilia specialist has the main responsibility ☐A family member has the main responsibility ☐
Another person has the main responsibility (SPECIFY) ☐________________________________________________________________________
________________________________________
Don’t Know / Decline to answer ☐
IF YOU ARE TREATED WITH REPLACEMENT FACTOR VIII OR FACTOR IX OR A FACTOR CONCENTRATE PLEASE ANSWER T4 TO T9.OTHERWISE GO TO T10.
Page 29 of 47
T4. Which of the following statements best summarises the way you use your replacement factor/factor concentrate?SELECT ONE ANSWER ONLY
On-demand (only when a bleed occurs) ☐Regular prophylaxis (infusion of factor one or more times per week)
(in addition to on-demand treatment when a bleed occurs) ☐Usually on demand (when a bleed occurs), but sometimes as short
term prophylaxis to cover a specific event such as participation in a sport, a special social event, or to cover physiotherapy ☐
Don’t know / Decline to answer ☐GO TO T5
T5. Would you say you use your replacement factor product/factor concentrate…?SELECT ONE ANSWER ONLYA lot more than was instructed by the haemophilia physician or nurse ☐
A little more than was instructed by the haemophilia physician or nurse ☐
Exactly as instructed by the haemophilia physician or nurse ☐A little less than was instructed by the haemophilia physician or
nurse ☐A lot less than was instructed by the haemophilia or nurse ☐
It varies, sometimes more, sometimes less ☐None of the above statements apply to me ☐
GO TO T6
T6. Is your haemophilia treatment infused…?SELECT ONE ANSWER ONLY
Always at home ☐Mostly at home but sometimes at the haemophilia clinic / hospital ☐Mostly at the haemophilia clinic / hospital but sometimes at home ☐
Typically a first dose at home and if needed further doses at the haemophilia clinic / hospital ☐
Always at the haemophilia clinic / hospital ☐Decline to answer ☐
GO TO T7
T7. Who normally infuses your haemophilia treatment?SELECT ONE ANSWER ONLY
Yourself ☐Your fiancée / wife / girlfriend or your boyfriend / husband ☐
A nurse or physician at the haemophilia clinic/centre ☐Someone else (SPECIFY) ☐
________________________________________________________________________________________________________________
Decline to answer ☐GO TO T8
Page 30 of 47
T8. Who typically decides when to treat with your haemophilia treatment in response to a bleed?SELECT ONE ANSWER ONLY
You alone ☐You and the physician/nurse at the haemophilia treatment
centre/clinic in a joint decision ☐The physician/nurse at the haemophilia treatment centre/clinic ☐
Someone else (SPECIFY) ☐________________________________________________________________________
________________________________________Decline to answer ☐
IF YOU ANSWERED ‘YOURSELF’ AT T7 GO TO T9OTHERWISE GO TO T10
T9. At what age did you take over the main responsibility for infusing yourself?
Age at which took main responsibility to self-infuse (years)Don’t Know / Can’t remember ☐
GO TO T10
T10. Have you ever had any difficulty in obtaining replacement factor products in the last five years or concerns about their availability or affordability?SELECT ONE ANSWER ONLY
Yes ☐No ☐
Don’t know / decline to answer ☐
ANSWER T11 IF YES AT T10 OTHERWISE GO TO T12a
T11. What have been the difficulties in obtaining replacement factor products/concerns about their availability or affordability?PLEASE SELECT ALL THAT APPLY
Lack of supply at the hospital ☐Lack of supply throughout the country ☐
Unpredictability of supply ☐Physician reluctant to prescribe it ☐
Could not personally afford it ☐Difficulty with health insurance ☐
Other (PLEASE SPECIFY) ☐________________________________________________________________________
________________________________________
Don’t know ☐GO TO T12a
Page 31 of 47
T12a. How many bleeds requiring treatment did you have in the last month?
Number of bleeds in the last month [0-99]Don’t know / Can’t remember ☐
T12b. How many bleeds requiring treatment did you have in the last year?
Number of bleeds in the last year [0-99]Don’t know / Can’t remember ☐
PLEASE CHECK THAT YOUR ANSWER AT T12b IS MORE THAN OR EQUAL TO T12a.
ANSWER T13a IF YOU HAVE HAD ONE OR MORE BLEEDS IN THE LAST MONTH (i.e. IF T12a MORE THAN OR EQUAL TO 1).
T13a. Approximately how many of these bleeds were:
Number of bleeds in the last month
Joint bleedsMuscle bleeds
Other (SPECIFY)________________________________________________________________________
________________________________________Don’t know if joint or muscle bleeds
PLEASE CHECK THAT YOUR ANSWER AT T13a IS MORE THAN OR EQUAL TO T12aANSWER T13b IF YOU HAVE HAD ONE OR MORE BLEEDS IN THE LAST YEAR (i.e. IF T12b IS MORE THAN OR EQUAL TO 1).OTHERWISE GO TO T16.PLEASE CHECK THAT EACH ROW AT T13b MUST BE MORE THAN OR EQUAL TO CORRESPONDING ROW AT T13a.
T13b. Approximately how many of these bleeds were:
Number of bleeds in the last year
Joint bleedsMuscle bleeds
Other (SPECIFY)________________________________________________________________________
________________________________________Don’t know if joint or muscle bleeds
PLEASE CHECK THAT SUM OF T13b MUST BE MORE THAN OR EQUAL TO T12b.
ANSWER T14 IF ANY OF YOUR BLEEDS WERE JOINT BLEEDS (in T13a and/or T13b). OTHERWISE GO TO T16.
T14. Do you have a specific joint that suffers more often from bleeds than any other joint? Page 32 of 47
SELECT ONE ANSWER ONLYYes ☐ GO TO T15No ☐ GO TO T16
Don’t know ☐ GO TO T16
T15. Which joint suffers more often from bleeds than any other joint?PLEASE SELECT ALL THAT APPLY
Ankle ☐Knee ☐
Elbow ☐Hip ☐
Shoulder ☐Other (SPECIFY) ☐
________________________________________________________________________________________________________________
GO TO T16
T16 Thinking of your last bleed, what was it caused by…?SELECT ONE ANSWER ONLY
Trauma (a specific event such as a fall or was hit by something) ☐Repetitive activity/actions ☐
Spontaneous bleed (no particular cause) ☐Other (SPECIFY) ☐
________________________________________________________________________________________________________________
Don’t know ☐
GO TO T17
T17. Overall, on a scale of 1 to 10 where 1 is not at all well controlled and 10 is extremely well controlled, how well controlled do you consider your haemophilia to be currently? (For example control may mean to you that you have few bleeds / no pain or a low level of pain)
Not at all well
controlled
Extremely well
controlled1 2 3 4 5 6 7 8 9 10☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐
GO TO T18
Page 33 of 47
T18. Your doctor or nurse has probably given you recommendations about how to manage your haemophilia, including exercising, taking medication and organising your daily routine. How successful have you been in following each of the following recommendations?SELECT ONE ANSWER IN EACH ROW
Completely successful
Partially successful
Rarely successful
Never successful
No Recommendation
given
Don’t know/
Decline to
answerExercise ☐ ☐ ☐ ☐ ☐ ☐
Taking medication ☐ ☐ ☐ ☐ ☐ ☐Organising daily
routine ☐ ☐ ☐ ☐ ☐ ☐Keeping
appointments at the haemophilia
treatment centre ☐ ☐ ☐ ☐ ☐ ☐
T19. How often have you visited your haemophilia treatment centre/clinic (HTC) for any reason (e.g. for treatment, regular check-ups etc.) in the last twelve months?
Number visits to HTC in last twelve monthsDon’t Know / Can’t remember ☐
GO TO T20
T20. How easy or difficult is it for you to visit the haemophilia treatment centre/clinic?SELECT ONE ANSWER ONLY
Very easy ☐ GO TO T22Quite easy ☐ GO TO T22
Quite difficult ☐ GO TO T21Very difficult ☐ GO TO T21
Don’t know ☐ GO TO T22
T21.Which of the following reasons contribute to making it difficult to visit the haemophilia treatment centre/clinic?PLEASE SELECT ALL THAT APPLY
It is a long way to travel ☐The travel is expensive ☐
It takes a long time to get to the Centre/Clinic ☐Sometimes there is no-one available to take me ☐
The Centre/Clinic has limited opening hours ☐I am unable to take time off to go there ☐
Other reason (PLEASE SPECIFY) ☐____________________________________________________________
Don’t know ☐
GO TO T22
Page 34 of 47
T22. Which of the following healthcare professionals do you see relating to the management of your haemophilia?PLEASE SELECT ALL THAT APPLY
T23. For each of those healthcare professionals that you see, please indicate how often you see each one.SELECT ONE PER ROW
Frequency of seeing (T23)
Seen at
T22Every week
Every Month
Every 2 months
Every 3 months
Every 6 months
Every year
Less than
once per year
Haematologist / haemophilia physician ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐
Haemophilia Nurse ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐Physiotherapist ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐
Counsellor / psychologist / psychotherapist ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐
Social Worker ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐General Practitioner (GP) / Family
doctor (FP) ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐Complementary therapist (e.g.
acupuncture, massage etc.) ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐
GO TO T24
T24. For each of the healthcare professionals that you see and that you selected in T22, how satisfied are you with the advice and support that is offered?SELECT ONE ANSWER PER ROW
Satisfaction with advice and support
Very satisfied
Quite satisfied
Quite dissatisfied
Very dissatisfied
I do not need
support
Don’t know / Decline
Haematologist / haemophilia physician ☐ ☐ ☐ ☐ ☐ ☐
Haemophilia Nurse ☐ ☐ ☐ ☐ ☐ ☐Physiotherapist ☐ ☐ ☐ ☐ ☐ ☐
Counsellor / psychologist /psychotherapist ☐ ☐ ☐ ☐ ☐ ☐
Social Worker ☐ ☐ ☐ ☐ ☐ ☐General Practitioner (GP) / Family
doctor (FP) ☐ ☐ ☐ ☐ ☐ ☐Complementary therapist (e.g.
acupuncture, massage etc.) ☐ ☐ ☐ ☐ ☐ ☐
GO TO I1
Page 35 of 47
Section 6: Sources of information about haemophilia
The following set of questions considers your main sources of information about haemophilia.
I1. Overall, how knowledgeable do you feel you are about haemophilia?SELECT ONE ANSWER ONLY
Very knowledgeable ☐Somewhat knowledgeable ☐
A little knowledgeable ☐Not at all knowledgeable ☐
Don’t know ☐
GO TO I2
I2.Yes No
a) Are you a member of the haemophilia society or organisation in your country? ☐ ☐
b) Do you attend meetings of a haemophilia support group (for example with other people with haemophilia)? ☐ ☐
IF YES TO b) ABOVE:Is this more than once a month? ☐ ☐
ALL TO ANSWERc) Are you a member of an on-line support group (e.g. on
Facebook, twitter)? ☐ ☐GO TO I3
I3. What are your main sources of information about haemophilia?PLEASE SELECT ALL THAT APPLY IN COLUMN I3 BELOW
I4. Which of the sources that you selected in I3 do you use most often?SELECT ONE ANSWER ONLY IN COLUMN I4 BELOW
I5. Which single source do you find most useful?SELECT ONE ANSWER ONLY IN COLUMN I5 BELOW
I3Main
sources of information
I4 Use most
oftenI5
Most usefulHaematologist / haemophilia physician ☐ ☐ ☐
Haemophilia Nurse ☐ ☐ ☐Physiotherapist ☐ ☐ ☐
Counsellor / Psychologist / Psychotherapist ☐ ☐ ☐Social Worker ☐ ☐ ☐
General Practitioner (GP) / Family doctor (FP) ☐ ☐ ☐
Family and friends ☐ ☐ ☐Haemophilia Association / Society ☐ ☐ ☐
Other people with haemophilia ☐ ☐ ☐Meetings and seminars ☐ ☐ ☐
Scientific journals ☐ ☐ ☐
Page 36 of 47
Websites for people with haemophilia ☐ ☐ ☐Pharmaceutical company websites ☐ ☐ ☐
Other health related websites ☐ ☐ ☐Other websites ☐ ☐ ☐
Leaflets and literature provided by haemophilia treatment centre/clinic ☐ ☐ ☐Leaflets and literature provided by
pharmaceutical companies ☐ ☐ ☐I am not interested in information ☐ ☐ ☐
Online chat groups/social networking ☐ ☐ ☐Other (SPECIFY) ☐ ☐ ☐
______________________________________________________________________
GO TO I6
I6. How often do you refer to the most used source of information?SELECT ONE ANSWER ONLY
Most days ☐About once a week ☐
About once a fortnight ☐About once a month ☐
About once every two months ☐About once every three months ☐
Less often than once every three months ☐Don’t know ☐
GO TO I7
I7. What, in particular, would you like to know more about from the sources you refer to?WRITE IN
GO TO Fut1
Section 7: The future
Fut1. When thinking about living with haemophilia in the next five years or so, how optimistic or pessimistic are you? Please answer using the scale below where 1 is very pessimistic and 7
Page 37 of 47
is very optimistic.
Very pessimistic
Very optimistic
Don’t know
1 2 3 4 5 6 7☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐
GO TO Fut2
Fut2. At the times when you are feeling optimistic, what are the main factors that make you feel optimistic?WRITE IN
GO TO Fut3
Fut3. At the times when you are feeling pessimistic, what are the main factors that make you feel pessimistic?WRITE IN
GO TO G1
Page 38 of 47
Section 8: Important issues
We are very nearly at the end of the questionnaire
G1/G2. You have been asked questions on a wide range of topics as shown in the list below; we would now like you to indicate, in the following table, the two topics where you would most like to see improvements in the care offered to people with haemophilia or in the interactions that other people have with you as an individual with haemophilia.
G1. Which topic do you regard as being the most important where improvements need to be made in the care offered to people with haemophilia or in the interactions that other people have with you?
G2. And which topic do you regard as being the second most important?SELECT ONE ANSWER IN EACH COLUMN
G1 Most important topic
G2 2nd Most important topic
1 Education, employment and job issues ☐ ☐2 Physical Activities ☐ ☐3 Family and personal life, children ☐ ☐4 Support from wife / fiancée / girlfriend or
your husband / fiancée / boyfriend, family and friends
☐ ☐
6 Personal wellbeing and quality of life ☐ ☐7 Impact of haemophilia on daily life ☐ ☐8 Treatment and interactions with Healthcare
professionals ☐ ☐9 Sources of information ☐ ☐
10 Belief about the future ☐ ☐
GO TO G3
G3. What improvements specifically relating to living with haemophilia, would you like to see in the topic that you selected as being most important?WRITE IN
GO TO G4
Page 39 of 47
G4. And what improvements specifically relating to living with haemophilia would you like to see in the topic that you selected as second most important?WRITE IN
GO TO D1
Page 40 of 47
Section 9: Analysis questions
The following questions are the last set of questions.
Some of them ask very personal questions, but please remember that all of the information will be treated in the strictest confidence and no answers will be attributable to you as an individual.
We need the information to ensure that we have a sufficiently wide cross-section of the population of people with haemophilia.
D1. Do you live in a…?SELECT ONE ANSWER ONLY
Large City ☐Other urban area ☐
Suburban area ☐Rural area ☐
Decline to answer ☐GO TO D2
D2. Are you registered as disabled/in receipt of benefits due to being disabled?SELECT ONE ANSWER ONLY
Yes ☐No ☐
Don’t know / decline to answer ☐GO TO D3a
INCLUDE IN ALL MARKETS EXCEPT CHINA, BRAZIL AND ARGENTINA:
D3a. Which of the following income categories best describes your total household annual income before taxes?SELECT ONE ANSWER ONLY
INCLUDE FOR: FRANCE, GERMANY, ITALY, SPAINLess than €10,000 ☐
€10,000 to €14,999 ☐€15,000 to €19,999 ☐€20,000 to €29,999 ☐€30,000 to €39,999€40,000 to €59,999
€60,000 to €100,000More than €100,000
Decline to answer
☐☐☐☐☐
Page 41 of 47
INCLUDE FOR: UKLess than £10,000 ☐
£10,000 to £14,999 ☐£15,000 to £19,999 ☐£20,000 to £29,999 ☐£30,000 to £39,999 ☐£40,000 to £59,999 ☐
£60,000 to £100,000 ☐More than £100,000 ☐
Decline to answer ☐
INCLUDE FOR: USA AND CANADALess than $15,000 ☐
$15,000 to $19,999 ☐$20,000 to $29,999 ☐$30,000 to $39,999 ☐$40,000 to $59,999 ☐
$60,000 to $100,000 ☐$100,000 to $150,000 ☐
More than $150,000 ☐Decline to answer ☐
INCLUDE FOR: JAPANLess than ¥1,500,000 ☐
¥1,500,000 to ¥1,999.999 ☐¥2,000,000 to ¥2,999,999 ☐¥3,000,000 to ¥3,999,999 ☐¥4,000,000 to ¥5,999,999 ☐¥6,000,000 to ¥9,999,999 ☐
¥10,000,000 to ¥15,000,000 ☐More than ¥15,000,000 ☐
Decline to answer ☐
INCLUDE FOR: ALGERIALess than 100,000 DZD ☐
100,000 to 199,999 DZD ☐200,000 to 299,999 DZD ☐300,000 to 499,999 DZD ☐500,000 to 750,000 DZD ☐
750,000 to 1,000,000 DZD ☐1,000,000 to 1,500,000 DZD ☐
More than 1,500,000 DZD ☐Decline to answer ☐
Page 42 of 47
INCLUDE IN: CHINA, BRAZIL AND ARGENTINA
D3b. Which of the following income categories best describes your total household monthly income before taxes?SELECT ONE ANSWER ONLY
INCLUDE FOR: CHINALess than RMB 1,499 ☐RMB 1,500 to 2,499 ☐RMB 2,500 to 3,999 ☐RMB 4,000 to 5,999 ☐RMB 6,000 to 7,999 ☐RMB 8,000 to 9,999 ☐
More than RMB 10,000 ☐Decline to answer ☐
INCLUDE FOR: BRAZILLess than R$ 250 ☐
R$ 250 to 499 ☐R$ 500 to 749 ☐R$ 750 to 999 ☐
R$ 1,000 to 1999 ☐R$ 2,000 to 2,999 ☐R$ 3,000 to 4,999 ☐
R$ 5,000 to 10,000 ☐More than R$10,000 ☐
Decline to answer ☐
INCLUDE FOR: ARGENTINALess than $1500 ARS ☐
$1,500 to $1,999 ARS ☐$2,000 to $2,999 ARS ☐$3,000 to $4,999 ARS ☐$5,000 to $7,499 ARS ☐$7,500 to $9,999 ARS ☐
$10,000 to $15,000 ARS ☐$15,000 to $20,000 ARS ☐More than $20,000 ARS ☐
Decline to answer ☐
Page 43 of 47
INCLUDE IN: ARGENTINA, BRAZIL, CANADA, CHINA, UK, USA AND JAPANEXCLUDE IN: ALGERIA, FRANCE, GERMANY, ITALY SPAIN
D4. What religion are you now?SELECT ONE ANSWER ONLY
Buddhist ☐Christian ☐
Hindu ☐Islam / Muslim ☐
Jewish ☐Sikh ☐
Shenism-Taoism (CHINA ONLY) ☐Shinto (JAPAN ONLY) ☐
No religion ☐Other (specify)
______________________________________________________ ☐
Decline to answer ☐
INCLUDE IN: UK ONLY
D5. What is your ethnic group?PLEASE CHOSE ONE SECTION FROM A TO E, THEN TICK ONE BOX TO BEST DESCRIBE YOUR ETHNIC GROUP OR BACKGROUND
A. White ☐English/Welsh/Scottish/Irish ☐
Any other white background ☐B. Mixed/multiple ethnic groups ☐
White and Black Caribbean ☐White and Black African ☐
White and Asian ☐Any other Mixed/multiple ethnic background ☐
C. Asian/Asian British ☐Indian ☐
Pakistani ☐Bangladeshi ☐
Any other Asian background ☐D. Black/African/Caribbean/Black British ☐
African ☐Caribbean ☐
Any other Black/African/Caribbean background ☐E. Other ethnic group ☐
Any other ethnic group ☐
Decline to answer ☐
INCLUDE IN: USA ONLY
Page 44 of 47
D6a. Are you of Hispanic origin, such as Latin American, Mexican, Puerto Rican or Cuban?SELECT ONE ANSWER ONLY
Yes, of Hispanic origin ☐No, not of Hispanic origin ☐
Decline to answer ☐
D6b. Do you consider yourself?SELECT ONE ANSWER ONLY
Caucasian / White ☐African American ☐
Asian or Pacific Islander ☐Native American or Alaskan native ☐
Mixed racial background ☐Other race ☐
Decline to answer ☐
Page 45 of 47
INCLUDE IN: BRAZIL ONLY
D7. What race are you?SELECT ONE ANSWER ONLY
Branco ☐Negro ☐
Amarelo ☐Pardo ☐
Indigena ☐Nao quero responder ☐
INCLUDE IN: ARGENTINA ONLY
D8. In which country or countries were your grandparents born?SELECT ALL THAT APPLY
Argentina ☐France ☐
Germany ☐Italy ☐
Spain ☐UK ☐
Other European Country ☐South Asia (India, Pakistan, Sri Lanka) ☐
South East Asia / Pacific ☐Other Asian Country ☐
Other country in South America ☐USA ☐
Africa ☐Other (please specify)
______________________________________________________ ☐
Decline to answer ☐
Page 46 of 47
INCLUDE IN: CANADA ONLY
D8. What are the ethnic or cultural origins of your ancestors?SELECT ALL THAT APPLY
Canadian ☐English ☐French ☐
Scottish ☐Irish ☐
German ☐Italian ☐
Chinese ☐North American Indian ☐
South Asian ☐West Indian ☐
Other (please specify)______________________________________________________ ☐
Decline to answer ☐
Thank you very much for your co-operation.
Page 47 of 47