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Haemophilia Experiences, Results and Opportunities (HERO)

Questionnaire for Adult People with Haemophilia (PWH)

Respondent ID

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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

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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 ☐

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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 ☐ 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 gender Male ☐ 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 S5 Haemophilia 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 No a) Replacement FVIII (Factor VIII) ☐ ☐ b) Cryoprecipitate ☐ ☐ c) Fresh Frozen Plasma (FFP) ☐ ☐ d) DDAVP (desmopressin) ☐ ☐ e) Other (PLEASE SPECIFY) ☐ ☐ _______________________________________________

_______________________________________________

GO TO S6

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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 No a) 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


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

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S10. Have you experienced a bleed into one or more joints in the last 12 months? SELECT ONE ANSWER ONLY


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.

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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 (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

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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 W7 No ☐ GO TO W9 Don’t know / can’t remember ☐ GO TO W9

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W7.

What was this advice? PLEASE SELECT ALL THAT APPLY

Advice 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’t Know

6

☐ ☐ ☐ ☐ ☐ ☐ GO TO A1

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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

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) ☐ ☐ ☐ ____________________________________

________________________________________________________________________

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None of the above ☐ ☐ ☐

GO TO F1a

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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…?

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 F1d No ☐ 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

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F2. Do you have one or more…?

Who has (have)

haemophilia

Who does (do) NOT

have haemophilia

Who is (are) not

confirmed to have / not have

haemophilia

Older 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

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Children C1. Do you have your own biological children (i.e. not fostered or adopted)?

SELECT ONE ANSWER ONLY Yes ☐ GO TO C2 No ☐ GO TO C3 Decline to answer ☐ GO TO C3 C2. How many daughters and how many sons? Daughters GO TO C4 Number of

daughters

Sons GO TO C4 Number 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 C5 No ☐ 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

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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 C9 No ☐ 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


6 ☐ ☐ ☐ ☐ ☐ ☐

GO TO U1

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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

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 U2 GO TO U2 Quite satisfied ☐

Quite dissatisfied ☐ GO TO U3 GO TO U3 Very 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

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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 ☐

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

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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

two A select

few Most of them

All of them

Not applicable

a) 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

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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’

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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 satisfied

Moderately satisfied

Neither satisfied

nor dissatisfied

Moderately dissatisfied

Extremely dissatisfied

Decline to

answer Aside 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

Months OR Years GO 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 X6 No ☐ 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


6 ☐ ☐ ☐ ☐ ☐ ☐

GO TO E1

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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

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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/ Decline

I 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. Mobility

PLEASE 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-care PLEASE 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 ☐

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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 / discomfort


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 / depression


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 ☐

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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

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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 Q1 A little bit ☐ GO TO Q1 Moderately ☐ GO TO Q1 Quite a lot ☐ GO TO E9 Extremely ☐ 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

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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 ☐ ☐ ☐ ☐ ☐

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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

☐ ☐ ☐ ☐ ☐

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13. My parents overprotected me because of my haemophilia ☐ ☐ ☐ ☐ ☐

14. 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 Q4 No ☐ 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 Q5 No ☐ GO TO T1 Don’t know / decline to answer ☐ GO TO T1

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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

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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.

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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 ONLY A 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

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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 T9 OTHERWISE 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

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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 bleeds Muscle bleeds Other (SPECIFY) ________________________________________________________

________________________________________________________

Don’t know if joint or muscle bleeds

PLEASE CHECK THAT YOUR ANSWER AT T13a IS MORE THAN OR EQUAL TO T12a ANSWER 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 bleeds Muscle 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.

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T14. Do you have a specific joint that suffers more often from bleeds than any other joint?

SELECT ONE ANSWER ONLY Yes ☐ GO TO T15 No ☐ 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

controlled

1 2 3 4 5 6 7 8 9 10

☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐

GO TO T18

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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 answer

Exercise ☐ ☐ ☐ ☐ ☐ ☐ 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 months Don’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 T22 Quite easy ☐ GO TO T22 Quite difficult ☐ GO TO T21 Very 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

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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 T22

Every 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

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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 ANSWER c) 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

I3 Main

sources of information

I4 Use most

often I5

Most useful Haematologist / 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 ☐ ☐ ☐

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Meetings and seminars ☐ ☐ ☐ Scientific journals ☐ ☐ ☐ 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

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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 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

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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

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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

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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, SPAIN Less 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

☐ ☐ ☐ ☐ ☐

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INCLUDE FOR: UK Less 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 CANADA Less 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: JAPAN Less 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: ALGERIA Less 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 ☐

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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: CHINA Less 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: BRAZIL Less 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: ARGENTINA Less 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 ☐

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INCLUDE IN: ARGENTINA, BRAZIL, CANADA, CHINA, UK, USA AND JAPAN EXCLUDE 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)

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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 ☐

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INCLUDE IN: USA ONLY 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 ☐

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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)

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Decline to answer ☐

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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)

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☐

Decline to answer ☐ Thank you very much for your co-operation.

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