Clinical trials: What matters to you?

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112

people w hyperte ith pulmonary nsion c o this sur mpleted vey.

45 65

77%

peoel ewitel

99% said they spoke ‘very fluent’ English

91 %

peo

peol wiept huemoenaeo 1 %

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, place item below For each

energy

flight of lk up one less When I wa not breath stairs I am public ent out in nfid co I am my PH ds despite places/crow PH does

ol not contr

0

1

2

3

4

5

0

1

2

3

4

5

my life

endent I am indep l I never fee

1

0

1

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n like a burde

2 2

3 3

4 4

all energy at

flight lk up one When I wa athless am very bre of stairs I all in public at t en confid of my PH I am not use ca ds be places/crow my life controls ly lete PH comp

5

4

3

2

1

0

sted feel exhau

I have no

5

4

3

2

1

0

I always

5

4

3

2

1

0

t need to res I always day during the

5

4

3

2

1

0

d l exhauste I do not fee s of I have lot

1

0

ver athless ne Being bre rsations my conve interrupts t ed to res ne t no I do day during the

ays athless alw Being bre rsations my conve interrupts

5

4

3

2

frustrate I am very sness breathles

5

4

3

2

1

0

by frustrated I am not lessness my breath

5 5

ndent letely depe I am comp I always

burden feel like a

t e: SpoDat Mono

Total: Process

pulmonary

hypertens

ion asso

ciation

n Octo 54mmUK. Date of publicatio © 2013 PHA idetity Size for the le Minimum text legib to keep all

ber 2013

Copyright

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294 Pantone:

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12

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30%

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37%

12974562300%2 80380£092 12974562 755320355%82 04212 129745569 £6 2 02 3079%8£9 452£8 55%9875

38%

32%

25%

Respondents were asked how sleep problems affect what they can do during the day.

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3

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No

No2 No 2 1

1

2 2

2 2

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None nfet hs5ioh

23%

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21%

NN2 1

2 2

17%

Nonne fthss5th imIavph

None of these

15%

65%

None

12%

No 2 1

2 2

12

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11

12

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53% 21% 5% 0% 11%

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No

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None f

38% None ft

None ft

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5 times

4%

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18%

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13%

No 2 1

2 2

5 times

1%

None fto hso hsf

0%

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No1

None

12

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19

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No

Noneo fto hf hs5 si

No1

46%

I have no opinion / I don’t really think about it

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19%

Noneo ftho s5isftifm

11%

22%

1%

38%

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It’s very difficult to take time off

0%

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12

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12

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43%

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3%

No

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46%

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32%

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10%

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None fo tohs55hi

No1

Other

10%

I do not worry

None fo tohes

14%

42% 44%

12

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22%

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11%

27

A final word “I would like to extend my sincere thanks to everyone who shared their thoughts in this important survey. This is the first time the UK’s PH community has been asked about trial design in this way, and the results will have a direct impact on future research into treatments for pulmonary hypertension.

At the PHA UK we will continue to work with researchers to ensure that the needs of our community are considered, and that trials are truly shaped around the patient.

Here’s to the future, together.”

Dr Iain Armstrong Chair, PHA UK