pe
peol witohuwu l molmewlin awry peol withumnltalhorytscosmrl doholwvocl.omdooslC,lwsclP,Hl
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 %
1297 4 1254617304 %8£204 1%706734 5323404 % l
ppe
1297 4 1254617304 532%8£34£04 % p
10
s
:
ital number
NHS/Hosp
h:
Date of birt
lmonary e how pu tion determin every ques signed to er de sw is an re tionnai . Please es your This ques s your life st describ ct be fe af at ) th H R ion (P E NUMBE hypertens er the ON . g a tick ov perience. by placin ing with PH liv es your ex of e st describ perienc x that be recent ex ) in the bo d by my a tick ( Name:
, 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
0
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
/Y:0/K:0
/M:0 Process C:10
K:6 0/M:60/Y:0/ Process C:10 /K:0 M:100/Y:100 Process C:0/ /Y:80/K:0 /M:0 C:50 Process
V2.0
Mono
k
Blac Pantone:
5
294 Pantone:
032 Pantone: 368 Pantone:
12
12974566530%87£569739979£597
1297452 630%8£2 532002 255
30%
1297 4 5463094%7 4 1297456430%82 82947%£28 4 £4232042 548££9 4 30 84£984304 8499
50%
1297455630%8£ 3 997930%8£343 %730%8£3%7 3 93009 13349368733 85%368734%3 %8456383983 43983953 8938£ 1033•434 3 8343839533 9700%33%4£9 13393953 9973£46338383 38%3048%9• • 3 4£56346•3 8 • £3803£63463 93479363••373 4598363%453 048%9•
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. 1%£30473 £49330-75 838%4
3
1€53%%45343 98££934%075 3 43£934305 3 34383493£73 694556 1‚%8•999343 383953 3340%883 833%87383 3£3433 0%79%4 13053%4 3 435838033£• 3 333£8%• 3-330-75383 94634•4333 •3739553 4 • 37333•3 34395346•%3 33•
1ƒ%•5£3 %99303343 4343%4556343 1‚0-75383•4 3 73433%46 3 08%3•8%3„34638 3 46349 1…4380394£4 4358•3%6 1†73873803%63 %63‡756•34% 833£84383 8346
3
3
1ˆ8%48343 3 £75‰49393 %£5630-75 1383433 %638383£63 8%£45349• 3 34£3£8%3%%453
3£6347%• • 3 3 34334373 9%433%453 343953Š7£•3 98354380395349 3 4373£4• 1‹54 • 693%63%•3 7Œ 395539%75383 493£7349334• 103383£443 83953•553£3 4793%873 34634345983 98££93£8%3 %4599 13589308793983£3 4%3853943 7383%899„ 8£% 31…993%87•383 453838%4
No
No2 No 2 1
1
2 2
2 2
None ftofhns 5oiosmnIotsh savnhs hpospomahpsmeens hpo/sdno’srpo/s vfladtotsmeensy is 12974456320%0285 2£63095695 42745392095 36£075392095 6957025 7942£62095 4775695645 26253997325025 7%0374525£73£5 76£25£62755 £744£75475 69587957%745
None ftofhns5itsh5osm II avfpso/dve’ofhrsihs5 ’ors h5ihsl ffolhnsh sh5ovysn’iyhe5 foskbsuIdoh h5qs
None nfet hs5ioh
23%
None f ths5 i m f Itmfathvp /f edief’mtr ly None f ntne
21%
NN2 1
2 2
17%
Nonne fthss5th imIavph
None of these
15%
65%
None
12%
No 2 1
2 2
12
1297456350%823£5%05 235232%502%45 5
11
12
1297497452634320%4769846£34 3209406400900
53% 21% 5% 0% 11%
129745673709%85£87695697%97507 7£7£%740%8790977
12974272 56350%58£5 12974272 56350%58£5
12974272 56350%58£5 12974272 56350%58£5 1297452
632 0% 58£5535
129745625390%2820£940£9260%£3030 050£038£0 203470082£94590%28200
No
None nfths5ismIaIvaspnv/nnfs 129745636052%851297456366£5 None fthso 5i5sfmo mIa5tvo sn5ios5pf
None f
38% None ft
None ft
15% 15%
None ft
6%
5 times
4%
None ft
4%
18%
None nfths5ismIaIvasnpt/shnpo s 12972457456340%8£41394
None ft
35% None f
None ft
None ft
15% 10%
13%
No 2 1
2 2
5 times
1%
None fto hso hsf
0%
None oftho Nonen fto s5eift mso heseto5io n5hIoavo smIaevpesto pm/tdmohImo /dsmetvpo ’efsmr5lo ’IrdlIot/Io pmief mv nI5eao ’Iyv
8%
18%
No1
None
12
12 129
19
72475630%83£73%7298%736%£ 7
129724
1297
1297
30%
35%
24%
1299745637
0%39
8%
119
£36 129745964397 0%8£7%7£297 %69787 98£4£974£7 7
£120 12974 576320%70864 68£87%426864 £644£644 4
£170
129745630
62%98
4% 1297945942644 350%84£££
1297
19
1297495632092%75%8%907%£9 7 %3%8735%5737%4827%9%5 7 %8578207320327209443207 %9%57347%£9599578207 684%2947%3797 7
No
Noneo fto hf hs5 si
No1
46%
I have no opinion / I don’t really think about it
Noneono ftt ho Noneo s5ishmihI fethsn5o ifmitImta
19%
Noneo ftho s5isftifm
11%
22%
1%
38%
None ftohes5
None fthns fnsf5im tIavne hpn/dvnaenIen’hIte 12974561340%87£5 n efneIihnearhnfoonof5nIllfaderhdety
71%
None fothsoNo 5eimsoIavpo seosafpo None fthos It’s quite s/dpoe’’o s5ei om o5Is None fths difficult to t5es oi o5mt rNoasspi5oeiodlo ohas mvv take time oIat ivv hyhako5alyoe’’b off
8%
10%
7%
None fths5ihfmfIa f vep/dea’psrelfmf5v5Ipprf hIneftsftIyefItfpeIvt f 12974526332062%6206208£2 86507
4%
It’s very difficult to take time off
0%
None fths et5ie tmmIa5svf5sp 129741 5469341701%958
12
12 129
749
59
1297456730%794824%274£%8439373%47034950363974 0%70456736483£742497099 12974974557 630%8£59727 90£5
44%
1297449526730%8942 £245389
40%
129745630 %8£3020 37£
11%
1297459630%8£09
129745693094%%48£69 9 68£9498£69
129745630%8£ 4 949238£
4%
1297456390%%89£3%££ 439£3599 %53%939290%%89
12
12974576300%48£794848£7397048£78727987937 £9759055794848£7397
12 1297454630%84£24
50%
12974563404%86£493££4 £24238249394 84832439
43%
129747526307%287£7 7£26878
7%
129745625390%2820£9260
1297456390%8669£8£%9 £9
1297457639
970%8£9 76£
1297445963069%34892930£964543849 755%99
1297456390%96%%8974%9£557979%9 9689%%56974%9 75%67959£%9%6%5979%%9 057499%985%%995795£%9 9
11
12974563 0%785£73
1297
1129
129745613043%5958£09 1297456390459%5978£9 %49013%9%89%191%479 75957439873769 68%£43%5907£39%4£79 68%97439%979 564£8£5%943%749£5£%5943£2£959358£39
1297459693059 1297456300%4 689£476 %84£449 059%909 %494%49 6£4
1297456930%89 £6609306939 89%%948939 6940 9 294966%09
12
129744526230%%38
51% 1297445262370
21%
129745623700%2 8£7626
25%
1297452632 30%6%36236289%£
3%
No
None ftnhs5i nmenIeaatnIvs nonp eIn 1297452 7627330%68£56820£%623
No 2 1
None ftoh s5ishn mI mafov Iopo/f tmi d aoo5
46%
2 2
None fthns5hnf inmnIs ota v pnn/
32%
None fthns 5f sfh inmnIh None fntnh ofa v tnnp hnsn5i omI a vnnp
10%
3%
None fo tohs55hi
No1
Other
10%
I do not worry
None fo tohes
14%
42% 44%
12
12974256390352%3 8£075%3 31%653333 129724574563 4 0%8£439
47% 1297456530%60
12
68%150£05£
20%
1297456530%60 28150£05£
12
22%
1297456530 %6082£06%95 0 05 1297456530%60 68£5506%95 0 05£
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
