Patient support groups for pulmonary hypertension
A specific example of an overall patient pathway, specific to Hammersmith Hospital, is shown in appendix 1.
Patient support groups provide a valuable service for patients and their families, giving invaluable support and up-to-date information. They are frequently staffed by people who have personal experience of the disease.
The Pulmonary Hypertension Association UK (PHA UK)
Unit 2, Concept Court
Manvers
Rotherham
S63 5BD
Tel 01709 761450
Fax 01709 760265
Helpline 0800 389 8156
www.phassociation.uk.com
Europe [email protected]
Austria www.phaaustria.org
Belgium www.ph-vzw.be
France www.htapfrance.com
Germany www.phev.de
Italy www.assoamip.net/www.aipiitalia.org
The Netherlands www.pha-nl.com
Spain www.hipertensionpulmonar.es
Designated pulmonary hypertension centres in the UK and Ireland
Cambridge
- Pulmonary Vascular Diseases Unit, Papworth Hospital NHS Trust, Papworth Everard, Cambridge CB23 8RE
Tel: 01480 830 541
www.papworth-hospital.org.uk
Dublin
- Mater Misericordiae University Hospital, Eccles Street, Dublin 7
Tel: 00 353 1803 44 20
www.mater.ie
Glasgow
- Golden Jubilee National Hospital, Glasgow. Scottish Pulmonary Vascular Unit, Beardmore Street, Clydebank, Western Dunbartonshire, Glasgow G81 4HX
Tel: 0141 951 5497
www.spvu.co.uk
London
- Pulmonary Hypertension Service, Hammersmith Hospital, Du Cane Road, London W12 0HS
Tel: 0208 383 2330 0203 313
www.pulmonary-hypertension.org.uk - Royal Brompton Pulmonary Hypertension and Adult Congenital Heart Centre, Sydney Street, London SW3 6NP
Tel: 0207 351 8362
www.rbht.nhs.uk - Royal Free Hospital, Pond Street, London NW3 2QG
Tel: 0207 794 0500 extension 8648
www.royalfree.nhs.uk - UK Pulmonary Hypertension Service for Children, Great Ormond Street Hospital, London WC1N 1EH
Tel: 0207 405 9200 extensions 1005, 1007, 8495
www.ich.ucl.ac.uk
Newcastle
- Northern Pulmonary Vascular Unit, Regional Cardiothoracic Centre, Freeman Hospital, Newcastle upon Tyne, NE7 7DN
Tel: 0191 223 1968
www.newcastle-hospitals.org.uk
Sheffield
- Pulmonary Vascular Unit, Royal Hallamshire Hospital, Glossop Road, Sheffield S10 2JF
Tel: 0114 271 3940
www.phsheffield.org.uk
Trial acronyms and abbreviations in PAH
Trial acronyms
- AIR Aerosolized Iloprost Randomized study
- ALPHABET Arterial Pulmonary Hypertension And Beraprost European Trial
- ARIES Ambrisentan in pulmonary arterial hypertension, Randomized, double-blind, placebo-controlled, multicentre, Efficacy Study
- BENEFIT Bosentan Effects in iNopErable Forms of chronic Thromboembolic pulmonary hypertension
- BREATHE Bosentan Randomised trial of Endothelin Antagonist THErapy
- COMBI COMbination therapy of Bosentan and aerosolized Iloprost in idiopathic pulmonary arterial hypertension
- EARLY Endothelin Antagonist tRial in mildly symptomatic pulmonary arterial hypertension patients
- PACES Pulmonary Arterial hypertension Combination study of Epoprostenol and Sildenafil
- PHIRST Pulmonary arterial Hypertension and ReSponse to Tadalafil
- STEP Safety and pilot efficacy Trial of inhaled Iloprost in combination with bosentan for Evaluation in Pulmonary arterial hypertension
- STRIDE Sitaxsentan To Relieve ImpaireD Exercise
- SUPER Sildenafil Use in Pulmonary arterial hypertension
- TRIUMPH inhaled TReprostinil sodium in Patients with severe Pulmonary arterial Hypertension
Other common abbreviations
- APAH associated pulmonary arterial hypertension
- ASD atrial septal defect
- BAS balloon atrial septostomy
- BNP brain natriuretic peptide
- CCB calcium channel blocker
- CHD congenital heart disease
- CI cardiac index
- CO cardiac output
- COPD chronic obstructive pulmonary disease
- CTD connective tissue disease
- CT computed tomography
- CTEPH chronic thromboembolic pulmonary hypertension
- ECG electrocardiogram
- ERA endothelin receptor antagonist
- HIV human immunodeficiency virus
- IPAH idiopathic pulmonary arterial hypertension
- LV left ventricle
- NO nitric oxide
- PA pulmonary artery
- PAH pulmonary arterial hypertension
- PCH pulmonary capillary haemangiomatosis
- PAP pulmonary arterial pressure
- PEA pulmonary endarterectomy
- PH pulmonary hypertension
- PVOD pulmonary veno-occlusive disease
- PVR pulmonary vascular resistance
- PWP pulmonary wedge pressure
- RAP right atrial pressure
- RHC right heart catheterisation
- RV right ventricle
- 6MWT six-minute walk test
- TPG transpulmonary pressure gradient
- WHO-FC World Health Organization Functional Class
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References
1 Haworth S, Flynn Y, Hislop AA. Survival and quality of life in children with severe pulmonary hypertension. Heart 2006;92 (Suppl 2):A14.
2 Hislop AA, Flynn Y, Haworth SG. Summary of the experiences of the UK pulmonary hypertension service for children 2001-2005. Proceedings of the American Thoracic Society 2006;3: A57.
3 Diller GP, Gatzoulis MA. Pulmonary vascular disease in adults with congenital heart disease. Circulation 2007;115:1039–50. http://dx.doi.org/10.1161/CIRCULATIONAHA.105.592386
4 Galie N, Manes A, Palazzini M et al. Management of pulmonary arterial hypertension associated with congenital systemic-to-pulmonary shunts and Eisenmenger’s syndrome. Drugs 2008;68:1049–66. http://dx.doi.org/10.2165/00003495-200868080-00004
5 Galie N, Beghetti M, Gatzoulis MA et al. Bosentan therapy in patients with Eisenmenger syndrome: a multicentre, double-blind, randomized, placebo-controlled study. Circulation 2006;114:48–54. http://dx.doi.org/10.1161/CIRCULATIONAHA.106.630715
6 Dimopoulos K, Inuzuka R, Goletto S, Giannakoulas G, Swan L, Wort SJ, Gatzoulis MA. Improved survival among patients with Eisenmenger syndrome receiving advanced therapy for pulmonary arterial hypertension. Circulation 2010;121:20–5. http://dx.doi.org/10.1161/CIRCULATIONAHA.109.883876
7 Mukerjee D, St George D, Coleiro B et al. Prevalence and outcome in systemic sclerosis associated pulmonary arterial hypertension: application of a registry approach. Ann Rheum Dis 2003;62:1088–93. http://dx.doi.org/10.1136/ard.62.11.1088
8 Kawut SM, Taichman DB, Archer-Chicko CL et al. Hemodynamics and survival in patients with pulmonary arterial disease related to systemic sclerosis. Chest 2003;123:344–50. http://dx.doi.org/10.1378/chest.123.2.344
9 Krowka MJ, Swanson KL, Frantz RP et al. Portopulmonary hypertension: results from a 10-year screening algorithm. Hepatology 2006;44:1502–10. http://dx.doi.org/10.1002/hep.21431
10 Opravil M, Pechere M, Speich R et al. HIV-associated primary pulmonary hypertension. A case control study. Swiss HIV Cohort Study. Am J Respir Crit Care Med 1997;155:99005.
11 Olschewski H, Simonneau G, Galie N et al. Inhaled iloprost for severe pulmonary hypertension. N Engl J Med 2002;347:322–9. http://dx.doi.org/10.1056/NEJMoa020204
12 Pengo V, Lensing AW, Prins MH et al. Incidence of chronic thromboembolic pulmonary hypertension after pulmonary embolism. N Engl J Med 2004;350:2257–64. http://dx.doi.org/10.1056/NEJMoa032274
13 Keogh AM, Mayer E, Benza RL et al. Interventional and surgical modalities of treatment in pulmonary hypertension. J Am Coll Cardiol 2009;54: S67–S77. http://dx.doi.org/10.1016/j.jacc.2009.04.016
Suggested reading:
Rosenzweig EB, Ivy DD, Widlitz A et al. Effects of long-term bosentan in children with pulmonary arterial hypertension. J Am Coll Cardiol 2005;46;697–704. http://dx.doi.org/10.1016/j.jacc.2005.01.066
Humpl T, Reyes JT, Holtby H et al. Beneficial effect of oral sildenafil therapy on childhood pulmonary arterial hypertension: twelve-month clinical trial of a single-drug, open-label, pilot study. Circulation 2005;111:3274–80. http://dx.doi.org/10.1161/CIRCULATIONAHA.104.473371
Humbert M, Sitbon O, Chaouat A et al. Pulmonary arterial hypertension in France: results from a national registry. Am J Respir Crit Care Med 2006;173:1023–30. http://dx.doi.org/10.1164/rccm.200510-1668OC
Herve P, Lebrec D, Brenot F et al. Pulmonary vascular disorders in portal hypertension. Eur Respir J 1998;11:1153–66. http://dx.doi.org/10.1183/09031936.98.11051153
Auger WR, Kim NH, Kerr KM et al. Chronic thromboembolic pulmonary hypertension. Clin Chest Med 2007;28:255–69. http://dx.doi.org/10.1016/j.ccm.2006.11.009
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