European Patient Group Highlights Urgent Need for Comprehensive Care for People Living with Pulmonary Arterial Hypertension

5th WORLD SYMPOSIUM ON PULMONARY HYPERTENSION, NICE, France, February 28, 2013 /PRNewswire/ --

New data presented at the 5^th World Symposium on Pulmonary Hypertension reveals hidden but significant impact of PAH on patient's well-being

Results from an international survey providing new insights into Pulmonary Arterial Hypertension (PAH) have revealed the impact of the disease, beyond the physical burden, is under-estimated. Significant findings from the International PAH Patient and Carer Survey, the first to explore the perspective of the carer as well as the patient, have led to patient groups calling for a greater understanding of the wider social and emotional impact of PAH on patients and those that care for them and the need for improved management of people affected by this debilitating condition.

The PAH survey identified that the ability to work is of particular concern, revealing a significant impact on household finances leaving many families living with PAH below the national country income average. Four out of five patients stated that their employment was affected by PAH, with nearly half unable to work or requiring help to do so, this increased to nine out of ten in patients whose condition had declined to the most severe form of PAH. Carer's capacity to work was also affected with nearly one in three carers having stopped work or changed working conditions as a result of caring for someone with PAH and over one in ten having given up work completely.

Pisana Ferrari, Vice President, The European Pulmonary Hypertension Patient Association (PHA Europe) said, "These data provide valuable insights into the negative effects of PAH on the daily lives and activities of patients and their carers. They suggest a major need for improving the provision of care relating to the total impact of PAH. Patient organizations have an important role, together with healthcare professionals, to work towards achieving improved support and resources. The ultimate aim should be to improve all aspects of the lives of patients with PAH and their carers so they can enjoy the best outcomes and quality of life achievable."

Professor Nazzareno Galiè from the University of Bologna, Co-President of the Fifth World Symposium on Pulmonary Hypertension commented: "It's very important for us to have presented in the World Symposium the data from this survey, which was guided by a steering committee including patient organisation representation from PHA Europe, PHA UK and PHA US, together with other important scientific contributions, to highlight the close collaboration between the scientific community and the association of patients."

In the survey PAH was revealed to have a heavy burden on social and emotional wellbeing, with patients reporting a wide range of negative emotions including fear, frustration, anger and taking little pleasure in activities they used to enjoy. Relationship issues also emerged as a previously under-appreciated area of concern for PAH patients and carers. Almost all patients reported their ability to be intimate with their partner was severely affected, due to low self-esteem and the inability to exert themselves physically.

Many patients and carers reported feelings of isolation, often caused by their PAH not always being physically 'visible'. Currently, 50% of patients and carers feel a lack of understanding about the condition contributes to their isolation. As a result their world becomes narrowed, with PAH patients reducing activities outside their home or time spent with friends. Additionally their 'social identity' blurs as they can no longer perform activities they saw as part of their role previously. PHA Europe wants to ensure that, despite the invisible presentation of the disease; the emotional needs of patients are not ignored, helping patients to feel 'visible' and lead a fulfilled life.

Professor Loic Guillevin, Co-chair of the International patient and carer survey said: "These are important data being presented at the Fifth World Symposium on Pulmonary Hypertension today. They should make us think about every aspect of our PAH patient's disease and how it impacts on their ability to live a fulfilling life. This is a conversation we should be having more regularly with our patients."  

Dr Luke Howard, Consultant Respiratory Physician and steering committee member, commented: "The survey confirms the central role of a multidisciplinary approach involving physicians, nurses, social workers, psychologists and patient organisations in the management of people living with PAH. This provides the means to undertake a thorough assessment of the emotional and social wellbeing of the patient and carer, as well as clinical symptoms of the patient."

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Notes to Editor:

About the PAH Patient and Carer Survey

PAH is a rare disease but one which has a considerable impact on morbidity and mortality. A progressive disease, caused by the narrowing of the pulmonary arteries which connect the right side of the heart to the lungs,  the symptoms of PAH include breathlessness, fatigue, dizziness, chest pain and edema, which often worsen during physical activity. Currently, there is no cure for PAH but treatment options are available.  

The PAH Patient and Carer Survey included responses from 326 PAH patients and 129 carers from five countries across Europe; France, Germany, Italy, Spain and the UK. A multidisciplinary steering committee of PAH specialists, PAH specialist nurses and patient group representatives, led the development of the survey content and analysis of results to ensure medical and practical relevance.

The full report can be downloaded from the PHA Europe website - http://www.phaeurope.org/projects-activities/pah-patient-and-carer-survey/.

Additional findings:

• The challenges imposed by living with PAH exacted an emotional toll on patients and carers. Physical, practical and social changes imposed by PAH resulted in negative emotions, including fear, guilt, loss and feelings of uselessness.
• Three out of four carers who are partners of PAH patients reported a decrease in sexual relations and intimacy, due to the carer's fear of physical activity making the patient more ill.
• PAH patients and carers reported gaps in information, particularly the emotional aspects of coping with PAH and financial and administrative implications. Patient organisations emerged as playing a leading role in providing information and support for both patients and carers.

The International PAH Patient and Carer report was developed under the guidance of PAH specialists and patient organisations and supported by Actelion Pharmaceuticals Ltd., Switzerland.

Rare Disease Day

February 28, 2013 also marks the sixth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 24 European countries raising-awareness of these often unknown conditions.

For further information please contact:

PHA Europe
Pisana Ferrari
Vice President
+39-3484023432
p.ferrari@phaeurope.org 

Donna Wright
Packer Forbes
+44(0)20-7036-8550
donna@packerforbes.com