Pulmonary Hypertension Survey Reveals Needs of Family Caregivers

Vienna, 18.11.2024. PHA Europe presented the results of a patient survey¹ conducted in cooperation with AOP Orphan Pharmaceuticals GmbH (AOP Health) and OrphaCare in a poster presentation at the annual ERS congress in Vienna in September. The survey investigated the needs and challenges of PH-patients and their family caregivers and the impact of the disease on their daily lives. It also examined the main reasons why pulmonary hypertension patients and their caregivers interact with patient associations. The most interesting result was that caregivers lack and therefore seek psychological support in the first place. Patients, on the other hand, are typically looking for information about the disease and tips on how to manage it. Furthermore, the survey shows that it still takes 35 months on average for patients to receive their diagnosis. For AOP Health this means that we need to increase awareness among general practitioners, but also among lay people.

AOP Health conducted the multinational survey in 2023 to better understand the needs and hurdles of pulmonary hypertension patients and their caregivers. The goal was to identify the unmet needs of PH patients, caregivers and patient associations and the key areas in which they need support. The survey included 619 people in 9 European countries (Germany, Italy, Austria, Spain, Sweden, Poland, Hungary, Czech Republic, Slovakia). 

Conference abstract and poster here.

Martina Neubauer, Global Product Manager Therapeutic Area Cardiology & Pulmonology, who designed and coordinated the project says: 

Multiple daily challenges

In line with the expectations, the survey indicated that both patients and caregivers experience limitations in their daily activities, in their leisure time, concerning travelling issues, and in pursuing their hobbies. This explains why the second most important reason for interacting with a patient association in both groups was the desire of receiving support for the daily management of their treatment, followed by interaction with other patients and carers.

Distinct expectations 

Still the survey’s outcomes show that patients and caregivers have distinct expectations when interacting with a patient association and that their needs differ greatly to a certain extent.

Bianca Tan, Therapeutic Area Director Cardiology & Pulmonology, states:

Next steps

As the survey showed country-specific differences, the next step is to evaluate the local results and to present them. Martina Neubauer emphasizes: "We are happy to support the individual patient associations in Europe in building actions and initiatives tailored to the needs of the patients and caregivers."

About AOP Health

The AOP Health Group incorporates several companies including AOP Orphan Pharmaceuticals GmbH with its seat in Vienna, Austria (“AOP Health”). The AOP Health Group is the European pioneer for integrated therapies for rare diseases and in critical care. Over the past 25 years, the Group has become an established provider of integrated therapy solutions operating from its headquarters in Vienna, its subsidiaries and representative offices throughout Europe and the Middle East, as well as through partners worldwide. The claim “Needs. Science. Trust.” sums up the foundation of the Group’s success: establishing trust through a continually high level of investment in research and development and a highly consistent and pragmatic orientation towards the needs of all stakeholders – especially the patients and their families as well as the healthcare professionals treating them.

Press Contact.

Mag. Nina Roth, MAS

Head of Corporate Communications
nina.roth[at]aop-health.com

Photocredit Stock-Photo: "AdobeStock_724646019“
Photocredit Portraits: "AOP Health/Studio Koekart“

¹ "Reasons to join pulmonary hypertension patient associations – do not forget the caregivers!" 
Eva Otter (PHA Europe, Vienna, Austria),
Roberto Badagliacca (Department of Cardiovascular and Respiratory Sciences, Sapienza University of Rome, Rome, Italy), 
Regina Steringer-Mascherbauer (Department of Cardiology, Ordensklinikum Linz GmbH Elisabethinen, Linz, Austria),
Khodr Tello (Department of Internal Medicine, Justus-Liebig-Universität Gießen, Germany),
Gerald Fischer(PHA Europe, Vienna, Austria),
Ralf Lenhard (OrphaCare GmbH, Vienna, Austria),
Martina Neubauer (AOP Orphan Pharmaceuticals GmbH, Vienna, Austria),
Hall Skara (PHA Europe, Vienna, Austria) and
Carmine Dario Vizza (Department of Cardiovascular and Respiratory Sciences, Sapienza University of Rome, Rome, Italy)