PH Awareness Month: survey results generated strong interest at European Respiratory Society (ERS) Congress
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:
The original target was to get 230 people to complete the survey. The high number of responses shows that patients and caregivers wanted to take the opportunity to make their challenges visible. This apparent need surprised even our partner, the European pulmonary hypertension association
(PHA Europe), who supported the coordination with its country member associations.
Martina Neubauer
Global Product Manager Therapeutic Area Cardiology & Pulmonology
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:
What we conclude from the survey is that it is key to create profile-specific initiatives and to offer tailored support programs not only for patients but also for caregivers.
Bianca Tan
Therapeutic Area Director Cardiology & Pulmonology
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."
Source & Image Credit: AOP Health
