In our ongoing efforts to advance the understanding and treatment of pulmonary hypertension, the Pulmonary Hypertension Knowledge Sharing initiative places a strong emphasis on sharing best practices. We are deeply grateful to Prof. Marc Humbert for graciously accepting our invitation to shed light on the crucial topic of shared decision making and patient empowerment within the French Pulmonary Hypertension National Referral network—an exemplary model of excellence in pulmonary hypertension care. By emphasizing patient empowerment, the French national network has demonstrated its commitment to providing holistic and patient-centred care, ultimately improving the overall well-being and outcomes of individuals living with PH.
Pulmonary hypertension care in France
In France pulmonary hypertension care is organized as a network commissioned by the Ministry of Health, with a National Pulmonary Hypertension Reference Center, located at Bicêtre University Hospital (medical care), with close links with the Marie-Lannelongue Hospital (surgery), both part of the Paris-Saclay University, and 23 Regional Pulmonary Hypertension Competence Centers across France, including two overseas centers in “La Réunion” island (Indian Ocean), and “La Martinique” (Caribbean). All pulmonary hypertension centers are composed of a multidisciplinary team including pulmonologists, cardiologists, and internal medicine specialists. Several centers also include a dedicated pediatric team and others have developed shared care arrangements with more distant hospitals to take care of patients locally, under supervision from the Regional Competence Center. Competence Centers must meet the criteria established by the ESC/ERS clinical guidelines on the diagnosis and treatment of pulmonary hypertension. *
Q. Professor Humbert, you could kindly share your perspectives on the value of shared decision making in your clinical practice and patient care, speaking from your personal clinical experience? §
R. Prof. Marc Humbert
Thank you very much. It’s a very important question indeed, and of course, one size doesn’t fit all. I mean, you can have different approaches in different settings, there are very different approaches in different places, according to organization of care, socio-cultural differences, etc. That being said, I’m lucky to work in what we call a referral center, so we have some resources to develop shared decision making in a more professional way, and we try to help the whole network in France and in Europe now to use the instruments we develop.
Specialised nurses
So, the first service we have decided to offer to the patient and next of kin is specialized pulmonary hypertension nurses, who are education nurses, and are able to devote time with every single patient, irrespective of the education level, age, socio-cultural background etc. The nurses are in charge of education, and as you may know, some treatments are more difficult than others to be administered, some are given by inhalation, some are intravenous or subcutaneous treatments, etc., so they deserve a lot of attention, explanations and time.
Psychological support
On top of that, we have psychologists who are not medical doctors but who are trained to spend time and speak with a patient and their family. This is not for everybody, it’s available as needed for patients who wish to have that kind of support. This proves to be particularly important when one discusses sensitive issues such as family planning, genetic counselling, complex therapies, lung transplantation, etc…
Provision of plain language information
We also develop lay summaries, leaflets, and educational electronic resources. For example, the European guidelines on pulmonary hypertension are now available in lay language. This is a valuable document to initiate the discussion. We will have it available in different languages shortly.
Close collaboration with patient associations
Last but not least, we have a strong and friendly relationship with patient associations, and the patient associations are the best possible supporters of good shared decision. With my colleagues, I regularly attend conferences organized by the French Pulmonary Hypertension Association (HTaP France) where I try to summarize in lay language the guidelines, as well as recent research on pulmonary hypertension and new treatments – not only drugs but also interventions. This is the occasion to develop ideas and concepts with patients and patient advocates on how to implement shared decision and support patient empowerment in my country.
Conclusions
Patient empowerment has been long awaited and is now a major priority of the pulmonary hypertension community. It benefits from the actions of organized networks and patient associations sharing the same goal to find the best possible solutions for all forms of pulmonary hypertension, and ideally a cure.
Footnotes
* The description of the French network system is based on an article by Dr. Simon Gibbs and Prof. Olivier Sitbon published in Advances in Pulmonary Hypertension
§ This article is based on a reply from Prof. Marc Humbert to a question from the audience during the AfPH webinar on “Partnering with Patients and Shared Decision Making: A New Paradigm in PH care?”, June 6, 2023. The article has been reviewed by Prof. Marc Humbert himself.
