Clinical practice guidelines present relevant evidence to help health care professionals in making decisions about therapeutic options and include recommendations intended to optimise patient care. They are updated on a regular basis to take into account the latest evidence and practice. The European Society of Cardiology (ESC) and the European Respiratory Society (ERS) joint clinical practice guidelines for pulmonary hypertension were last updated in 2015 and a revision was due in 2022.
Commentary by Pisana Ferrari
For the first time ever, two pulmonary hypertension patient advocates, Gergely Meszaros, representing the ESC Patient Forum and the European Lung Foundation (ELF), and myself, representing the ESC Patient Forum and the Italian pulmonary hypertension association AIPI OdV, were invited by the ESC and the ERS to be members of the dedicated Task Force in charge of writing the new guidelines set up in 2020.
The Task Force was composed of some of leading world experts in pulmonary hypertension, many of whom Gergely and I already knew from our patient advocacy work in this field. It was a huge honour for me, personally, as a former pulmonary hypertension patient (now 20 years past double lung transplant), to be chosen to represent the European patient community.
Because of the COVID-19 pandemic all the Task Force meetings over the two-year period of its activity (2020-2022) took place virtually. Thanks to the excellent ESC and ERS organization we were able to proceed speedily, have very interesting online discussions and, in between one meeting an another, lively exchanges of emails, and complete the work on time for review and publication ahead of the 2022 ESC and ERS Congresses.
We integrated well into the team from the start and the overall environment was one of mutual trust and esteem. Our ideas found fertile ground and the patient insights and inputs that we offered were globally very well received. There were topics which were too scientific for us to make a useful contribution and we did not manage to cover all the issues on our patient agenda, but we did “open the door” for further future collaboration, and we view our participation in the Task Force as an important milestone.
We are delighted to see that value of patient knowledge and experience is increasingly being recognised not only by scientific societies but also by other healthcare stakeholders. The trend toward patient-centred healthcare is also gaining ground and there is more attention being paid to the importance of the patient-doctor relationship and the need for better patient-doctor communication as key factors for effective patient engagement and shared decision-making.
Patients recognised as active partners in care
Patients are recognised for the very first time as key partners in pulmonary hypertension care, Introduction, Chapter 2: “The complexity of managing PH requires a multi-faceted, holistic, and multidisciplinary approach, with active involvement of the patients with pulmonary hypertension in partnership with clinicians”
Recommendation to partner with patient associations
New section on patient associations and patient empowerment, 12.3, and recommendation that pulmonary hypertension centres ……”collaborate with patient associations on initiatives to empower patients and improve the patient experience, addressing issues such as health literacy, digital skills, healthy lifestyles, mental health, and self-management”.
A holistic view of the patient experience
A new section on patient-reported outcome measures (PROMs) was created, 6.2.6, which are described as “the patient’s experience of living with PH and its impact on them and their caregivers, including symptomatic, intellectual, psychosocial, spiritual, and goal-orientated dimensions of the disease and its treatment”. This reflects a broad view of the condition which goes well beyond the merely physical symptoms
Shared decision making
Information and shared decision making concepts are introduced in five different sections: Treatment strategies 6.3.4, Transplant surgery 6.3.8, Patient adherence 6.3.1.9, Pregnancy and Birth Control 6.3.2.1.1, Psychosocial support 6.3.1.8. “Prior to the treatment decisions, patients and their next of kin should be provided with appropriate and timely information about the risks and benefits of the treatment options so they can make the final, informed, and joint decision about the treatment with the medical team”. Family members are included in the shared decision making process
Empathic communication
Expanded section on psychosocial support 6.3.1.8. to include the need for “empathic and hopeful communication”. This concept is included also in the End-of-life care and ethical issues 6.3.11 and Pregnancy 6.3.2.1.1sections.
Patient engagement and adherence
•Section on patient adherence expanded. 6.3.1.9. To promote adherence, it is important to ensure that patients are involved in care decisions and appropriately informed about treatment options and rationale, expectations, side effects, and potential consequences of non-adherence”. Health literacy is included as a key factor in patient adherence.
Pregnancy and birth control
The recommendations on sex-related issues, including pregnancy and birth control were updated, are much more detailed and more nuanced, and have information and shared decision-making as key points. The guidelines recognise that pregnancy is a very sensitive topic and requires empathic communication and may require referral for psychological support. 6.3.2.1.1
Lay summary of clinical guidelines
This is also new, a lay summary in English of the new PH guidelines was produced this year with the input of guideline task force patient representatives. More languages are planned. This is an important step forward in contributing to patient education and empowerment and improving health literacy.
Patients at the official presentation of the guidelines
It was a great honour for me not only personally but as the representative of the European patient community to be invited to give the opening speech and closing remarks at the official presentation of the new guidelines at the ESC Congress 2022 during a session titled “Presenting the Task Force Members”. Members of the panel, from left: Roberto Badagliacca, George Giannakoulas, Pilar Escribano-Subias, Joanna Pepke-Zaba, Göran Rådegran, Marc Humbert, Stephan Rosenkranz, Marion Delcroix, Jean-Luc Vachiery, myself (on podium)
What’s new from a scientific point of view
The main changes with respect to the 2015 clinical guidelines from a medical point of view are summarised in Chapter 2.1, which we would refer you to, and in the table below, shown at the 2022 ESC Congress in Barcelona.
Conclusions
We are gradually moving away from the traditional view of medicine to one that is patient-centric and aligned with patients’ wants, needs, values and preferences. Patients are increasingly being recognised as key partners in a multidisciplinary and holistic view of pulmonary hypertension care. Their voice is being heard. The concepts of patient empowerment and shared decision making still present challenges, some of which are cultural and/or educational, but we are on the right track. The very fruitful collaborative work on the new pulmonary hypertension guidelines has set an important milestone for patients and bodes well for the future.
The full text of the 2022 ESC/ERS clinical guidelines on the diagnosis and treatment of pulmonary hypertension can be found in the European Heart Journal web page at this link