It was a great honour to be invited to speak at the ERN-LUNG webinar on quality indicators for adult pulmonary arterial hypertension care, which took place on December 8, 2023, where I was asked to explain why these are important from a patient perspective.
The webinar referenced an article in the European Journal of Heart Failure titled “European Society of Cardiology quality indicators for the care and outcomes of adults with pulmonary arterial hypertension”.§
The group of experts who authored the article identified five domains of care for patients with pulmonary arterial hypertension:
- Domain 1 – Structural framework
- Domain 2 – Diagnosis and risk stratification
- Domain 3 – Initial treatment
- Domain 4 – Follow-up
- Domain 5 – Outcomes
In total, 23 main and one secondary quality indictors for pulmonary arterial hypertension were selected.
What follows is an expanded versions of my slides at the webinar.
Speaking on the importance to patients, I would start by saying that the inclusion of two patient representatives—myself and Gergely Meszaros—in shaping these indicators recognizes the invaluable perspectives that patients can contribute to discussions on pulmonary arterial hypertension care.
Equally crucial, the team of 30 experts crafting these quality indicators comprises professionals with diverse backgrounds. This includes clinical, interventional, and imaging cardiologists, respiratory physicians, a specialist nurse, intensivists, and researchers. This diversity underscores the necessity for a comprehensive 360° view of pulmonary hypertension care.
In general, patients/patient representatives can only welcome this initiative which aims to:
- Facilitate the identification of areas requiring improvement.
- Motivate and enable healthcare professionals (HCPs) to develop enhancement plans.
- Support international comparisons, collaborations, and registries.
In particular, there are three areas in the paper that are very relevant and important from a patient perspective:
Holistic care
- The paper states that the aim of Domain 1 is “to provide a framework that stimulates a holistic evaluation for patients presenting with symptoms and signs suggestive of pulmonary arterial hypertension (…)”, and the presence of specialized multidisciplinary teams is identified as a main quality indicator (1.1)
- This is very important because it is a recognition of the complexity of the disease and the multifaceted needs of patients.
Quality of life
- The importance of quality-of-life assessment is recognized by the authors and is included in two different Domains, n°2 on Diagnosis and n° 4 on Outcomes.
- In domain 2.9 the “proportion of patients with a diagnosis of pulmonary arterial hypertension who have their quality of life assessed using a validated tool at the time of pulmonary arterial hypertension diagnosis” is identified as a main quality indicator.
- In Domain 4, the “proportion of patients with a diagnosis of pulmonary arterial hypertension who have their quality of life assessed using a validated tool at least every 6 months” is identified as secondary quality indicator.
Role of patient associations
- In the discussion on Domain 4 it is stated “given pulmonary arterial hypertension is a progressive condition in which symptoms, treatment and prognosis evolve over time, follow-up is a key component of pulmonary arterial hypertension care”.
- Patient associations are recognised as important players in the follow up process, as demonstrated by the “proportion of patients with a diagnosis of pulmonary arterial hypertension who have been informed about available patient association/support group(s)” being identified as a main quality indicator (4.2)
- Looking ahead, there is potential for mentioning information about patient associations at the time of diagnosis as well (Domain 2 – Diagnosis).
Photo credit: European Journal of Heart Failure
§ European Society of Cardiology quality indicators for the care and outcomes of adults with pulmonary arterial hypertension. Developed in collaboration with the Heart Failure Association of the European Society of Cardiology, Suleman Aktaa, Chris P. Gale, Margarita Brida, George Giannakoulas, Gabor Kovacs, Yochai Adir, Raymond L. Benza, Michael Böhm, Andrew Coats, Michele D’Alto, Pilar Escribano-Subias, Pisana Ferrari, Nazzareno Galiè, J. Simon R. Gibbs, Wendy Gin-Sing, Marius M. Hoeper, Marc Humbert, Irene M. Lang, Bradley A. Maron, Gergely Meszaros, Anton Vonk Noordegraaf, Laura C. Price, Joanna Pepke-Zaba, Göran Rådegran, Abilio Reis, Olivier Sitbon, Adam Torbicki, Silvia Ulrich, Stephan Rosenkranz, Marion Delcroix, European Journal of Heart Failure, First published: 16 March 2023, https://doi.org/10.1002/ejhf.2830