Shared decision-making for people with heart valve disease

HPP collaborated with the Global Heart Hub to develop patient resources to support guideline‑recommended shared decision‑making

Shared decision-making for people with heart valve disease

Context

Shared decision-making in heart valve disease has proven benefits. It has been shown to improve quality of life for people living with heart valve disease – but too often, it does not take place.

People who are diagnosed with heart valve disease are often confronted with a wide range of treatment options when they ultimately require a valve repair or replacement. In 2021, the European Society of Cardiology (ESC) and the European Association for Cardio‑Thoracic Surgery (EACTS) published new guidelines for the management of valvular heart disease, which state that ‘the patient and their family should be thoroughly informed and assisted in their decision on the best treatment option’.

Shared decision-making is not simply a case of clinicians educating a person about their illness. It involves doctors and patients working together to choose the most suitable treatment, with the patient’s personal preferences and goals considered fully alongside clinical evidence and the doctor’s expertise.

What we’ve achieved

The Global Heart Hub commissioned HPP to lead on the research and writing of a patient guide to shared decision-making in heart valve disease. Working with an Advisory Board comprising clinical and patient experts, we drafted a full patient guide and a one-page supporting summary, which people with heart valve disease can print and take with them to medical appointments.

The patient guide is based around key stages in the patient journey, from diagnosis to heart valve repair or replacement. It outlines what the ESC/EACTS guidelines say and the opportunities for the person with heart valve disease to participate in decisions about their care at each step of the process. It also contains a shared decision-making checklist to help guide conversations with healthcare professionals.

This guide seeks to empower people with heart valve disease to express their goals and treatment preferences to their care team. It does not seek to replicate or replace established clinical guidelines for the management of valvular heart disease.

Key partners and stakeholders

Advisory Board:

  • Victoria Delgado, University Hospital Germans Trias i Pujol, Spain
  • Ruggero De Paulis, European Hospital, UniCamillus University, Italy
  • María Cecilia Salvador González, Asociación Española de Portadores de Válvulas Cardíacas y Anticoagulados, Spain
  • Sandra Lauck, St Paul’s Hospital, The University of British Columbia, Canada
  • Patrick Myers, European Association for Cardio-Thoracic Surgery, Lausanne University Hospital, Switzerland
  • Jens Näumann, Initiative Herzklappe, Germany
  • Bernard Prendergast, St Thomas’ Hospital and Cleveland Clinic London, UK
  • Katja Teichert, Meine Herzklappe, Austria
  • Wil Woan, Heart Valve Voice, Global Heart Hub Heart Valve Disease Patient Council, UK

Project funding

These documents were commissioned by the Global Heart Hub and written by The Health Policy Partnership, with co-authorship from an expert Advisory Board. The Advisory Board had full editorial control over content. The initiative was supported by a grant from Edwards Lifesciences and Medtronic.

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