Disparity in diagnosis and treatment of cardiovascular disease in women: a call to joint action from the European Society of Cardiology Patient Forum

Cardiovascular disease (CVD) is the leading cause of death in women worldwide1 but remains understudied, under-recognised, underdiagnosed, and undertreated. In 2021, the Lancet women and cardiovascular disease Commission published a comprehensive document1 outlining the current state of women’s cardiovascular health landscape. It summarized existing evidence, identified knowledge gaps, and made recommendations in a bid to reduce the global burden of cardiovascular disease in women. This evidence goes back to as early as 1959,2 but while there are attempts to address some of these concerns, the reality and experience for ‘us’, the female patients on the ground, remains largely unchanged. For this reason, the European Society of Cardiology (ESC) Patient Forum recently established a workstream on CVD in women. Regardless of what type of heart condition they were diagnosed with, female members of the Forum all too often felt that their gender caused delays in diagnosis and treatment. There is a mounting sense of frustration among female patients, their families, and caregivers. While they welcome the increase in literature on women’s heart health in circulation, and the tremendous effort of a few, they feel this literature must be falling on deaf ears and the call to action is ignored. There seems to be no noticeable change on the ground. ‘The paramedic contacted our community hospital for further advice—but the doctor suggested that I had possibly had an anxiety/panic attack and said I could be left at home’, remembers Mary Galbraith, spokesperson of the workstream, who was diagnosed with spontaneous coronary artery dissection (SCAD) only because the paramedic overruled the doctor’s advice and took her to the hospital. ‘As a teenage girl, I was repeatedly told by our family doctor that my constant exhaustion was puberty-related and rather typical for girls my age. He did notice an abnormally fast heart rate but put this down to nervosity or anxiety’, recalls Inga Drossart who suffered for years from a nearly permanent supraventricular tachycardia before finally seeing a specialist and being correctly diagnosed and treated. Female patients themselves have become so accustomed to hearing such stories of cardiovascular misdiagnosis. A conversation across a dinner table at a social event reveals yet another story of a delayed CVD diagnosis; a friend was re-telling how their primary physician played down symptoms while they were actually experiencing a heart attack; a mother was told her symptoms were down to being post-partum and she was too young to be having symptoms of a heart attack; or a patient was told she was just anxious. Other patients are finding it increasingly hard to control their emotions about misdiagnosis—whether it is anger, frustration, disappointment, or the feeling of being neglected. ‘For heaven’s sake, why is this (still) happening?!’, they want to cry out. Have we accepted these statistics are the ‘norm’? Crucially, the statistics prove the female patient experiences are sadly accurate. But what about the thousands of women who don’t even make it on to a cardiac performance audit? The statistics mark only a protruding ‘tip of the iceberg’ of sex/gender healthcare-related disparities and sadly point to systemic care pathways lacking in nuances and considerations of the female anatomy and the female experience. Unconscious biases (which we are all guilty of) leak onto the floors of the emergency departments and primary physician’s offices. There are two sides to every story. Women themselves delay in seeking care. Furthermore, they may describe symptoms in a manner different to men. Why do women not grasp the urgency to both prevent and act on heart matters? Workstream member Maria Psarra-Parker, who comes from Greece, explains why women may delay seeking care: ‘In many traditions, women still occupy the central role in family life. They may often be juggling an array of roles and carrying the burden of domestic responsibility—leaving little time to consider their own health and well-being needs.’ Ingrid de Laval adds: ‘Women have been conditioned to be “good girls”, not to disturb or make a fuss!’ There are many complex layers, and each needs addressing from public health messaging, health education, physician training, to research funding. Being asked for possible solutions and actions to be taken, workstream member Carolyn Crawford says: ‘Increased knowledge bolsters confidence and increases heart health awareness. Women are less likely to be “fobbed off” or be worried about “bothering” their healthcare provider if they have more information from a trusted source about their condition.’ And Jim Ainslie goes beyond educating only women: ‘To help tackle this and other inequities, we need better education in identifying CVD in women. Educational programmes for doctors, scientists, allied healthcare professionals and ALL in our communities’. A first action the workstream members took was to use International Women’s Day on March 8 to raise awareness via the ESC social media channels. Furthermore, there are plans to develop women-specific heart health checklists that healthcare professionals and women can use to start the conversation. There remains a lot of work to be done, and it is critical that all stakeholders join forces to reduce the disparities that still exist—researchers, healthcare professionals, politicians, and last but not the least people/patients like us, the members of the ESC Patient Forum. Many thanks to all members of the ESC Patient Forum Workstream on CVD in Women who contributed—James Ainslie1, Carolyn Crawford1, Ingrid de Laval1, and Maria Psarra Parker1. All authors declare no conflict of interest for this contribution.

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