Ageing and age-related issues in congenital heart disease: a new niche in treatment, care, and research

Congenital heart disease (CHD) is defined as ‘a gross structural abnormality of the heart and/or intra-thoracic great vessels that is actually or potentially of functional significance’.1 CHD occurs in almost 1 in 100 newborn babies globally.2 Whereas five decades ago, the life expectancy was rather limited; nowadays, 90% of children with CHD can reach adulthood.3 This demonstrates the successes of CHD medical treatment which includes congenital cardiac surgery and catheter interventions. The increased longevity, however, poses new challenges to healthcare and healthcare professionals. We need to better understand the ageing process and the development of age-related problems in people with CHD. The first empirical data showed that older persons with CHD constitute a specific group of individuals with high morbidity, healthcare utilization, and mortality.4–6 There are also indications of accelerated ageing in people with CHD. Indeed, epidemiological and clinical studies found that age-related morbidities, such as coronary heart disease, heart failure, stroke, erectile dysfunction, diabetes, dementia, or cancer, occur more often and at an earlier age in people with CHD than in the general population.7 This accelerated ageing is believed to be a result of chronic, systemic inflammation, because patients with CHD are found to have an activated inflammatory response,8 especially those with cyanotic CHD9 or after cardiac surgery.10 In this respect, the concept of ‘inflamm-ageing’ is proposed, which is the impact of imbalance of inflammation homeostasis on ageing.11 This inflamm-ageing is likely the basis for an increasing disparity between the chronological (i.e. the number of years since birth) and biological age (i.e. cellular integrity) of people with CHD compared with non-afflicted individuals (Central illustration). Inflammation, ageing, and frailty in congenital heart disease (CHD). Ageing is associated with functional consequences, such as patients becoming frail. Frailty is a decline in functional reserve, resistance and resilience of multiple organ systems. Frailty leads to accelerated functional decline and adverse health outcomes. Although frailty in CHD has not been comprehensively investigated, preliminary data on a small sample of adults with CHD aged 40 years or older showed that 41.8% were pre-frail (at risk for frailty because patients fulfil some, but not all, frailty criteria) and 8.9% were frail.7 In the age cohorts of 50–59 and 60+ years, frailty was observed in 10 and 21.7%, respectively.7 The relatively high proportion of pre-frail and frail statuses in this sample of middle-aged and ‘young-old’ patients illustrates the repercussions of accelerated ageing on patients’ functioning. There is a potential link between inflammation, accelerated ageing, and frailty in CHD (see Central illustration) but it has not been empirically investigated yet. The AccelerAGE project (https://clinicaltrials.gov/ct2/show/NCT05667870) is aiming to shed light on this new niche in CHD research. In the current issue of the European Journal of Cardiovascular Nursing, results of an international study on patient-reported outcomes (PROs) in different age groups of adults with CHD were published.12 This study is part of the large APPROACH-IS project13,14 and scrutinized PROs in older patients and compared them with younger age cohorts. The main focus was on physical and mental health status, psychological distress, and quality of life. Adjusted for demographic and medical characteristics, patients aged ≥60 years had a lower physical health status, although fewer anxiety symptoms and a better mental health status compared with patients aged 40–59 and 18–39 years. Additionally, older patients reported higher life satisfaction than patients aged 40–49 years.12 Despite their better emotional health, the observed lower physical health status may not be minimalized. The experienced limitations not only could be caused by sarcopenia defined as the age-associated loss of skeletal muscle mass and function, but can also be linked with frailty.12 As a consequence of the physical decline, older CHD patients will have a higher morbidity, healthcare utilization, and mortality.4–6 This empirical study is accompanied by a ‘Patient Perspective’, which is a relatively novel section in the European Journal of Cardiovascular Nursing.15 In ‘Patient Perspectives’, a patient reflects on research findings described in a paper, or they give additional insights into what this means for patients and families. The accompanied Patient Perspective has been written by Ms Shelagh Ross, an active patient advocate in Canada living with CHD. She describes that living with CHD not only comes with a heavy physical and psychological burden, but also has a silver lining: older patients, similar to the general population, experience greater life satisfaction, and reduced anxiety. However, in her opinion, the study failed to capture the essential experience of simply being alive against all expectations. Older CHD patients are surprised and grateful to still be here which may contribute to their better mental health status.15 Additionally, living with CHD results in them deciding to celebrate and enjoy the little things in life, which also adds to a higher life satisfaction. This has been confirmed in prior research on the relationship between sense of coherence and quality of life in people with CHD.16,17 On the other hand, it also could be possible that the disease sets their life satisfaction bar so low, that small accomplishments are enough. Lastly, she stated that it would be possible that they just learned to settle.15 This last argument is also proposed as a possible explanation in the APPROACH-IS study.12 In conclusion, due to the better life expectancy of patients with CHD, the first generation of older and even geriatric patients is arising. Unfortunately, recent studies described that age-related morbidities occur more often and at an earlier age in people with CHD than in the general population.7 This accelerated ageing is an emerging problem with imminent consequences. Therefore, research is needed to gain insight into the (accelerated) ageing process and the concept of inflamm-ageing. Such studies will help us to provide better care and treatment for the ageing CHD population. The research letter on the APPROACH-IS study and the Patient Perspective published in this issue of the Journal contribute to the body of knowledge because it provides relevant empirical evidence, further supported by a patient’s lived experiences. This work was supported by Research Foundation Flanders (grant number G072022N to P.M.)

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