ObjectiveThis study explored the lived experiences of women with congenital heart disease (CHD) during pregnancy and early motherhood.DesignQualitative study using semistructured interviews. Data were analysed according to interpretative phenomenological analysis.SettingSan Donato Milanese, Italy.Participants12 adult women during pregnancy or early motherhood.ResultsThree main themes emerged from the analysis that were labelled as follows: ‘Being a woman with CHD’; ‘Being a mother with CHD’; and ‘Don’t be alone’. Mothers described both positive and negative feelings about their pregnancies and transitions from childless women to mothers with CHD. They needed supportive care to improve the management of their health during pregnancy and early motherhood.ConclusionThis study explored the lived experiences of women with CHD during pregnancy and early motherhood. The emerged themes represent an initial framework for implementing theory-grounded educational and supportive strategies that improve self-care, engagement and quality of life for women with CHD. Furthermore, the study’s results provide guidance for operationalising the described experiences into items and domains for future cross-national surveys.

Aims The aim of this study was to assess the impact of a transition clinic model on adolescent congenital heart disease (CHD) patients’ health perception outcomes. The transition clinic model consists of multidisciplinary standardized interventions to educate and support CHD patients and represents a key element in the adequate delivery of care to these individuals during their transition from childhood to adulthood. Currently, empirical data regarding the impact of transition clinic models on the improvement of health perceptions in CHD adolescent patients are lacking. Methods A quasi-experimental design was employed. Quality of life, satisfaction, health perceptions and knowledge were assessed at the time of enrolment (T0) and a year after enrolment (T1), respectively. During the follow-up period, the patients enrolled (aged 11–18 years) were involved in the CHD-specific transition clinic model (CHD-TC). Results A sample of 224 CHD adolescents was enrolled (60.7% boys; mean age: 14.84 ± 1.78 years). According to Warnes’ classification, 22% of patients had simple heart defect, 56% showed moderate complexity and 22% demonstrated severe complexity. The overall results suggested a good impact of the CHD-TC on adolescents’ outcomes, detailing in T1 the occurrence of a reduction of pain (P < 0.001) and anxiety (P < 0.001) and an improvement of knowledge (P < 0.001), life satisfaction (P < 0.001), perception of health status (P < 0.001) and quality of life (P < 0.001). Conclusion The CHD-TC seems to provide high-quality care to the patient by way of a multidisciplinary team. The results of the present study are encouraging and confirm the need to create multidisciplinary standardized interventions in order to educate and support the delivery of care for CHD adolescents and their families.

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ObjectivesTo provide the first epidemiological lifestyle descriptions of the Italian grown-up/adult congenital heart disease (GUCH/ACHD) population by identifying the determinants of poor perceived health status.DesignCross-sectional pan-national survey.SettingItalian GUCH/ACHD patients who were members of the Italian Association of GUCH/ACHD.Primary and secondary outcome measuresTo discuss these lifestyle descriptions through an ad hoc developed questionnaire and health perceptions (ie, mental and physical health perception) through a short form health survey (SF-12).Results629 patients included; many investigated GUCH/ACHD lifestyles were determined similar to those of the general population — with the exception of the smoking habits, which were lower. The odds of the occurrence of inadequate physical health perceptions increased by more than two times in patients undergoing antiarrhythmic therapies (OR adjusted=2.045; 95% CI=1.201 to 3.479; p=0.008; n=629), more than 1.5 times in patients taking oral anticoagulants (OR adjusted=1.638; 95% CI=1.038 to 2.585; p=0.034; n=629) and roughly 1.7 times in patients treated with antiplatelets (OR adjusted=1.743; 95% CI=1.024 to 2.966; p=0.041; n=629). The odds of the occurrence of inadequate mental health perceptions increased by 1.7% for every year that the patients aged (OR adjusted=1.017; 95% CI=1.002 to 1.032; p=0.025; n=629).ConclusionParticular attention should be paid to these ageing patients’ increasing psychological needs, and additional research is needed to identify associations between their lifestyles and clinical outcomes.

The worldwide response to the current COVID-19 pandemic has been focused on how to prevent the disease and to protect the high-risk patient from a potentially lethal infection. Several consensus and guidelines articles have been published dealing with the cardiac patient with systemic hypertension, heart transplant or heart failure. Very little is known about the patients, both in the pediatric as well as in the adult age, with congenital heart disease. The peculiar physiology of the heart with a native, repaired or palliated congenital heart defect deserves a specialized care. Hereby we describe the early recommendations issued by the Italian Society of Pediatric Cardiology and Congenital Heart Disease and how the network of the congenital cardiac institutions in Italy reacted to the threat of potential wide spread of the infection among this fragile kind of patient.