Non-cardiac comorbidities in adults with inherited and congenital heart disease: report from a single center experience of more than 800 consecutive patients

Neidenbach, Rhoia; Lummert, Eckart; Vigl, Matthaeus; Zachoval, R.; Fischereder, Michael; Engelhardt, A.; Pujol, C.; Oberhoffer, Renate; Nagdyman, Nicole; Ewert, Peter; Hauser, Michael; Kaemmerer, Harald

doi:10.21037/cdt.2018.03.11

Cited by 46 publications

(43 citation statements)

References 30 publications

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“…Furthermore, non-cardiac comorbidities play major roles in lifelong ACHD care, but until recently, their importance was clearly underestimated. Neidenbach et al found that, out of 821 ACHD, over 95% had relevant non-cardiac comorbidities [9]. This finding was supported by Singh et al, a large contemporary study of ACHD hospitalizations (n = 255,355) from the US National Inpatient Sample Database [10].…”

Section: Introductionmentioning

confidence: 90%

“…However, most CHD patients are not completely cured and require medical follow-up or even subsequent "redo-surgery" [3]. All CHD patients, regardless of severity or type, have a chronic heart condition requiring regular follow-up with CHD cardiologists mindful of potential residua, cardiac sequelae, and comorbidities that may seriously affect the patients' health [9][10][11][12]. The importance of these residual and secondary diseases and the pronounced lifelong need for medical follow-up is illustrated by the significant increase in hospital admissions of ACHD in recent years [13].…”

Section: Introductionmentioning

confidence: 99%

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Facts about the General Medical Care of Adults with Congenital Heart Defects: Experience of a Tertiary Care Center

Seidel

Nebel

Achenbach

et al. 2020

JCM

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Background: Due to the increase in survival rates for congenital heart disease (CHD) in the last decades, over 90% of patients today reach adulthood. Currently, there are more than 300,000 adults with CHD (ACHD) living in Germany. They have an increased need for specialized medical care, since almost all ACHD have chronic heart disease and suffer from specific chronic symptoms, risks, and sequelae. Primary care physicians (PCPs) play a crucial role in referring patients to ACHD specialists or specialized institutions. This cross-sectional study is intended to clarify the real-world care of ACHD from the PCP’s perspective. Methods: This analysis, initiated by the German Heart Centre Munich, was based on a 27-item questionnaire on actual ACHD health care practice in Germany from the PCP’s perspective. Results: In total, 767 questionnaires were considered valid for inclusion. The majority of the PCPs were general practitioners (95.9%), and 84.1% had cared for ACHD during the past year. A majority (69.2%) of the PCPs had cared for patients with simple CHD, while 50.6% and 33.4% had cared for patients with moderate and severe CHD, respectively, in all age groups. PCPs treated almost all typical residual symptoms and sequelae, and advised patients regarding difficult questions, including exercise capacity, pregnancy, genetics, and insurance matters. However, 33.8% of the PCPs did not even know about the existence of certified ACHD specialists or centers. Only 23.9% involved an ACHD-specialized physician in their treatment. In cases of severe cardiac issues, 70.8% of the PCPs referred patients to ACHD-certified centers. Although 52.5% of the PCPs were not sufficiently informed about existing structures, 64.2% rated the current care situation as either “very good” or “good”. Only 26.3% (n = 190) of the responding physicians were aware of patient organizations for ACHD. Conclusions: The present study showed that the majority of PCPs are not informed about the ACHD care structures available in Germany. The need for specialized ACHD follow-up care is largely underestimated, with an urgent need for optimization to reduce morbidity and mortality. For the future, solutions must be developed to integrate PCPs more intensively into the ACHD care network.

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Section: Introductionmentioning

confidence: 90%

Section: Introductionmentioning

confidence: 99%

Facts about the General Medical Care of Adults with Congenital Heart Defects: Experience of a Tertiary Care Center

Seidel

Nebel

Achenbach

et al. 2020

JCM

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“…and more than 90% of them reach adulthood [1]. Yet, the majority of adults with congenital heart disease (ACHD) is chronically ill due to lifelong residua and sequelae of the underlying heart disease [2][3][4] [2,3,4]. However, medical restraints are not the adults' only source of suffering, a sequence of life-altering experiences, such as early trauma, numerous hospitalizations and continuous medical emergencies may seriously impact their mental health status.…”

Section: Introductionmentioning

confidence: 99%

Assessment of the Psychological Situation in Adults with Congenital Heart Disease

Andonian

Beckmann

Ewert

et al. 2020

JCM

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Background: Due to advances in the diagnosis and treatment of congenital heart disease (CHD), the number of adults who are surviving with congenital heart disease (ACHD) is constantly growing. Until recently, the psychological effects of CHD had been widely neglected. Current research provides evidence for an increased risk of emotional distress in ACHD. The concept of illness identity attempts to explain how patients experience and integrate their CHD into their identities. The present study investigated illness identity in relation to clinical parameters and psychological functioning. Psychometric properties of the German version of the Illness Identity Questionnaire (IIQD) were examined. Methods: Self-reported measures on illness identity and psychological functioning (HADS-D) were assessed in a representative sample of 229 ACHD (38 ± 12.5 (18−73) years; 45% female) at the German Heart Center Munich. Descriptive analyses and multiple regression models were conducted. Confirmatory factor analysis was performed to validate the IIQD. Results: The IIQD demonstrated good reliability. The originally-postulated four-factor structure could not be replicated. Anatomic disease complexity and functional status significantly influenced illness identity. Illness identity accounted for unique variances in depression and anxiety: Maladaptive illness identity states (i.e., , engulfment and rejection) were associated with higher emotional distress, whereas adaptive illness (i.e., , acceptance and enrichment) identity states were linked to lower emotional distress. Conclusions: Illness Identity emerged as a predictor of emotional distress in ACHD. Findings raise the possibility that interventions designed to target a patient’s illness identity may improve psychological well-being and cardiac outcomes in ACHD.

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“…In the near future, preventive medicine measures will be of paramount importance for the care of patients with congenital heart defects (CHD) (1)(2)(3).…”

Section: Introductionmentioning

confidence: 99%

Improving medical care and prevention in adults with congenital heart disease—reflections on a global problem—part I: development of congenital cardiology, epidemiology, clinical aspects, heart failure, cardiac arrhythmia

Neidenbach

Niwa

Oto

et al. 2018

Cardiovasc. Diagn. Ther

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Today most patients with congenital heart defects (CHD) survive into adulthood. Unfortunately, despite relevant residua and sequels, follow-up care of adults with congenital heart disease (ACHD) is not performed in specialized and/or certified physicians or centres. Major problems in the long-term course encompass heart failure, cardiac arrhythmias, heart valve disorders, pulmonary vascular disease, infective endocarditis, aortopathy and non-cardiac comorbidities. Many of them manifest themselves differently from acquired heart disease and therapy regimens from general cardiology cannot be transferred directly to CHD. It should be noted that even simple, postoperative heart defects that were until recently considered to be harmless can lead to problems with age, a fact that had not been expected so far. The treatment of ACHD has many special features and requires special expertise. Thereby, it is important that treatment regimens from acquired heart disease are not necessarily transmitted to CHD. While primary care physicians have the important and responsible task to set the course for adequate diagnosis and treatment early and to refer patients to appropriate care in specialized ACHD-facilities, they should actively encourage ACHD to pursue follow-up care in specialized facilities who can provide responsible and advanced advice. This medical update emphasizes the current data on epidemiology, heart failure and cardiac arrhythmia in ACHD.

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Non-cardiac comorbidities in adults with inherited and congenital heart disease: report from a single center experience of more than 800 consecutive patients

Cited by 46 publications

References 30 publications

Facts about the General Medical Care of Adults with Congenital Heart Defects: Experience of a Tertiary Care Center

Facts about the General Medical Care of Adults with Congenital Heart Defects: Experience of a Tertiary Care Center

Assessment of the Psychological Situation in Adults with Congenital Heart Disease

Improving medical care and prevention in adults with congenital heart disease—reflections on a global problem—part I: development of congenital cardiology, epidemiology, clinical aspects, heart failure, cardiac arrhythmia

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