Congenital heart disease patients' and parents' perception of disease-specific knowledge: Health and impairments in everyday life

Helm, P.; Kempert, Sebastian; Körten, Marc-André; Lesch, Wiebke; Specht, Katharina; Bauer, Ulrike

doi:10.1111/chd.12581

Cited by 12 publications

(10 citation statements)

References 20 publications

(43 reference statements)

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“…These factors included a comprehensive (holistic) care (including extra-cardiac problems), enough time for consultation and clear and understandable, comprehensive explanations. The main finding of our study, that communication and a good physician-patient relationship are of central importance to patients, is in line with previous studies in the setting of congenital heart disease as shown by publications by Helm et al and Lesch et al previously [4,22,29]. Interestingly, patients' subjective preferences were found to be heterogeneous on further analysis.…”

Section: Discussionsupporting

confidence: 90%

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Optimizing Care for Adults with Congenital Heart Disease: Results of a Conjoint Analysis Based on a Nationwide Sample of Patients Included in the German National Register

Lammers

Helm

Bauer

et al. 2021

JCM

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(1) Background: Congenital heart disease (CHD) requires lifelong specialized care. Failure to follow up and gaps in care are common in this group and lead to increased morbidity/mortality. We evaluated patients’ perceived needs and expectations regarding specialized care using state-of-the-art statistical and market research techniques based on a nationwide sample of CHD patients. (2) Methods: A random sample of adults with CHD registered in the German National Register for Congenital Heart Defects were invited to answer an adaptive online questionnaire based on the conjoint analysis (CA) technique. CA determines the relative importance of various aspects of health care provision and allows individuals to trade between characteristics, thus recognizing limited resources. (3) Results: 637 patients participated (mean age 33.8 ± 12.6 years; 55.6% female; disease complexity: simple defect 12.6%, moderate complexity 40.3%, complex CHD 40.2%) in the analysis. Patients assigned the highest relative importance to aspects of patient–physician communication, physician qualifications, waiting time, medical care, and medical equipment. Comfort-related aspects such as driving time or hotel aspects of care received much lower scores. We identified four well-defined clusters of patients with differing expectation patterns: (i) time sensitive patients; (ii) excellence seeking patients; (iii) continuity seekers, and (iv) support seeking patients. (4) Conclusions: Adult CHD patients rank effective patient–physician interaction and communication as the most important factors. As we identified significant heterogeneity between CHD patients, centers should cater for individual preferences and integrate individual needs into treatment plans to prevent failure to follow up and ensure patient compliance.

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Section: Discussionsupporting

confidence: 90%

“…Congenital heart disease (CHD) is the most common congenital defect in humans [1,2] and requires lifelong specialized care [3][4][5]. Nowadays, about 90% of CHD patients reach adulthood [3,[6][7][8][9][10].…”

Section: Introductionmentioning

confidence: 99%

Optimizing Care for Adults with Congenital Heart Disease: Results of a Conjoint Analysis Based on a Nationwide Sample of Patients Included in the German National Register

Lammers

Helm

Bauer

et al. 2021

JCM

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“…The reported prevalence of congenital heart disease (CHD) varies between 4 and 10 per 1000 live births [1]. The prognosis of CHD in children has improved greatly in recent years, as advances in congenital heart surgery and congenital cardiology have enabled more than 90% of cases to reach adulthood [2].…”

Section: Introductionmentioning

confidence: 99%

A Case Report of Hepatocellular Carcinoma Derived from Rastelli Procedure-Related Congestive Liver Disease

Sakano

Noda

Kobayashi

et al. 2021

Preprint

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[Background] The prognosis of congenital heart disease in children has improved, but late complications in adulthood are becoming an important problem. One late complication after congenital heart surgery is congestive liver disease, leading to liver cirrhosis and hepatocellular carcinoma (HCC). The Rastelli procedure is one of the surgical methods for transposition of the great arteries, and patients are thought have a low post-surgical risk of congestive hepatopathy by receiving re-intervention for right ventricular outflow tract obstruction.[Case presentation] We present the first case of HCC derived from Rastelli procedure-related congestive liver disease in a 41-year-old male. The patient underwent the Rastelli operation at 2 years of age and right ventricular outflow tract reconstruction at 10 and 35 years of age due to right ventricular outflow tract obstruction. At 41 years of age, a hepatic tumor was detected by computed tomography. Abdominal enhancing computed tomography revealed a partially hypervascular tumor in segment 2 in early phase and wash-out in late phase. The patient was diagnosed with HCC and underwent left lateral segmentectomy of the liver, splenectomy, and partial gastrectomy. The patient was discharged on the 28th postoperative day without postoperative complications. The resected tumor pathologically revealed moderately differentiated HCC and F3 liver fibrosis.[Conclusions] In the management of patients after the Rastelli operation, surveillance for congestive liver disease and HCC development is important, even if the patients have undergone right ventricular outflow tract reconstruction.

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“…9 Patient's age and CHD severity and psychosocial support seem to be related to selfassessed state of health and impairments in everyday life. 10 Most children with CHD are diagnosed in the perinatal period or in early infancy and families must concurrently deal with the stress of a normative transition and the stress of diagnosis of a chronic illness. Caregiving demands are very high, especially in the early stages of illness.…”

Section: Introductionmentioning

confidence: 99%

Burden of Care Among Mothers Having Children with Congenital Heart Diseases

Sharma

Mishra

2020

J. Nepal Paedtr. Soc.

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Introduction: Congenital Heart Disease (CHD) is a problem with structure and function of the heart that is present at birth. Children with CHD require special care, treatment and follow up for a number of common conditions which may be quite straining to the care givers. The objective of the study was to find out the burden of care among mothers having children with CHD. Methods: This descriptive cross-sectional study was carried out in a cardiac centre of Nepal. A total of 95 mothers having children with CHD attending outpatient department of our institute were selected as the sample for the study using non-probability purposive sampling technique. A semi structured interview questionnaire consisting of the Modified Caregiver Strain Index was used to assess the burden of care among mothers having children with CHD. Frequency and percent were used to describe the variables and chi- square test at 0.05 significance level was used to analyse associations. Results: Most (77.9%) of the mothers were regularly strained to find that their children’s health condition was deteriorating due to CHD. Nearly half (44.2%) of the mothers always had financial constrain while giving care to the child, nearly half (40%) of the mothers had done emotional adjustments to take care of their children with CHD, another two-fifths (28.4%) of the mothers sometimes had disturbed sleep and almost half (46.3%) of the mothers were always upset due to some behaviour of their child with CHD. Half (50.5%) of the mothers had high level of burden of care. Statistically significant association were found between age of the mother and level of burden of care (p value = 0.05). Similarly, the type of family (p value = 0.005), age of the children (p value = 0.000) and type of CHD (p value = 0.002) were significantly associated with the level of burden of care among the mothers. Conclusion: The study concluded that mothers tend to feel less burden of care as the child grows older, mothers having children with cyanotic heart disease tend to experience more burden of care. Mothers of less than thirty years of age and living in a joint family also experience more burden of care.

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Congenital heart disease patients' and parents' perception of disease-specific knowledge: Health and impairments in everyday life

Cited by 12 publications

References 20 publications

Optimizing Care for Adults with Congenital Heart Disease: Results of a Conjoint Analysis Based on a Nationwide Sample of Patients Included in the German National Register

Optimizing Care for Adults with Congenital Heart Disease: Results of a Conjoint Analysis Based on a Nationwide Sample of Patients Included in the German National Register

A Case Report of Hepatocellular Carcinoma Derived from Rastelli Procedure-Related Congestive Liver Disease

Burden of Care Among Mothers Having Children with Congenital Heart Diseases

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