The impact of actual and perceived disease severity on pre-operative psychological well-being and illness behaviour in adult congenital heart disease patients

2013 ◽  
Vol 24 (2) ◽  
pp. 275-282 ◽  
Author(s):  
Edward Callus ◽  
Elisabeth M. W. J. Utens ◽  
Emilia Quadri ◽  
Cristian Ricci ◽  
Mario Carminati ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Disease Severity ◽  
Cardiac Disease ◽  
Congenital Heart ◽  
Well Being ◽  
Illness Behavior ◽  
Psychological State ◽  
Illness Behaviour ◽  
Psychological Well Being

AbstractObjectives: The purpose of this study was to investigate whether the objective medical parameters related to congenital heart disease and patients’ ratings of cardiac disease severity were related to psychological well-being and illness behaviour during the pre-operative period.Methods: A total of 143 patients (63 male patients; 16–73 years old) with congenital heart disease evaluated the severity of their cardiac condition using a numerical rating scale ranging from 0, indicating the least severe condition, to 100, indicating the most severe condition. Psychological well-being was assessed using the Psychological General Well-Being Index (total score ≤60 indicating severe distress) and illness behaviour using the Illness Behavior Questionnaire.Results: Pre-operative psychological well-being was not related to the objective medical parameters reflecting cardiac disease severity. In contrast, total psychological well-being scores correlated significantly with patients’ subjective ratings of disease severity (p < 0.001). When compared with the reference values from the Italian population, the mean scores of the patients on psychological well-being were similar. As regards the Illness Behavior Questionnaire, the scores on denial were higher and those on hypochondria were lower compared with other hospitalised patients.Conclusions: This study shows that the perception of cardiac disease severity, and not the medical parameters in congenital heart disease, is related to the patients’ pre-operative psychological state. Thus, more importance needs to be given to assessing the patients’ pre-operative perception and psychological state independently of cardiac severity. Targeted interventions with regard to the cardiac condition are recommended.

Psychological Well-being in Adult Patients Suffering From Congenital Heart Disease

2021 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Rodrigo López Barreda ◽  
Margarita Bernales ◽  
Alonso Guerrero ◽  
Juan Cristóbal de la Cuadra ◽  
Fernando Baraona ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Well Being ◽  
Adult Patients ◽  
Psychological Well Being

Psychosocial well-being and quality of life in siblings of children with congenital heart disease: A systematic review

2021 ◽  
pp. 136749352110129
Author(s):  
Alice S Schamong ◽  
Hannah Liebermann-Jordanidis ◽  
Konrad Brockmeier ◽  
Elisabeth Sticker ◽  
Elke Kalbe
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Associated Factors ◽  
Congenital Heart ◽  
Negative Impact ◽  
Well Being

Congenital heart disease (CHD) is a major global health problem. Until recently, the siblings of this group did not receive much attention. This review, conducted from November 2019 to October 2020, aims to summarize knowledge about psychosocial well-being and quality of life (QoL), associated factors, and interventions for siblings of children with CHD. Systematic searches were conducted in PubMed, PsycINFO, PsycARTICLES, Web of Science via EBSCOhost, and CENTRAL. Twelve articles were included. Results showed that psychosocial well-being was impaired in 14% to 40% of siblings. Negative impact of illness was highest for CHD siblings compared to siblings of children with cancer, cystic fibrosis, or diabetes. QoL was impaired in up to one-third. Siblings of children with CHD and cancer rated their QoL lower than those of siblings of children with cystic fibrosis or type-1 diabetes. Associated factors were sibling age, gender, socioeconomic status, miscarriage, previous sibling death, visibility of illness, and severity of condition. Only one of two interventions focused on siblings of CHD children. Although data are scarce and inhomogeneous, it indicates that siblings of CHD children suffer from lower psychosocial well-being and QoL than siblings of children with other chronic conditions. Interventions to improve their situation should be developed.

Endocrinal complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease

2008 ◽  
Vol 18 (S2) ◽  
pp. 256-264 ◽  
Author(s):  
Heather Dickerson ◽  
David S. Cooper ◽  
Paul A. Checchia ◽  
David P. Nelson
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Cardiac Disease ◽  
Congenital Heart ◽  
Healthcare Intervention ◽  
Time Interval ◽  
Quality Reporting ◽  
Cardiac Malformations ◽  
Comprehensive List ◽  
Congenital Cardiac Disease

AbstractA complication is an event or occurrence that is associated with a disease or a healthcare intervention, is a departure from the desired course of events, and may cause, or be associated with, suboptimal outcome. A complication does not necessarily represent a breech in the standard of care that constitutes medical negligence or medical malpractice. An operative or procedural complication is any complication, regardless of cause, occurring (1) within 30 days after surgery or intervention in or out of the hospital, or (2) after 30 days during the same hospitalization subsequent to the operation or intervention. Operative and procedural complications include both intraoperative/intraprocedural complications and postoperative/postprocedural complications in this time interval.The MultiSocietal Database Committee for Pediatric and Congenital Heart Disease has set forth a comprehensive list of complications associated with the treatment of patients with congenital cardiac disease, related to cardiac, pulmonary, renal, haematological, infectious, neurological, gastrointestinal, and endocrinal systems, as well as those related to the management of anaesthesia and perfusion, and the transplantation of thoracic organs. The objective of this manuscript is to examine the definitions of operative morbidity as they relate specifically to the endocrine system. These specific definitions and terms will be used to track morbidity associated with surgical and transcatheter interventions and other forms of therapy in a common language across many separate databases.As surgical survival in children with congenital cardiac disease has improved in recent years, focus has necessarily shifted to reducing the morbidity of congenital cardiac malformations and their treatment. A comprehensive list of endocrinal complications is presented. This list is a component of a systems-based compendium of complications that will standardize terminology and thereby allow the study and quantification of morbidity in patients with congenital cardiac malformations. Clinicians caring for patients with congenital cardiac disease will be able to use this list for databases, initiatives to improve quality, reporting of complications, and comparing strategies of treatment.

scholarly journals Predicting 15-Year Mortality in Adults With Congenital Heart Disease Using Disease Severity and Functional Indices

2019 ◽  
Vol 35 (7) ◽  
pp. 907-913 ◽  
Author(s):  
Fouke Ombelet ◽  
Eva Goossens ◽  
Silke Apers ◽  
Werner Budts ◽  
Marc Gewillig ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Disease Severity ◽  
Congenital Heart ◽  
Functional Indices

scholarly journals Struggling and Overcoming Daily Life Barriers Among Children With Congenital Heart Disease and Their Parents in the West Bank, Palestine

2018 ◽  
Vol 24 (4) ◽  
pp. 585-611 ◽  
Author(s):  
Kawther Elissa ◽  
Carina Sparud-Lundin ◽  
Åsa B. Axelsson ◽  
Salam Khatib ◽  
Ewa-Lena Bratt
Keyword(s):  
Health Care ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Health Care Providers ◽  
Congenital Heart ◽  
Daily Life ◽  
West Bank ◽  
Well Being ◽  
Negative Consequences ◽  
Care Providers

Advances in early diagnosis, treatment, and postoperative care have resulted in increased survival rates among children with congenital heart disease (CHD). Research focus has shifted from survival to long-term follow-up, well-being, daily life experiences, and psychosocial consequences. This study explored the everyday experiences of children with CHD and of their parents living in the Palestinian West Bank. Interviews with nine children aged 8 to 18 years with CHD and nine parents were analyzed using content analysis. The overall theme that emerged was facing and managing challenges, consisting of four themes: sociocultural burden and finding comfort, physical and external limitations, self-perception and concerns about not standing out, and limitations in access to health care due to the political situation. To provide optimum care for children with CHD and their parents, health care providers and policy makers must understand the negative consequences associated with sociocultural conditions and beliefs about chronic illness.

scholarly journals Quality of life of adult congenital heart disease patients: a systematic review of the literature

2013 ◽  
Vol 23 (4) ◽  
pp. 473-485 ◽  
Author(s):  
Theodora Fteropoulli ◽  
Jan Stygall ◽  
Shay Cullen ◽  
John Deanfield ◽  
Stanton P. Newman
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Disease Severity ◽  
Congenital Heart ◽  
Adult Congenital Heart Disease ◽  
Adult Population ◽  
Targeted Interventions ◽  
Adult Congenital

AbstractAimsThis review explores the quality of life of adult congenital heart disease patients and the relationship between disease severity and quality of life.MethodsWe searched seven electronic databases and the bibliography of articles. The 31 selected studies fulfilled the following criteria: adult population; quantitative; assessment of quality of life and/or impact of disease severity on quality of life using validated measures; English language. Data extraction forms were used to summarise the results.ResultsThere are evident methodological limitations within the reviewed studies such as heterogeneous populations, designs, and quality of life conceptualisations and measurements. Despite these problems, findings suggest that the quality of life of adult congenital heart disease patients is compromised in the physical domain compared with their healthy counterparts, whereas no differences were found in relation to the psychosocial and environmental/occupational domain. Some severity variables appear to be significant correlates of quality of life and could be considered in a future standardised classification of disease severity.ConclusionThe methodological limitations of past research in relation to the definition and measurement of quality of life, the study designs, and disease severity classifications need to be addressed in future studies in order to provide robust evidence and valid conclusions in this area of study. This will enable the development of targeted interventions for the improvement of quality of life in the adult population of congenital heart disease patients.

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