scholarly journals Psychological well-being in adults with congenital heart disease: Testing the predictive value of illness identity

2021 ◽  
Vol 5 (2) ◽  
pp. 45
Author(s):  
Caroline Andonian ◽  
Sebastian Freilinger ◽  
Harald Kaemmerer ◽  
Jurgen Beckmann
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Predictive Value ◽  
Congenital Heart ◽  
Well Being ◽  
Psychological Well Being ◽  
Illness Identity ◽  
Disease Testing

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

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.

scholarly journals Assessment of the Psychological Situation in Adults with Congenital Heart Disease

2020 ◽  
Vol 9 (3) ◽  
pp. 779 ◽  
Author(s):  
Caroline Andonian ◽  
Jürgen Beckmann ◽  
Peter Ewert ◽  
Sebastian Freilinger ◽  
Harald Kaemmerer ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Emotional Distress ◽  
Psychological Functioning ◽  
Congenital Heart ◽  
Well Being ◽  
Good Reliability ◽  
Increased Risk ◽  
Illness Identity ◽  
Patients Experience

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.

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.

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.

Texas Pulse Oximetry Project: A Multicenter Educational and Quality Improvement Project for Implementation of Critical Congenital Heart Disease Screening Using Pulse Oximetry

2017 ◽  
Vol 34 (09) ◽  
pp. 856-860 ◽  
Author(s):  
Alice Gong ◽  
Judith Livingston ◽  
Liza Creel ◽  
Elena Ocampo ◽  
Tiffany McKee-Garrett ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Quality Improvement ◽  
Heart Disease ◽  
Pulse Oximetry ◽  
Predictive Value ◽  
Educational Program ◽  
Congenital Heart ◽  
Critical Congenital Heart Disease ◽  
Improvement Project ◽  
Nurses Knowledge

Objective Critical congenital heart disease (CCHD) is a leading cause of death in infants. Newborn screening (NBS) by pulse oximetry allows early identification of CCHD in asymptomatic newborns. To improve readiness of hospital neonatal birthing facilities for mandatory screening in Texas, an educational and quality improvement (QI) project was piloted to identify an implementation strategy for CCHD NBS in a range of birthing hospitals. Study Design Thirteen Texas hospitals implemented standardized CCHD screening by pulse oximetry. An educational program was devised and a tool kit was created to facilitate education and implementation. Newborn nursery nurses' knowledge was assessed using a pre- and posttest instrument. Results The nurses' knowledge assessment improved from 71 to 92.5% (p < 0.0001). Of 11,322 asymptomatic newborns screened after 24 hours of age, 11 had a positive screen, with 1 confirmed case of CCHD. Pulse oximetry CCHD NBS had sensitivity of 100%, specificity of 99.91%, false-positive rate of 0.088%, positive predictive value of 9.09%, and negative predictive value of 100%. Conclusion Our educational program, including a tool kit, QI processes, and standardized pulse oximetry CCHD NBS, is applicable for a range of hospital birthing facilities and may facilitate wide-scale implementation, thereby improving newborn health.

scholarly journals Prevalence of Child Maltreatment in Adults With Congenital Heart Disease and Its Relationship With Psychological Well-Being, Health Behavior, and Current Cardiac Function

2021 ◽  
Vol 12 ◽  
Author(s):  
Phileas J. Proskynitopoulos ◽  
Ivo Heitland ◽  
Alexander Glahn ◽  
Johann Bauersachs ◽  
Mechthild Westhoff-Bleck ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Disease ◽  
Sexual Abuse ◽  
Heart Disease ◽  
Child Maltreatment ◽  
Cardiac Function ◽  
Emotional Abuse ◽  
Congenital Heart ◽  
Well Being

Background: The prevalence of child maltreatment in adults with congenital heart disease (ACHD) has not been assessed so far. Child maltreatment is a major risk factor for unfavorable behavioral, mental, and physical health outcomes and has been associated with decreased quality of life. Given the increased survival time of ACHD, it is essential to assess factors that may worsen the quality of life and interact with classical cardiovascular risk factors and mental well-being.Methods: In a cross-sectional study, 196 ACHD (mean age 35.21 ± 11.24 y, 44,4% female, 55.6% male) completed a thorough psychiatric and cardiac evaluation. Child maltreatment was assessed using the Childhood Trauma Questionnaire (CTQ) and rates were compared to already existing data from the German general population. Further psychological measurements included the WHO Quality of Life Questionnaire, Hospital Anxiety and Depression Scale (HADS) and assessment of lifestyle factors (exercise, smoking, alcohol consumption, body mass index). To identify a relationship between current cardiac function and child maltreatment, we used logistic regression.Results: ACHD reported significantly higher rates of emotional neglect and emotional abuse and sexual abuse and lower rates of physical neglect when compared to the general German population. In addition, total CTQ-scores, emotional abuse, emotional neglect, physical abuse, and sexual abuse correlated with symptoms of depression, anxiety, and negatively correlated with QoL. Furthermore, CTQ scores contributed significantly in predicting higher New York Heart Association (NYHA) scores (p = 0.009).Conclusion: Child maltreatment is more common in ACHD and associated with decreased quality of life and depression and anxiety. Furthermore, we found evidence that self-reported child maltreatment is associated with decreased cardiac function. Given the longer survival time of patients with ACHD, identifying factors that may negatively influence the disease course is essential. The negative consequences of child maltreatment may be the subject of psychosocial interventions that have demonstrated efficacy in treating posttraumatic stress disorders.

Abstract 191: Identification of Adults With Congenital Heart Disease From Administrative Data

2017 ◽  
Vol 10 (suppl_3) ◽  
Author(s):  
Jill M Steiner ◽  
James N Kirkpatrick ◽  
Susan R Heckbert ◽  
J R Curtis
Keyword(s):  
Myocardial Infarction ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Positive Predictive Value ◽  
End Of Life ◽  
Administrative Data ◽  
Predictive Value ◽  
Congenital Heart ◽  
Eisenmenger Syndrome ◽  
Great Complexity

Introduction: With improved management, there are now more adults with congenital heart disease (ACHD) than children. However, long-term survival with moderate or severe ACHD remains limited, and there is relatively sparse literature on the intensity or quality of end-of-life care for these patients. The goal of this analysis is to examine the accuracy of administrative data for identifying patients who died with ACHD to facilitate study of care provided near the end of life. Methods: We created a list of ICD-9 and ICD-10 codes representing ACHD of moderate or great complexity. We performed a search for these codes in the electronic health record (EHR) of adults who received care 2010-2016 within our healthcare system. We used state death records to identify which of these patients died during the same timeframe. Manual EHR review was completed to evaluate performance of this search strategy. Identified patients were also compared to a list of patients seen in our ACHD clinic and known to have died during 2010-2016. Results: Using ICD data, 121 patients were identified, of which 66 actually had the moderate or greater complexity ACHD conditions by EHR review (positive predictive value, 0.55; 95% confidence interval 0.45, 0.63). EHR review confirmed 12 patients with Eisenmenger Syndrome, for which there is no specific ICD code. “Cyanosis+other” did not identify any of these, “VSD+other” (ventricular septal defect) identified 6, and there were 6 whose only ACHD code was VSD. Of the remaining 55 patients, 24 had ACHD not on the targeted list, largely due to coding error. In addition, despite being coded as having ACHD, 31 patients had no identified ACHD on EHR review. These misidentifications were attributed to coding error for 15 patients. Another 11 patients (35%) had acquired VSD due to myocardial infarction or endocarditis, for which there is no separate ICD code. Codes with the highest degree of error, incorrect more than 50% of the time, were those for congenitally corrected transposition, endocardial cushion defect, and hypoplastic left heart syndrome. The list of known deceased clinic patients included 21 with ACHD of interest. Only 1 of these was not identified by the ICD search, yielding a sensitivity for our list of ICD codes in this small sample of 0.95 (0.77,0.99). Conclusion: Use of administrative data to identify patients with ACHD of moderate or great complexity who have died had good sensitivity but suboptimal positive predictive value. Strategies to improve accuracy can be employed. Excluding patients who have codes for myocardial infarction or endocarditis in addition to VSD and using “VSD+other” as an additional proxy for Eisenmenger Syndrome are two examples. Administrative data is not ideal for identification of patients with ACHD of moderate or great complexity who have died, and manual EHR review is necessary to confirm these diagnoses.

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