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

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.

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

Frontiers in Psychiatry ◽

10.3389/fpsyt.2021.686169 ◽

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.

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Quality of life of patients with congenital heart diseases

Cardiology in the Young ◽

10.1017/s1047951111000576 ◽

2011 ◽

Vol 21 (6) ◽

pp. 670-676 ◽

Cited By ~ 26

Author(s):

Ana M. Silva ◽

Cláudia Vaz ◽

Maria E. G. Areias ◽

Daniela Vieira ◽

Cidália Proença ◽

...

Keyword(s):

Quality Of Life ◽

Social Support ◽

Congenital Heart Disease ◽

Heart Disease ◽

Congenital Heart ◽

Negative Impact ◽

Heart Diseases ◽

Emotional Adjustment ◽

Perception Of Quality

AbstractObjectivesTo assess the perception of the quality of life of adolescents and young adults with congenital heart disease and to examine the variables that have a negative impact on it and that add a resilience effect.MethodsA total of 22 male and 18 female patients, aged 12–26 years, of whom 27 were admitted to surgery and 13 were not, participated in this study. All patients had complete medical records and were interviewed once; demographic and clinical data were collected, and patients filled a questionnaire on quality of life, the WHOQOL-BREF, and underwent an interview on social support, educational style, self-image, functional limitations, and emotional adjustment.Results/ConclusionsOur patients showed a better perception of quality of life than did the general population, on the basis of psychological, social relationship and environment scales. Older patients hold a better perception of quality of life on the psychological scale. Cyanosis did not show any significant impact over perception of quality of life decay; however, the number of surgical procedures and the persistence of moderate-to-severe residual injuries had considerable detrimental effect. Social support had an impact on increasing resilience, promoting adjustment to illness. Several factors may play a role in adjustment to congenital heart disease, either improving the perception of quality of life or worsening it. We may conclude that some buffer variables on congenital heart disease may play roles in increasing the perception of quality of life of patients during their lifetime, social support probably explaining why the perception of quality of life is better than in the normal population. The number of surgeries and the moderate-to-severe residual injuries, however, reverted that effect.

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Exploiting Biomedical Sensors for a Home Monitoring System for Paediatric Patients with Congenital Heart Disease

Technologies ◽

10.3390/technologies9030056 ◽

2021 ◽

Vol 9 (3) ◽

pp. 56

Author(s):

Massimiliano Donati ◽

Silvia Panicacci ◽

Alessio Ruiu ◽

Stefano Dalmiani ◽

Pierluigi Festa ◽

...

Keyword(s):

Quality Of Life ◽

Congenital Heart Disease ◽

Heart Disease ◽

Congenital Heart ◽

Home Monitoring ◽

Well Being ◽

Self Administration ◽

Biomedical Sensors ◽

Study Results

Congenital heart disease, the most frequent malformation at birth, is usually not fatal but leads to multiple hospitalisations and outpatient visits, with negative impact on the quality of life and psychological profile not only of children but also of their families. In this paper, we describe the entire architecture of a system for remotely monitoring paediatric/neonatal patients with congenital heart disease, with the final aim of improving quality of life of the whole family and reducing hospital admissions. The interesting vital parameters for the disease are ECG, heart rate, oxygen saturation, body temperature and body weight. They are collected at home using some biomedical sensors specifically selected and calibrated for the paediatric field. These data are then sent to the smart hub, which proceeds with the synchronisation to the remote e-Health care center. Here, the doctors can log and evaluate the patient’s parameters. Preliminary results underline the sensor suitability for children and infants and good usability and data management of the smart-hub technology (E@syCare). In the clinical trial, some patients from the U.O.C. Paediatric and Adult Congenital Cardiology- Monasterio Foundation are enrolled. They receive a home monitoring kit according to the group they belong to. The trial aims to evaluate the effects of the system on quality of life. Psychological data are collected through questionnaires filled in by parents/caregivers in self-administration via the gateway at the beginning and at the end of the study. Results highlight an overall improvement in well-being and sleep quality, with a consequent reduction in anxious and stressful situations during daily life thanks to telemonitoring. At the same time, users reported a good level of usability, ease of data transmission and management of the devices.

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Health-related quality of life in adolescents with congenital heart disease

Cardiology in the Young ◽

10.1017/s1047951114000304 ◽

2014 ◽

Vol 25 (3) ◽

pp. 526-532 ◽

Cited By ~ 6

Author(s):

Juliana Bertoletti ◽

Giovana C. Marx ◽

Sérgio P. Hattge ◽

Lúcia C. Pellanda

Keyword(s):

Quality Of Life ◽

Congenital Heart Disease ◽

Heart Disease ◽

Congenital Heart ◽

Clinical Symptoms ◽

Well Being ◽

Health Related Quality ◽

Related Quality ◽

Health Related

AbstractPurpose: This study aims to evaluate the health-related quality of life of adolescents with congenital heart disease, describing health-related quality of life according to the diagnosis and severity of congenital heart disease, identified by variables such as the presence of symptoms, surgical interventions, use of medication, and residual lesion. Methods: A cross-sectional study was conducted on 203 adolescents with congenital heart disease attended at the Pediatric Cardiology ambulatory of a reference hospital in Brazil. The Brazilian version of the questionnaire KIDSCREEN-27 was used for the assessment of health-related quality of life. Information related to the congenital heart disease diagnosis and clinical variables were collected from the medical records of the patients. Results: There was no statistically significant difference between acyanotic and cyanotic groups, as well as for the different diagnosis of congenital heart disease. A trend for better health-related quality of life in the dimension of Psychological Well-Being (p=0.054) was found in the groups with surgical intervention and use of medication. Adolescents that referred a good general health presented significantly better results in all dimensions of health-related quality of life, except for Autonomy and Parent Relation, than those who presented clinical symptoms (p<0.05). Conclusions: Type of congenital heart disease and initial diagnosis did not seem to affect the perception of health-related quality of life, corroborating findings of several studies. Surgical interventions and the use of medication can improve previous clinical status, and therefore it seems to be beneficial in terms of Psychological Well-Being. The presence of clinical symptoms was the variable that caused the largest impact on the perception of health-related quality of life, possibly because of the impairment they bring to the daily lives of these patients.

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