Quality of life in Arab children with congenital heart disease
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ABSTRACT:
SUBMITTER: Dardas L
PROVIDER: S-EPMC10796050 | biostudies-literature | 2024 Jan
REPOSITORIES: biostudies-literature
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Project description:ObjectiveTo compare patient-reported, health-related quality of life (QoL) for children with serious congenital heart defects (CHDs) and unaffected classmates and to investigate the demographic and clinical factors influencing QoL.DesignRetrospective cohort study.SettingUK National Health Service.PatientsUK-wide cohort of children with serious CHDs aged 10-14 years requiring cardiac intervention in the first year of life in one of 17 UK paediatric cardiac surgical centres operating during 1992-1995. A comparison group of classmates of similar age and sex was recruited.Main outcome measuresChild self-report of health-related QoL scores (Pediatric Quality of Life Inventory, PedsQL) and parental report of schooling and social activities.ResultsQuestionnaires were completed by 477 children with CHDs (56% boys; mean age 12.1 (SD 1.0) years) and 464 classmates (55%; 12.0 (SD 1.1) years). Children with CHDs rated QoL significantly lower than classmates (CHDs: median 78.3 (IQR 65.0-88.6); classmates: 88.0 (80.2-94.6)) and scored lower on physical (CHDs: 84.4; classmates: 93.8; difference 9.4 (7.8 to 10.9)) and psychosocial functioning subscales (CHDs: 76.7, classmates: 85.0; difference 8.3 (6.0 to 10.6)). Cardiac interventions, school absence, regular medications and non-cardiac comorbidities were independently associated with reduced QoL. Participation in sport positively influenced QoL and was associated with higher psychosocial functioning scores.ConclusionsChildren with serious CHDs experience lower QoL than unaffected classmates. This appears related to the burden of clinical intervention rather than underlying cardiac diagnosis. Participation in sports activities is positively associated with increased emotional well-being. Child self-report measures of QoL would be a valuable addition to clinical outcome audit in this age group.
| S-EPMC3995241 | biostudies-literature
Project description:BackgroundChildren with congenital heart defects (CHD) requiring open-heart surgery are a group at high risk for health-related sequelae. Little consensus exists regarding their long-term psychological adjustment (PA) and health-related quality of life (QoL). Thus, we conducted a systematic review to determine the current knowledge on long-term outcome in this population.MethodsWe included randomized controlled trials, case control, or cohort studies published between 1990-2008 evaluating self- and proxy-reported PA and QoL in patients aged between two and 17 years with a follow-up of at least two years after open heart surgery for CHD.ResultsTwenty-three studies assessing psychological parameters and 12 studies assessing QoL were included. Methodological quality of the studies varied greatly with most studies showing a moderate quality. Results were as follows: (a) A considerable proportion of children experienced psychological maladjustment according to their parents; (b) studies on self-reported PA indicate a good outcome; (c) the studies on QoL suggest an impaired QoL for some children in particular for those with more severe cardiac disease; (d) parental reports of psychological maladjustment were related to severity of CHD and developmental delay.ConclusionA significant proportion of survivors of open-heart surgery for CHD are at risk for psychological maladjustment and impaired QoL. Future research needs to focus on self-reports, QoL data and adolescents.
| S-EPMC2642822 | biostudies-literature
Project description:Background Socioeconomic status ( SES ) is associated with health-related quality of life ( HRQOL ) for children with critical congenital heart disease; however, literature from newly industrialized countries is scarce. Methods and Results This cross-sectional study included 2037 surviving patients operated on for critical congenital heart disease at a tertiary hospital in China between May 2012 and December 2015. All eligible patients were aged 2 to 12 years. HRQOL was measured by the Pediatric Quality of Life Inventory 4.0 generic and 3.0 cardiac modules. Family SES was assessed by a composite of household income in the past year and occupation and education level of each parent in the family. Mean scores of major domains in HRQOL were significantly lower in the low- SES group than in the medium- and high- SES groups (total generic scores: 71.2±7.9 versus 75.0±8.0 and 76.0±7.9, respectively [ P<0.001]; psychosocial functioning: 70.8±9.0 versus 74.4±8.4 and 75.3±8.4 [ P<0.001]; physical functioning: 71.6±10.4 versus 76.0±9.7 and 77.1±9.4 [ P<0.001]; heart symptoms: 71.9±11.6 versus 75.7±11.0 and 76.8±10.3 [ P<0.001]; cognitive problems: 65.4±11.1 versus 69.4±12.1 and 74.6±13.6 [ P<0.001]). After adjustment for other clinical and demographic variables in the multivariable linear regression model, family SES significantly affected all dimensions of HRQOL except for treatment barriers, treatment anxiety, physical appearance and communication. Conclusions Family SES is an important factor associated with HRQOL in patients with critical congenital heart disease. Further targeted interventions to improve HRQOL that consider the family and environmental issues confronted by those who are economically disadvantaged might help these patients have better outcomes.
| S-EPMC6405710 | biostudies-literature
Project description:IntroductionThe presence of atrial septal defect (ASD) or ventricular septal defect (VSD) significantly affects children's quality of life and, if not treated adequately, can contribute to increased mortality. In this study, we evaluated and compared the health-related quality of life (HRQL) of children who underwent treatment using either minimally invasive closure (MIC) or interventional closure (IC).Materials and methodsIn this observational and comparative study 199 children (2 to 4.5 years of age) underwent closure treatment for simple ASD or VSD at the Children's Hospital of Chongqing Medical University between February 2021 and September 2021. Of these, 116 were treated with IC and 83 with MIC. Both preoperative and postoperative HRQL scores were assessed using the PedsQLTM3.0 Cardiac Module and the children were followed up at 3 and 6 months after surgery.ResultsThe two groups did not differ significantly in terms of demographics, baseline clinical characteristics, or pre-operative data. The duration of anesthesia (45 mins vs. 109 mins), procedures (25 mins vs. 48 mins), and length of postoperative hospital stay (4.32 days vs. 6.87 days) in the IC group were significantly less than in the MIC group (P < 0.001). The incidence of postoperative pneumonia in the VSD patients who underwent MIC was significantly higher than in those who underwent IC treatment (28.9% vs. 0 percent, P < 0.001). The HRQL scores increased significantly in both groups following treatment and follow-up evaluations (P < 0.001). The mean HRQL score of the IC group 3 months after treatment was significantly higher than that of the MIC group (88.9 vs. 85.7, P < 0.001), indicating a significant increase from the baseline score compared with the MIC group (5.4 vs. 2.6, P < 0.001). The IC group also showed higher scores than the MIC group (P < 0.05) in the dimensions of "Heart Problems and Treatment," "Treatment Anxiety," and "Cognitive Problems," with higher scores indicating fewer problems.ConclusionThe health-related quality of life in children with ASD and VSD improved continuously regardless of IC or MIC intervention. However, IC led to better HRQL in the early postoperative stage.
| S-EPMC9583532 | biostudies-literature
Project description:We used Affymetrix CytoScan750K array to detect the pathogenic copy number variations in 7 Chinese children with congenital heart disease
2021-10-01 | E-MTAB-8315 | biostudies-arrayexpress
Project description:BackgroundCongenital heart disease (CHD) is the most common congenital anomaly at birth, affecting approximately 1% of live births. In recent decades great medical and surgical advances have significantly increased life expectancy, shifting healthcare professionals' and researchers' interests in patients' Quality of Life (QoL). The main aims of our study were to evaluate generic and condition-specific QoL in a group of Italian children and adolescents with CHD and their parents and examine the level of agreement and directional disagreement between child/adolescent and parents reports on generic and condition-specific QoL.MethodsA cross-sectional study was designed with CHD children and adolescents and their parents referred to the Cardiology Department of "Bambino Gesù" Children's Hospital. The PedsQL scale was used, including generic (PedsQL 4.0) and cardiac-specific modules (PedsQL 3.0) were administered to patients and caregivers. A Kruskal-Wallis test was used to compare generic and cardiac module scores between patients with different ages, CHD diagnoses, and between patients who underwent surgery interventions and/or are currently taking cardiac medications.Results498 families were enrolled in this study. On average, patients reported a good level of generic and condition-specific QoL, as well as their mothers and fathers. Children aged between 5-7 years old reported lower generic and cardiac-specific total QoL levels than children aged 8-12 years and adolescents (13-18 years). With regard to the agreement, patient-parent agreement on condition-specific QoL ranged from 25 to 75% while on generic QoL, it ranged from 19 to 76%. The highest percentage of disagreement between parents and children was found in patients aged 5-7 years old, both for condition-specific and generic QoL rates.ConclusionsOur study contributed to the growing body of knowledge on QoL in CHD, emphasizing the need for these families to receive support from multidisciplinary standardized care, including psychological consultations and support.
| S-EPMC9013137 | biostudies-literature
Project description:AimsHaving a child with congenital heart disease (CHD) can affect parental health-related quality of life (HR-QoL). We investigated the long-term trajectories of mental HRQoL (m-HRQoL) in mothers of children with CHD and examined risk factors for persistent low m-HRQoL.MethodsOne hundred twenty-five mothers of children with CHD completed a standardized questionnaire on m-HRQoL (mental subscale SF-12) after the children's first open-heart surgery and subsequently when the children were 1, 4, 6, 10, and 13 years old. A z-score for m-HRQoL was calculated with national norms. Latent class growth analysis (LCGA) was used to identify subgroups of mothers with regards to their m-HRQoL trajectories over time. Regression analysis investigated predictors for chronically low m-HRQoL.ResultsCompared to norms, mothers of children with CHD had significantly lower m-HRQoL immediately after open-heart surgery (β = -0.30 (CI-95: -0.44, -0.15)). Subsequently, m-HRQoL increased to a normal level (m-HRQoL compared to the norm from 1 to 13 years: β ranges between 0.05 and 0.27). LCGA revealed two distinct groups of m-HRQoL trajectories: A group with normal m-HRQoL (75% of mothers, means z-scores range between - 0.76 and 0.62) and a group with chronically low m-HRQoL (25% of mothers, mean z-scores range between -1.32 and -0.10). Chronically, low m-HRQoL was associated with poorer social support (OR = 3.39 (CI-95: 1.40, 8.49), p = 0.008) but not with parental education, migration background, number of open-heart surgeries, diagnosis of a univentricular CHD, or low IQ.ConclusionA quarter of mothers of children with CHD have chronically low m-HRQoL throughout their child's development, especially those mothers with poor social support. Further studies of family-oriented approaches are needed to identify and support these mothers and reinforce parental well-being.
| S-EPMC10474212 | biostudies-literature
Project description:ObjectiveThere are limited data on health-related quality of life (HRQOL) for children and adolescents with uncorrected congenital heart disease (CHD) from low-income and middle-income countries where late presentation is common. We sought to compare HRQOL of children and adolescents with uncorrected CHD to that of controls using the Pediatric Quality of Life Inventory (PedsQL 4.0).MethodsThe study design is a cross-sectional analytical survey. The study setting was (1) Hospital-based survey of patients with CHD and their parents. (2) Community survey of controls and their parents. Subjects included (1) Children/adolescents with CHD between the ages of 2 years and 18 years and their parents enrolled in a previous study (n=308). (2) Unmatched community controls (719 children/adolescents, aged 2-18 years) and their parents. Participants were given PedsQL 4.0 to fill out details. Parents assisted children 5-7 years of age in filling the questionnaires. Children younger than 5 years had only parent-reported HRQOL and those above 5 years had both self-reported and parent-reported HRQOL.ResultsThe median (IQR) total generic HRQOL from self-reports for CHD subjects and controls were 71.7 (62.0, 84.8) and 91.3 (82.6, 95.7), respectively. The corresponding figures for parent-reports were 78.3 (63.0, 90.5) and 92.4 (87.0, 95.7) respectively. The adjusted median difference was -20.6 (99% CI -24.9 to -16.3, p<0.001) for self-reported and -14.1 (99% CI -16.7 to -11.6, p<0.001) for parent-reported total HRQOL between patients with CHD and controls. Cardiac-specific HRQOL by self-reports was 75.0 (53.6, 92.9) for heart problems, 95.0 (73.8, 100.0) for treatment barriers, 83.3 (66.7, 100.0) for physical appearance, 87.5 (62.5, 100.0) for treatment-related anxiety, 91.7 (68.8, 100.0) for cognitive problems and 83.3 (66.7, 100.0) for communication. The values for parent-reports were 71.4 (53.6, 85.7), 100.0 (75.0, 100.0), 100.0 (75.0, 100.0), 81.3 (50.0, 100.0), 100.0 (81.2, 100.0) and 83.3 (50.0, 100.0), respectively.ConclusionsChildren and adolescents with uncorrected CHD reported significant reductions in overall quality of life compared with controls.
| S-EPMC6542428 | biostudies-literature
Project description:Congenital heart disease (CHD) is the most common birth defect in newborns, often requiring cardiac surgery with concomitant thymectomy that is known to increase disease susceptibility later in life. Studies of γδ T cells, which are one of the dominant T cells in the early fetal human thymus, are rare. Here, we provide a comprehensive analysis of the γδ T cell compartment via flow cytometry and next-generation sequencing in children and infants with CHD, who underwent cardiac surgery shortly after birth. A perturbation of the γδ T cell repertoire is evident and Vδ1 T cell numbers are reduced. However, those cells that are present, do retain cytotoxicity. In contrast, GZMA+CD28+CD161hi innate effector Vγ9Vδ2 T cells are found in higher proportions. TCR-seq identifies an increase in TRDJ3+ γδ T cell clones in children with CHD, but not in a confirmatory group of neonates prior to CHD surgery, which overall points to a persistence of fetal-derived effector γδ T cells in children with CHD.
2024-08-06 | GSE274083 | GEO
Project description:The objective of this study was to assess the quality of life and psychological wellbeing of adults with congenital heart disease (CHD) in Chile, and to identify other associated factors. The study enrolled 68 patients aged between 18 and 72 (median 29), 35 being females. They completed a questionnaire, which included a quality of life assessment tool (the Medical Outcome Study 36-Item Short Form Health Survey), a number of psychological scales (the General Health Questionnaire, the Basic Psychological Needs Scales and the Beck Hopelessness Scale), a socioeconomic survey, and some clinical data. CHD patients reported worse scores in those scales assessing physical dimensions of quality of life (physical function (70.5), physical role functioning (64), vitality (65.3)), and general quality of life (58.6), than in emotional or social dimensions. Female gender was associated with lower scores in physical function (59.12 versus 82.66; p<0.01) and physical role functioning (53.68 versus 75; p<0.05); poverty was associated with worse results in physical function (61.92 versus 82.96; p<0.01), role physical (53.21 versus 79.63; p<0.01), vitality (60.89 versus 71.67; p<0.05), social role functioning (70.19 versus 82.87; p<0.05) and bodily pain (65.77 versus 81.2; p<0.05). Furthermore, we found that psychological scales had an association with quality of life, but clinical variables did not show significant correlations to any dimension. Poverty has an impact on the quality of life of CHD patients. This population only has a decrease in the quality of life physical dimensions, suggesting that quality of life depends on many different factors.
| S-EPMC7544072 | biostudies-literature