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Health-related quality of life (HRQOL) in children and adolescents with congenital heart disease: a cross-sectional survey from South India.

ABSTRACT: Objective:There 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). Methods:The 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. Results:The 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. Conclusions:Children and adolescents with uncorrected CHD reported significant reductions in overall quality of life compared with controls.

SUBMITTER: Raj M

PROVIDER: S-EPMC6542428 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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Health-related quality of life (HRQOL) in children and adolescents with congenital heart disease: a cross-sectional survey from South India.

Raj Manu M Sudhakar Abish A Roy Rinku R Champaneri Bhavik B Sudevan Remya R Kabali Conrad C Kumar Raman Krishna RK

BMJ paediatrics open 20190403 1

<h4>Objective</h4>There 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).<h4>Methods</h4>The study design is a cross-sectional analytical survey. The study setting was (1) Hospita ...[more]

PMID: 31206069

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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.

Project description:BackgroundLittle is known about the quality of life (QOL) and health status of adults with congenital heart disease (CHD) in developing countries. Therefore, this study aimed to describe the QOL and health status of hospitalized adults with CHD in Vietnam and investigate the association between QOL and their biological-social characteristics.MethodsA cross-sectional study was conducted with 109 adults with CHD, hospitalized in the Vietnam National Heart Institute, between June and December 2019. Validated instruments to assess QOL and health status describing patient-reported outcomes were used, including the EuroQOL-5 Dimensions-5 Level, Satisfaction with Life Scale, and Hospital Anxiety and Depression Scale.ResultsThe mean scores on the EuroQOL-descriptive system (EQ-DS) and EuroQOL visual analogue scale (EQ-VAS) were 0.792 (SD = 0.122, 95% confidence interval [CI] 0.769-0.815) and 66.3 (SD = 12.5, 95% CI 63.9-68.7), respectively. A total of 9.2% (n = 9) patients experienced life dissatisfaction. The prevalence of anxiety and depression were 18.7% (n = 20) and 11% (n = 12), respectively. Scores of QOL in patients aged > 30 years were lower than in those aged ≤ 30 years. Stratified multivariate logistic regression revealed that poor QOL related to being unemployed/unstable employment (OR 4.43, 95% CI 1.71-11.47, p = 0.002), life dissatisfaction associated with unmarried status (OR 4.63, 95% CI 1.2-17.86, p = 0.026), anxiety regarding unemployment/unstable employment (OR 3.88, 95% CI 1.27-11.84, p = 0.017) and complex CHD/PAH (OR 4.84, 95% CI 1.33-17.54, p = 0.016), and depression regarding unemployment/unstable employment (OR 4.63, 95% CI 1.22-17.59, p = 0.003).ConclusionsReduced QOL and elevated psychological problems were common experiences among hospitalized adults with CHD in Vietnam. Biological-social characteristics such as unmarried status, unemployment/unstable employment, and complex CHD/PAH related to poor QOL, life dissatisfaction, anxiety, and depression.

Project description:ObjectiveThe present cross-sectional study investigated quality of life (QOL) in a large cohort of German adults with congenital heart disease (ACHDs) in association with patient-related and clinical variables.DesignCross-sectional survey.ParticipantsBetween 2016 and 2019, a representative sample of 4014 adults with various forms of congenital heart defect (CHD) was retrospectively analysed. Inclusion criteria were confirmed diagnosis of CHD; participant aged 18 years and older; and necessary physical, cognitive and language capabilities to complete self-report questionnaires.Primary and secondary outcome measuresQOL was assessed using the 5-level EQ-5D version (EQ-5D-5L). Sociodemographic and medical information was obtained by a self-devised questionnaire. Associations of QOL with patient-reported clinical and sociodemographic variables were quantified using multiple regression analysis and multiple ordinal logit models.ResultsOverall, ACHDs (41.8±17.2 years, 46.5% female) reported a good QOL comparable to German population norms. The most frequently reported complaints occurred in the dimensions pain/discomfort (mean: 16.3, SD: p<0.001) and anxiety/depression (mean: 14.3, p<0.001). QOL differed significantly within ACHD subgroups, with patients affected by pretricuspid shunt lesions indicating the most significant impairments (p<0.001). Older age, female sex, medication intake and the presence of comorbidities were associated with significant reductions in QOL (p<0.001). CHD severity was positively associated with QOL within the dimensions of self-care (OR 0.148, 95% CI 0.04 to 0.58) and mobility (OR 0.384, 95% CI 0.19 to 0.76).ConclusionCurrent findings temper widely held assumptions among clinicians and confirm that ACHDs experience a generally good QOL. However, specific subgroups may require additional support to cope with disease-related challenges. The negative correlation of QOL with age is especially alarming as the population of ACHDs is expected to grow older in the future.Trial registration numberDRKS00017699; Results.

Project description:ObjectivesThe aim of this study was to evaluate the association between integrated care and health-related quality of life (HRQOL) in a primary care practice population.DesignA cross-sectional survey study.SettingPrimary care practice population.ParticipantsA sample (n=5562) of patients in two general practitioner practices in the Netherlands.Primary outcome measuresThe Rainbow Model of Integrated Care Measurement Tool patient version and EQ-5D was used to assess integrated service delivery and HRQOL. The association between integrated care and HRQOL groups was analysed using multivariate logistic regression.ResultsOverall, 933 respondents with a mean age of 62 participated (20% response rate) in this study. The multivariate analysis revealed that positive organisational coordination experiences were linked to better HRQOL (OR=1.87, 95% CI 1.18 to 2.95), and less anxiety and depression problems (OR=0.36, 95% CI 0.20 to 0.63). Unemployment was associated with a poor HRQOL (OR=0.15, 95% CI 0.08 to 0.28). Ageing was associated with more mobility (OR=1.06, 95% CI 1.04 to 1.09), self-care (OR=1.06, 95% CI 1.02 to 1.11), usual activity (OR=1.03, 95% CI 1.01 to 1.05) and pain problems (OR=1.02, 95% CI 1.01 to 1.04). Being married improved the overall HRQOL (OR=1.60, 95% CI 1.13 to 2.26) and decreased anxiety and depression (OR=0.47, 95% CI 0.31 to 0.72). Finally, females had a poor overall HRQOL (OR=1.67, 95% CI 0.48 to 0.93) and more pain and discomfort problems (OR=1.47, 95% CI 1.11 to 1.95).ConclusionThis study shows for the first time that organisational coordination activities are positively associated with HROQL of adult patients in a primary care context, adding to the evidence of an association between integrated care and HRQOL. Also, unemployment, ageing and being female are accumulating risk factors that should be considered when designing integrated primary care programmes. Further research is needed to explore how various integration types relate to HRQOL for people in local communities.

Dataset Information

Health-related quality of life (HRQOL) in children and adolescents with congenital heart disease: a cross-sectional survey from South India.

Publications

Health-related quality of life (HRQOL) in children and adolescents with congenital heart disease: a cross-sectional survey from South India.

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