Quality of life and life satisfaction among adults with and without congenital heart disease in a developing country

Eslami, Bahareh; Macassa, Glória; Sundin, Örjan; Khankeh, Hamid Reza; Soares, Joaquim

doi:10.1177/2047487313514017

Cited by 22 publications

(25 citation statements)

References 29 publications

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“…Our results for FCC-based comparisons of HRQOL are similar to several studies 5 21–25. Together, these studies suggest that there is either minimal or no congruence between estimated QOL and the severity/type of CHD.…”

Section: Discussionsupporting

confidence: 86%

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

Raj

Sudhakar

Roy

et al. 2019

bmjpo

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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.

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Section: Discussionsupporting

confidence: 86%

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

Raj

Sudhakar

Roy

et al. 2019

bmjpo

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“…Cardiac symptoms affected participants' health-related quality of life even after surgery, particularly their emotional and physical functioning which is in agreement with other studies. 14,[31][32][33] The APPROACH IS study (15 countries across five continents) reported an overall good quality of life and life satisfaction in adults with CHD but high cross-country variability. 8 While these differences may arise from variability in income, the use of a linear analogue scale for life satisfaction, rather than standard health-related quality of life tools may also have been possible reasons for this variability.…”

Section: Discussionmentioning

confidence: 99%

“…This could be explained by most participants living in an extended family structure. Family support has been highlighted as an important contributor to emotional and social support 14,37 and informs a problem-solving approach to coping. 17 It has been proposed that social support, and family socialisation accompanied by childhood experiences of overcoming adversity, may build a sense of coherence that improves quality of life in CHD.…”

Section: Discussionmentioning

confidence: 99%

“…12 Early diagnosis, particularly prenatal diagnosis, and early management support better outcomes. 13 Gender may also predict outcome, again inconsistently, with one study demonstrating poorer health-related quality of life for males 14 and another for females. 15,16 In addition, psychosocial factors including the coping styles, 17 and self-perceptions of adults with CHD particularly in relation to the social norms and cultural values are also predictors of health-related quality of life.…”

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confidence: 99%

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Health-related quality of life in adult CHD surgical patients in a low middle-income country: a mixed-methods study

et al. 2020

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Background and objectives: This mixed-methods study aimed to assess health-related quality of life in young adults with CHD following surgery in a low middle-income country, Pakistan. Despite the knowledge that geographic, cultural and socio-economic factors may shape the way health and illness is experienced and managed and consequently determine a person’s health-related quality of life, few health-related quality of life studies are conducted in low middle-income countries. This deficit is pronounced in CHD, so there is little guidance for patient care. Methods: The study utilised concurrent, mixed methods. Adults with CHD (n = 59) completed health-related quality of life surveys (PedsQLTM 4.0 Generic Core Scale, PedsQLTM Cognitive Functioning Scale and PedsQLTM 3.0 Cardiac Module). Semi-structured interview data were collected from a nested sub-sample of 17 participants and analysed using qualitative content analysis, guided by the revised Wilson–Cleary model of health-related quality of life. Results: The lowest health-related quality of life domain was emotional with the mean score (71.61 ± 20.6), followed by physical (78.81 ± 21.18) and heart problem (79.41 ± 18.05). There was no statistical difference in general or cardiac-specific health-related quality of life between mild, moderate or complex CHD. Qualitative findings suggested low health-related quality of life arose from a reduced capacity to contribute to family life including family income and gender. A sense of reduced marriageability and fear of dependency were important socio-cultural considerations. Conclusions: CHD surgical patients in this low-income country experience poor health-related quality of life, and contributing factors differ to those reported for high-income countries. Socio-cultural understandings should underpin assessment, management and care-partnering with young adults with CHD following surgical correction.

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“…Adult patients with moderate CHD undergo multiple interventions that might result in longterm complications and sequelae, which lead to poorer quality of life compared with the normal population. [3][4][5][6][7] Beyond their medical issues, these patients also face various other social and emotional challenges related to employment, marriage, and modification of lifestyle. 8 Unfortunately, their psychological conditions are often ignored and under-treated, even though they are at high risk for developing anxiety and mood disorders.…”

Section: A Dvances In Imaging Intensive Care Andmentioning

confidence: 99%

Types of social supports predicting health-related quality of life among adult patients with CHD in the Institut Jantung Negara (National Heart Institute), Malaysia

2016

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In total, 205 adult patients with CHD from the National Heart Institute, Malaysia, were recruited. Patients were first screened by cardiology consultants to ensure they fit the inclusion criteria before filling in questionnaires, which were medical outcome studies - social support survey and AQoL-8D. Results/conclusions All social supports and their subscales were found to have mild-to-moderate significant relationships with physical dimension, psychological dimension, and overall HRQoL; however, only positive interaction, marital status, and types of diagnosis were reported as predictors of HRQoL. Surprisingly, with regard to the physical dimension of quality of life, social supports were not significant predictors, but educational level, marital status, and types of diagnosis were significant predictors. Positive interaction, affectionate support, marital status, and types of diagnosis were again found to be predictors in the aspects of the psychological dimension of quality of life. In conclusion, positive interaction and affectionate support, which include elements of fun, relaxation, love, and care, should be included in the care of adult patients with CHD.

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Quality of life and life satisfaction among adults with and without congenital heart disease in a developing country

Abstract: The adults with CHD had poorer QoL and LS than their non-CHD peers in our developing country. Socio-demographics, emotional health, and social support were important 'determinants' of QoL and LS among the CHD patients. Longitudinal studies are warranted to establish causal links.

Cited by 22 publications

References 29 publications

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

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

Health-related quality of life in adult CHD surgical patients in a low middle-income country: a mixed-methods study

Types of social supports predicting health-related quality of life among adult patients with CHD in the Institut Jantung Negara (National Heart Institute), Malaysia

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