Health-related quality of life in congenital heart disease surgery in children and young adults: a systematic review and meta-analysis

Ladak, Laila Akbar; Hasan, Babar; Gullick, Janice; Gallagher, Robyn

doi:10.1136/archdischild-2017-313653

Cited by 51 publications

(39 citation statements)

References 71 publications

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“…after palliative single ventricle surgical repair, remains lower than in CHD eligible to biventricular surgical repair (44), such as tetralogy of Fallot (34). As in our previous studies in older children, this study con rms the negative impact of repeated invasive cardiac procedures (surgery or catheterization) on HRQoL (10,51). Moreover, children with a CHD may suffer from an impaired physical capacity, which directly impacts the physical dimension of their HRQoL (6).…”

Section: Discussionsupporting

confidence: 74%

Health-related quality of life in children with congenital heart disease aged 5 to 7 years: a multicentre controlled cross-sectional study

Abassi¹,

Huguet²,

Picot³

et al. 2020

Preprint

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Background In the context of tremendous progress in congenital cardiology, more attention has been given to patient-related outcomes, especially in assessing health-related quality of life (HRQoL) of patients with congenital heart diseases (CHD). However, most studies have mainly focused on teenagers or adults and currently, few HRQoL controlled data is available in young children. This study aimed to evaluate HRQoL of children with CHD aged 5 to 7 y.o., in comparison with contemporary peers recruited in school, as well as the factors associated with HRQoL in this population. Methods This multicentre controlled prospective cross-sectional study included 124 children with a CHD (mean age = 6.0 ± 0.8 y, 45% female) during their outpatient visit and 125 controls (mean age = 6.2 ± 0.8 y, 54% female) recruited at school. A generic paediatric HRQoL instrument was used (PedsQL 4.0). Results Self-reported HRQoL in children with CHD was similar to controls, overall (73.5 ± 1.2 vs. 72.8 ± 1.2, P = 0.7, respectively), and for each dimension. Parents-reported HRQoL was significantly lower in the CHD group than in controls. HRQoL was predicted by the disease severity and by repeated invasive cardiac procedures (surgery or catheterization). Conclusion HRQoL in young children with CHD aged 5 to 7 years old was good and similar to controls. This study contributed to the growing body of knowledge on HRQoL in congenital cardiology and emphasized the need for child and family support in the most complex CHD. Trial registration: This study was approved by the institutional review board of Montpellier University Hospital (2019_IRB-MTP_02–19) on 22 February 2019 and was registered on ClinicalTrials.gov (NCT03931096) on 30 April 2019, https://clinicaltrials.gov/ct2/show/NCT03931096.

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Section: Discussionsupporting

confidence: 74%

Health-related quality of life in children with congenital heart disease aged 5 to 7 years: a multicentre controlled cross-sectional study

Abassi¹,

Huguet²,

Picot³

et al. 2020

Preprint

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“…This result is surprising as other authors had described impaired HRQoL in children with isolated ARM 24,25 or congenital heart disease. 26 Additionally, it has also been shown that these concomitant anomalies are a major influential factor for reduced HRQoL in patients with a history of EA. 27,28 The reason why presence of ARM or congenital heart disease had no negative influence on HRQoL in our collective remains largely unclear.…”

Section: Discussionmentioning

confidence: 99%

Generic Health-Related Quality of Life after Repair of Esophageal Atresia and Its Determinants within a German–Swedish Cohort

et al. 2018

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Aim Despite advances of outcomes of esophageal atresia (EA), knowledge on patients' health-related quality of life (HRQoL) is sparse. Due to the heterogeneity of EA, larger cohorts need to be investigated to ensure reliability of data. Aim was to determine generic HRQoL after EA repair in a Swedish–German cohort. Patients and Methods Ethical approval was obtained. A total of 192 patients (2–18 years; 134 Swedish; 58 German) were included. Clinical data were reviewed. EA was classified in “severe” and “mild/moderate.” Pediatric Quality of Life Inventory 4.0 Generic Core Scale (PedsQL 4.0) was used in appropriate versions (2–7 years; 8–18 years; self- [SR] and proxy report [PR]) to determine generic HRQoL. Results Swedish and German samples were clinically and demographically comparable. HRQoL was lower in “severe EA” versus “mild/moderate” (2–18 years; total score; PR 85.6 vs. 73.6; p < 0.001) and Gross A versus Gross C type EA (2–7 years; total score; PR 61.0 vs. 79.3; p = 0.035). Total HRQoL was higher in the Swedish versus German sample (2–18 years; total score; PR 82.3 vs. 72.7; p = 0.002). HRQoL was impaired in the German sample versus healthy population (2–18 years; total score; PR 72.7 vs. 82.7; p = 0.001). In German patients (8–18 years), HRQoL was higher in SR versus PR (80.7 vs. 74.7; p = 0.044). Patients' age and presence of VACTERL association or isolated anorectal malformations did not affect HRQoL. Various differences were detected regarding different dimensions of PedsQL 4.0. Conclusion In this first international study, we found several differences in perception of generic HRQoL. HRQoL appears to be determined by the type of EA and severity rather than patients' age or the presence of typical associated malformations. Country-specific differences may be culturally dependent, but further investigations are suggested. A condition-specific instrument validated for EA may provide additional insights.

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“…This suggests that the results of the studies were a function of the instruments used or of the normative data available. For cardiac‐specific QoL, patients with complex heart defects had worse scores in the domains of symptoms, cognitive problems and treatment barriers than individuals with moderate or simple defects .…”

Section: Introductionmentioning

confidence: 99%

“…In 2019, a literature review and meta‐analysis of 20 studies were published on health‐related QoL in children and young adults who had previously undergone cardiac surgery . Patients reported lower scores than healthy controls with regard to generic health‐related QoL, with the largest difference seen in physical functioning.…”

Section: Introductionmentioning

confidence: 99%

Quality‐of‐life research in adult patients with congenital heart disease: current status and the way forward

Moons

Luyckx

2019

Acta Paediatrica

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Over the past four decades, the number of papers on quality of life (QoL) in congenital heart disease (CHD) has grown exponentially. However, firm conclusions have been hard to draw, because conceptual issues occurred and methodological differences prevented direct comparisons of studies. In general, QoL in CHD patients is good and it can be even better than in healthy peers when measured as life satisfaction. When QoL is measured as physical functioning, patients with complex CHD do worse than patients with moderate or mild defects or healthy individuals. APPROACH-IS was a large-scale international project that confirmed international variations in QoL, with Australian patients reporting the best QoL. Poor QoL was predicted by older age, being a job seeker, unemployed or disabled, never having married and those with worse functional status. Perceived illness and religion and spirituality were also significant predictors for QoL. On the other hand, country-specific characteristics and healthcare system factors did not play a significant role in explaining variances in QoL of patients with CHD around the globe. Future studies should rely on a sound conceptual basis, use longitudinal research designs, be conducted in international, multi-centre settings and evaluate interventions that promote patients' QoL.

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Health-related quality of life in congenital heart disease surgery in children and young adults: a systematic review and meta-analysis

Abstract: CHD surgical patients have substantially worse HRQOL compared with age-matched healthy controls. Strategies should focus on improving HRQOL in this subgroup. Results may not be applicable to low/middle-income countries given the dearth of relevant research.

Cited by 51 publications

References 71 publications

Health-related quality of life in children with congenital heart disease aged 5 to 7 years: a multicentre controlled cross-sectional study

Health-related quality of life in children with congenital heart disease aged 5 to 7 years: a multicentre controlled cross-sectional study

Generic Health-Related Quality of Life after Repair of Esophageal Atresia and Its Determinants within a German–Swedish Cohort

Quality‐of‐life research in adult patients with congenital heart disease: current status and the way forward

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