Religion and spirituality as predictors of patient-reported outcomes in adults with congenital heart disease around the globe

Moons, Philip; Luyckx, Koen; Dezutter, Jessie; Kovacs, Adrienne H.; Thomet, Corina; Budts, Werner; Enomoto, Junko; Sluman, Maayke A.; Yang, Hsuan-Chia; Jackson, Jamie L.; Khairy, Paul; Subramanyan, Raghavan; Alday, Luis; Eriksen, Katrine; Dellborg, Mikael; Berghammer, Malin; Johansson, Bengt; Mackie, Andrew S.; Menahem, Samuel; Caruana, Maryanne; Veldtman, Gruschen; Soufi, Alexandra; Fernandes, Susan M.; White, Kamila S.; Callus, Edward; Kutty, Shelby; Apers, Silke

doi:10.1016/j.ijcard.2018.07.103

Cited by 29 publications

(33 citation statements)

References 26 publications

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“…Socio‐demographic data were collected by self‐reports and information on medical history was retrieved by chart reviews. Details on the methodology of APPROACH‐IS have been provided in a methods paper , and numerous papers have described findings obtained from this global sample or from patients from specific countries or regions .…”

Section: Approach‐ismentioning

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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Section: Approach‐ismentioning

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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“…In the past three decades, tremendous progress in patient's management has significantly improved the overall prognosis, and, consequently, transferred the mortality in CHD from childhood to adulthood . As a result, after focusing on the survival of children with CHD, more attention is currently being given to health‐related quality of life and psychological well‐being of the children and their parents . Indeed, despite these great advances, psychological trauma is not uncommon for CHD survivors .…”

Section: Introductionmentioning

confidence: 99%

“…When considering the impact of CHD diagnosis on the parental psychological state, some studies stated that posttraumatic stress disorders were observed in more than 30% of the parents, with major depressive episodes in 25%‐50% of cases . The psychological well‐being of the parents has been considered as a major factor influencing the psychological state of the expected child, sometimes above the CHD severity itself .…”

Section: Introductionmentioning

confidence: 99%

“…2 As a result, after focusing on the survival of children with CHD, more attention is currently being given to health-related quality of life and psychological well-being of the children and their parents. 3,4 Indeed, despite these great advances, psychological trauma is not uncommon for CHD survivors. 5 Moreover, we recently showed that the quality of life was impacted by the number of invasive procedures and the level of anxiety in the CHD population.…”

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confidence: 99%

“…13 However, we did not evaluate the level of parental anxiety.When considering the impact of CHD diagnosis on the parental psychological state, some studies stated that posttraumatic stress disorders were observed in more than 30% of the parents, with major depressive episodes in 25%-50% of cases. [3][4][5] The psychological well-being of the parents has been considered as a major factor influencing the psychological state of the expected child, sometimes above the CHD severity itself. 14 We also have to take into account that maternal anxiety during pregnancy can have consequences on long-term child neurodevelopment.…”

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Parental anxiety before invasive cardiac procedure in children with congenital heart disease: Contributing factors and consequences

Werner

Louali

Fouilloux

et al. 2019

Congenital Heart Disease

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Objective Medical information provided to parents of a child with a congenital heart disease can induce major stress. Visual analog scales have been validated to assess anxiety in the adult population. The aim of this study was to analyze parental anxiety using a visual analog scale and to explore the influencing factors. Design This prospective cross‐sectional study. Setting Tertiary care regional referral center for congenital heart disease of Marseille—La Timone university hospital. Patients Parents of children with a congenital heart disease, as defined by the ACC‐CHD classification, referred for cardiac surgery or interventional cardiac catheterization, were offered to participate. Intervention and outcome measure The parental level of anxiety was assessed using a visual analog scale (0‐10) before intervention and after complete information given by the cardiologist, the surgeon or the anesthetists. Results Seventy‐three children [7 days‐13 years], represented by 49 fathers and 71 mothers, were included in the study. A total of 42 children required cardiac surgery and 31 children underwent interventional cardiac catheterization. The mean score of maternal anxiety was significantly higher than the paternal anxiety (8.2 vs 6.3, P < .01). A high level of maternal anxiety (visual analog scale > 8) was associated with paternal anxiety (P = .02), the child's comorbidity (P = .03), the distance between home and referral center (P = .04), and the level of risk adjustment for congenital heart surgery (P = .01). In multivariate analysis, maternal anxiety was associated with paternal anxiety (OR = 4.9; 95% confidence interval [1.1‐19.2]), and the level of risk adjustment for congenital heart surgery (OR = 11.4; 95% confidence interval [1.2‐116.2]). No significant association was found between parental anxiety and prenatal diagnosis. Conclusion This study highlighted several factors associated with the parental anxiety. Identifying the parents at risk of high stress can be useful to set up psychological support during hospitalization.

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Religiosity in patients with amyotrophic lateral sclerosis, a cross-country comparison

et al. 2023

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Purpose Amyotrophic lateral sclerosis (ALS) is a progressive motor impairment leading to early death. Religiousness is one of the factors potentially alleviating the psychological burden of patients. However, its role might vary according to cultural context. Our study aimed to analyze religiosity, and its clinical, psychological and socio-demographic correlates in ALS patients and controls, comparing two European countries with different cultural backgrounds. Methods 268 Polish and German ALS patients, including 18 with locked-in syndrome (LIS) and 198 healthy controls (HC) were interviewed about religiousness, quality of life (Qol), depression, functional status and pain. A follow-up was conducted on 71 patients. Results Polish subjects had a significantly higher level of public, private and general religiosity than the German sample. Importantly, we found no difference in total and public religiousness between ALS patients and HC within either population. Only the private religiousness was significantly higher in German patients compared to controls. In the same sample, private religiousness correlated with functional impairment due to disease progression. In ALS groups and LIS patients, religiousness did not correlate with any disease-associated factors: disease duration, pain, Qol or depression. Follow-up comparisons in the ALS group revealed worsening functional status, increased depression and no significant change in religiosity. Conclusions Religiosity was linked to the cultural background rather than ALS. Generally, it did not correlate with clinical, psychological and socio-demographic parameters and was stable throughout disease progression. The only exception was the relationship between the functional decline and private religiosity among German patients.

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Religion and spirituality as predictors of patient-reported outcomes in adults with congenital heart disease around the globe

Abstract: Religiosity/spirituality is an independent predictor for some PROs, but has differential impact across countries.

Cited by 29 publications

References 26 publications

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

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

Parental anxiety before invasive cardiac procedure in children with congenital heart disease: Contributing factors and consequences

Religiosity in patients with amyotrophic lateral sclerosis, a cross-country comparison

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