scholarly journals ‘Well-being paradox’ revisited: a cross-sectional study of quality of life in over 4000 adults with congenital heart disease

BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e049531
Author(s):  
Caroline Sophie Andonian ◽  
Sebastian Freilinger ◽  
Stephan Achenbach ◽  
Peter Ewert ◽  
Ulrike Gundlach ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Cross Sectional Study ◽  
Secondary Outcome ◽  
Sectional Study ◽  
Cross Sectional ◽  
Patient Reported

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.

scholarly journals Assessment of quality of life among parents of children with congenital heart disease using WHOQOL-BREF: a cross-sectional study from Northwest Saudi Arabia

2019 ◽  
Vol 17 (1) ◽  
Author(s):  
Saad Khoshhal ◽  
Khaled Al-Harbi ◽  
Ibrahim Al-Mozainy ◽  
Saeed Al-Ghamdi ◽  
Adnan Aselan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Internal Consistency ◽  
Congenital Heart ◽  
Cross Sectional Study ◽  
World Health ◽  
Sectional Study ◽  
Cross Sectional

Abstract Background and aims Health-related quality of life (HRQOL) has garnered increasing interest especially for health care providers and researchers. The study aims to evaluate the HRQOL in parents of congenital heart disease (CHD) children, and to clarify the effect of the disease severity on the outcome of the HRQOL perception. Also, to analyze the internal consistency of the Arabic version of the World Health Organization (WHO) QOL-BREEF tool in order to determine whether the tool had good validity for the target population. Methods A cross-sectional study. The HRQOL perception was evaluated using WHOQOL-BREF questionnaire, and the internal consistency of the tool was tested using Cronbach’s alpha (α-C), Results The study sample consisted of 200 individuals, 120 parents of CHD children, compared to 80 parents of children with minor illnesses (mean age of participating parents = 35.1 ± 9.8 years). While evaluating the HRQOL, the group of parents of children with minor illnesses had higher scores than the total group of parents of CHD children in all domains, indicating a better HRQOL. Class-IV subgroup of parents of CHD children showed the most significant lower total score of domains between all classes (44.47 ± 12, p < 0.001). With respect to the internal consistency of the WHOQOL-BREF, estimation of α-C values were 0.84 points for the group of parents of CHD children, and 0.87 for the group of parents of children with minor illnesses. Conclusions This short-term study emphasized that, HRQOL scores among parents of CHD children are compromised, and the severity of their children illness significantly affect the total score of domains in their HRQOL perception. Furthermore, the tool showed to be practical and efficient to evaluate the QOL of parents of CHD children in our population in future researches.

scholarly journals Quality of Life and Health Status of Adults With Congenital Heart Disease in Vietnam: A Cross-Sectional Study

2021 ◽  
Author(s):  
Thanh-Huong Truong ◽  
Ngoc-Thanh Kim ◽  
Mai-Ngoc Thi Nguyen ◽  
Doan-Loi Do ◽  
Hong Thi Nguyen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Disease ◽  
Health Status ◽  
Congenital Heart ◽  
Cross Sectional Study ◽  
Anxiety And Depression ◽  
Sectional Study ◽  
Cross Sectional ◽  
Eq Vas

Abstract Background: Little 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 adults with CHD and investigate the association between QOL and biological and social characteristics of these patients in Vietnam.Methods: A cross-sectional study was performed among 109 adults with CHD, hospitalised in the Vietnam National Heart Institute, between June 2019 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.Results: The overall mean scores on the EuroQOL-descriptive system (EQ-DS) and the 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. Symptoms of anxiety and depression were common among adults with CHD (18.7%, n = 20 and 11%, n = 12; respectively). Stratified multivariate logistic regression revealed: poor QOL using the EQ-DS, and that anxiety related to suffering from a complex CHD/ pulmonary artery hypertension (PAH) (Odds Ratio, OR = 4.55, 95% CI: 1.26–16.4, p = 0.021 and OR = 4.19, 95% CI 1.2–14.56, p = 0.024; respectively); poor QOL using the EQ-VAS, anxiety, and depression related to being unemployed/ unstable employment (OR = 4.16, 95% CI 1.64–10.56, p = 0.003; OR = 3.63, 95% CI 1.23–10.72, p = 0.02 and OR = 7.68, 95% CI 2.09–28.25, p = 0.002; respectively); and life dissatisfaction related to being unmarried (OR = 4.63, 95% CI 1.2–17.86, p = 0.026).Conclusions: Adults with CHD in Vietnam experienced low QOL, and high levels of anxiety and depression. Poor QOL and psychological problems were related to being female, unmarried, low educational level, unemployed/ unstable employ, and complex CHD/ PAH.

scholarly journals Quality of life among adult patients living with diabetes in Rwanda: a cross-sectional study in outpatient clinics

BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e043997
Author(s):  
Charilaos Lygidakis ◽  
Jean Paul Uwizihiwe ◽  
Michela Bia ◽  
Francois Uwinkindi ◽  
Per Kallestrup ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Diabetes Mellitus ◽  
Cross Sectional Study ◽  
Diabetes Control ◽  
Outpatient Clinics ◽  
Secondary Outcome ◽  
Sectional Study ◽  
Cross Sectional ◽  
Social Burden

ObjectivesTo report on the disease-related quality of life of patients living with diabetes mellitus in Rwanda and identify its predictors.DesignCross-sectional study, part of the baseline assessment of a cluster-randomised controlled trial.SettingOutpatient clinics for non-communicable diseases of nine hospitals across Rwanda.ParticipantsBetween January and August 2019, 206 patients were recruited as part of the clinical trial. Eligible participants were those aged 21–80 years and with a diagnosis of diabetes mellitus for at least 6 months. Illiterate patients, those with severe hearing or visual impairments, those with severe mental health conditions, terminally ill, and those pregnant or in the postpartum period were excludedPrimary and secondary outcome measuresDisease-specific quality of life was measured with the Kinyarwanda version of the Diabetes-39 (D-39) questionnaire. A glycated haemoglobin (HbA1c) test was performed on all patients. Sociodemographic and clinical data were collected, including medical history, disease-related complications and comorbidities.ResultsThe worst affected dimensions of the D-39 were ‘anxiety and worry’ (mean=51.63, SD=25.51), ‘sexual functioning’ (mean=44.58, SD=37.02), and ‘energy and mobility’ (mean=42.71, SD=20.69). Duration of the disease and HbA1c values were not correlated with any of the D-39 dimensions. A moderating effect was identified between use of insulin and achieving a target HbA1c of 7% in the ‘diabetes control’ scale. The most frequent comorbidity was hypertension (49.0% of participants), which had a greater negative effect on the ‘diabetes control’ and ‘social burden’ scales in women. Higher education was a predictor of less impact on the ‘social burden’ and ‘energy and mobility’ scales.ConclusionsSeveral variables were identified as predictors for the five dimensions of quality of life that were studied, providing opportunities for tailored preventive programmes. Further prospective studies are needed to determine causal relationships.Trial registration numberNCT03376607.

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

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Hamouda Abassi ◽  
Helena Huguet ◽  
Marie-Christine Picot ◽  
Marie Vincenti ◽  
Sophie Guillaumont ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Children ◽  
Congenital Heart ◽  
Cross Sectional Study ◽  
Health Related Quality ◽  
Sectional Study ◽  
Cross Sectional ◽  
Related Quality ◽  
Health Related

Abstract 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.

scholarly journals Gastrointestinal Symptoms of and Psychosocial Changes in Inflammatory Bowel Disease: A Nursing-Led Cross-Sectional Study of Patients in Clinical Remission

Medicina ◽  
2020 ◽  
Vol 56 (1) ◽  
pp. 45 ◽  
Author(s):  
Rosellina Margherita Mancina ◽  
Raffaele Pagnotta ◽  
Caterina Pagliuso ◽  
Vincenzo Albi ◽  
Daniela Bruno ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Gastrointestinal Symptoms ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Patient Reported ◽  
Inflammatory Bowel ◽  
The Impact

Background and Objectives: Nursing management in Inflammatory Bowel Disease (IBD) is focused on global patient care. Starting from basic knowledge of diagnostic and therapeutic management, nurses can assess the impact of IBD on patients’ quality of life not only at the physical level, but also at the psychological, social, and emotional levels. The aim of this study was to evaluate the impact of gastrointestinal symptoms on psychosocial changes in IBD patients in remission through nursing-led Patient-Reported Outcomes. Materials and Methods: We performed a cross-sectional study of 109 IBD patients in clinical and endoscopic remission. Specialist nurses invited patients to complete questionnaires on gastrointestinal symptoms and quality of life through the Patient-Reported Outcomes Measurement Information System (PROMIS). Results: We found that the gastrointestinal symptoms that the patients reported had a significant impact on the analyzed aspects of health. More specifically, belly pain, diarrhea, and bloating were associated with depressive symptoms (p < 0.001), anxiety (p < 0.001), fatigue (p < 0.001), and sleep disturbances (p < 0.001). Moreover, these symptoms also significantly affected patients’ social dimension in terms of satisfaction with participation in social roles (p < 0.001, p < 0.05, and p < 0.001 for belly pain, diarrhea, and bloating, respectively) and physical functions (p < 0.001). The results were virtually the same in a multivariable analysis adjusted by age, gender, body mass index (BMI), and disease duration. Conclusions: Even during remission, gastrointestinal symptoms are the main factors that influence quality of life in IBD patients. This exploratory study highlights the need to adopt validated questionnaires in clinical practice, and demonstrates that PROMIS is a valid, objective, and standardized instrument that can help nursing staff to better define the consequences of the disease in a patient’s daily life.

scholarly journals Ocular alterations associated with primary congenital heart disease – A cross-sectional study

2020 ◽  
Vol 27 (1) ◽  
pp. 28
Author(s):  
ManuelA P. Vilela ◽  
CarinaG Colossi ◽  
HenriqueP Freitas ◽  
GiuliaDel Valle ◽  
LúciaC
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional
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