WorldCat Identities

Soufi, Alexandra

Overview
Works: 6 works in 6 publications in 2 languages and 8 library holdings
Roles: Author, Other
Publication Timeline
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Most widely held works by Alexandra Soufi
Red Flags for Maltese Adults with Congenital Heart Disease: Poorer Dental Care and Less Sports Participation Compared to Other European Patients--An APPROACH-IS Substudy by On behalf of the APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD)( )

1 edition published in 2017 in English and held by 2 WorldCat member libraries worldwide

Qualité de vie et état de santé ressenti après une chirurgie de dérivation cavo-pulmonaire totale by Alexandra Soufi( Book )

1 edition published in 2010 in French and held by 2 WorldCat member libraries worldwide

Objectifs : Evaluer la qualité de vie des patients opérés d'une dérivation cavo-pulmonaire totale (DCPT) et déterminer la relation avec des paramètres médicaux et socio-démographiques. Méthodes et résultats : 60 patients adultes (24 femmes, 36 hommes, âgés de 18 à 43 ans), ayant bénéficié d'une chirurgie de DCPT pour correction d'une cardiopathie de type ventricule unique ont répondu au questionnaire SF-36. 46 d'entre eux ont évalué leur qualité de vie à l'aide d'une échelle analogique graduée jusqu'à 10. On considère qu'un score supérieur à 5 correspond à une qualité de vie satisfaisante. Le questionnaire d'auto-évaluation SF-36 comme celui de la qualité de vie explore plusieurs critères relatifs au bien-être. Il informe sur les capacités physiques, les douleurs, la santé mentale et sociale. Les résultats du SF-36 ont été comparés à ceux de la population générale française. La moyenne d'âge lors de la chirurgie est de 15,4 + ou - 8,5 ans. L'ancienneté de la DCPT est en moyenne de 10,4 + ou - 5,9 ans. Les scores du SF-36 d'activité physique et de santé générale perçue sont significativement plus bas que ceux de la population générale. Les patients âgés de 25-34 ans évoquent des difficultés psychologiques qui s'améliorent par la suite grâce à de probables mécanismes d'adaptation. Le stade NYHA et l'activité professionnelle (temps plein, temps partiel, sans activité) sont corrélés significativement aux capacités physiques. Le nombre de médicaments et l'activité professionnelle sont corrélés significativement à l'état psychique. En ce qui concerne la qualité de vie, la moyenne des scores attribués par les patients est à 7,02 % + ou - 1,6. Les déterminants de la qualité de vie sont en rapport avec la santé. Le niveau d'éducation et l'activité professionnelle sont des indicateurs utiles pour évaluer la qualité de vie. Conclusion : Les adultes opérés d'une dérivation cavo-pulmonaire totale déclarent une santé physique altérée. La qualité de vie est dans l'ensemble satisfaisante. Les patients se sont adaptés avec cohérence à leur maladie. Ces résultats incitent à accorder une attention particulière à la transition de l'enfance vers l'âge adulte et à développer un questionnaire mieux adapté à ces patients pour comprendre les facteurs influençant leur qualité de vie
Phenotypes of adults with congenital heart disease around the globe a cluster analysis by Edward Callus( )

1 edition published in 2021 in English and held by 1 WorldCat member library worldwide

OBJECTIVE: To derive cluster analysis-based groupings for adults with congenital heart disease (ACHD) when it comes to perceived health, psychological functioning, health behaviours and quality of life (QoL). METHODS: This study was part of a larger worldwide multicentre study called APPROACH-IS; a cross sectional study which recruited 4028 patients (2013-2015) from 15 participating countries. A hierarchical cluster analysis was performed using Ward's method in order to group patients with similar psychological characteristics, which were defined by taking into consideration the scores of the following tests: Sense Of Coherence, Health Behavior Scale (physical exercise score), Hospital Anxiety Depression Scale, Illness Perception Questionnaire, Satisfaction with Life Scale and the Visual Analogue Scale scores of the EQ-5D perceived health scale and a linear analogue scale (0-100) measuring QoL. RESULTS: 3768 patients with complete data were divided into 3 clusters. The first and second clusters represented 89.6% of patients in the analysis who reported a good health perception, QoL, psychological functioning and the greatest amount of exercise. Patients in the third cluster reported substantially lower scores in all PROs. This cluster was characterised by a significantly higher proportion of females, a higher average age the lowest education level, more complex forms of congenital heart disease and more medical comorbidities. CONCLUSIONS: This study suggests that certain demographic and clinical characteristics may be linked to less favourable health perception, quality of life, psychological functioning, and health behaviours in ACHD. This information may be used to improve psychosocial screening and the timely provision of psychosocial care
Healthcare system inputs and patient-reported outcomes a study in adults with congenital heart defect from 15 countries by Liesbet Van Bulck( )

1 edition published in 2020 in English and held by 1 WorldCat member library worldwide

Background: The relationship between healthcare system inputs (e.g., human resources and infrastructure) and mortality has been extensively studied. However, the association between healthcare system inputs and patient-reported outcomes remains unclear. Hence, we explored the predictive value of human resources and infrastructures of the countries' healthcare system on patient-reported outcomes in adults with congenital heart disease. Methods: This cross-sectional study included 3588 patients with congenital heart disease (median age = 31y; IQR = 16.0; 52% women; 26% simple, 49% moderate, and 25% complex defects) from 15 countries. The following patient-reported outcomes were measured: perceived physical and mental health, psychological distress, health behaviors, and quality of life. The assessed inputs of the healthcare system were: (i) human resources (i.e., density of physicians and nurses, both per 1000 people) and (ii) infrastructure (i.e., density of hospital beds per 10,000 people). Univariable, multivariable, and sensitivity analyses using general linear mixed models were conducted, adjusting for patient-specific variables and unmeasured country differences. Results: Sensitivity analyses showed that higher density of physicians was significantly associated with better self-reported physical and mental health, less psychological distress, and better quality of life. A greater number of nurses was significantly associated with better self-reported physical health, less psychological distress, and less risky health behavior. No associations between a higher density of hospital beds and patient-reported outcomes were observed. Conclusions: This explorative study suggests that density of human resources for health, measured on country level, are associated with patient-reported outcomes in adults with congenital heart disease. More research needs to be conducted before firm conclusions about the relationships observed can be drawn
Geographical variation and predictors of physical activity level in adults with congenital heart disease by Lena Larsson( )

1 edition published in 2019 in English and held by 1 WorldCat member library worldwide

Background: Physical activity is important to maintain and promote health. This is of particular interest in patients with congenital heart disease (CHD) where acquired heart disease should be prevented. The World Health Organization (WHO) recommends a minimum of 2.5 h/week of physical activity exceeding 3 metabolic equivalents(METS) to achieve positive health effects. It is unknown whether physical activity levels (PAL) in adult CHD patients differ by country of origin. Methods: 3896 adults with CHD recruited from 15 countries over 5 continents completed self-reported instruments, including the Health Behaviour Scale (HBS-CHD), within the APPROACH-IS project. For each patient, we calculated whether WHO recommendations were achieved or not. Associated factors were investigated using Generalized Linear Mixed Models. Results: On average, 31% reached the WHO recommendations but with a great variation between geographical areas (India: 10%-Norway: 53%). Predictors for physical activity level in line with the WHO recommendations, with country of residence as random effect, were male sex (OR 1.78, 95%CI 1.52-2.08), NYHA-class I (OR 3.10, 95%CI 1.71-5.62) and less complex disease (OR 1.46, 95%CI 1.16-1.83). In contrast, older age (OR 0.97, 95%CI 0.96-0.98), lower educational level (OR 0.41, 95%CI 0.26-0.64) and being unemployed (OR 0.57, 95%CI 0.42-0.77) were negatively associated with reaching WHO recommendations. Conclusions: A significant proportion of patients with CHD did not reach the WHO physical activity recommendations. There was a large variation in physical activity level by country of origin. Based on identified predictors, vulnerable patients may be identified and offered specific behavioral interventions
Sense of coherence in adults with congenital heart disease in 15 countries Patient characteristics, cultural dimensions and quality of life by Philip Moons( )

1 edition published in 2020 in English and held by 1 WorldCat member library worldwide

Background: Previous studies have found that sense of coherence (SOC) is positively related to quality of life (QoL) in persons with chronic conditions. In congenital heart disease (CHD), the evidence is scant. Aims: We investigated (i) intercountry variation in SOC in a large international sample of adults with CHD; (ii) the relationship between demographic and clinical characteristics and SOC; (iii) the relationship between cultural dimensions of countries and SOC; and (iv) variation in relative importance of SOC in explaining QoL across the countries. Methods: APPROACH-IS was a cross-sectional, observational study, with 4028 patients from 15 countries enrolled. SOC was measured using the 13-item SOC scale (range 13â91) and QoL was assessed by a linear analog scale (range 0â100). Results: The mean SOC score was 65.5±13.2. Large intercountry variation was observed with the strongest SOC in Switzerland (68.8±11.1) and the lowest SOC in Japan (59.9±14.5). A lower SOC was associated with a younger age; lower educational level; with job seeking, being unemployed or disabled; unmarried, divorced or widowed; from a worse functional class; and simple CHD. Power distance index and individualism vs collectivism were cultural dimensions significantly related to SOC. SOC was positively associated with QoL in all participating countries and in the total sample, with an explained variance ranging from 5.8% in Argentina to 30.4% in Japan. Conclusion: In adults with CHD, SOC is positively associated with QoL. The implementation of SOC-enhancing interventions might improve QoL, but strategies would likely differ across countries given the substantial variation in explained variance. © The European Society of Cardiology 2020
 
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