| 1. |
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| 2. |
- Daelman, Bo, et al.
(författare)
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Frailty and cognitive function in middle-aged and older adults with congenital heart disease
- 2024
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Ingår i: Journal of the American College of Cardiology. - : Elsevier. - 0735-1097 .- 1558-3597. ; 83:12, s. 1149-1159
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Tidskriftsartikel (refereegranskat)abstract
- Background: Life expectancy of patients with congenital heart disease (CHD) has increased rapidly, resulting in a growing and aging population. Recent studies have shown that older people with CHD have higher morbidity, health care use, and mortality. To maintain longevity and quality of life, understanding their evolving medical and psychosocial challenges is essential.Objectives: The authors describe the frailty and cognitive profile of middle-aged and older adults with CHD to identify predictor variables and to explore the relationship with hospital admissions and outpatient visits.Methods: Using a cross-sectional, multicentric design, we included 814 patients aged ≥40 years from 11 countries. Frailty phenotype was determined using the Fried method. Cognitive function was assessed by the Montreal Cognitive Assessment.Results: In this sample, 52.3% of patients were assessed as robust, 41.9% as prefrail, and 5.8% as frail; 38.8% had cognitive dysfunction. Multinomial regression showed that frailty was associated with older age, female sex, higher physiologic class, and comorbidities. Counterintuitively, patients with mild heart defects were more likely than those with complex lesions to be prefrail. Patients from middle-income countries displayed more prefrailty than those from higher-income countries. Logistic regression demonstrated that cognitive dysfunction was related to older age, comorbidities, and lower country-level income.Conclusions: Approximately one-half of included patients were (pre-)frail, and more than one-third experienced cognitive impairment. Frailty and cognitive dysfunction were identified in patients with mild CHD, indicating that these concerns extend beyond severe CHD. Assessing frailty and cognition routinely could offer valuable insights into this aging population.
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| 3. |
- Nijs, Jo, et al.
(författare)
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Personalized Multimodal Lifestyle Intervention as the Best-Evidenced Treatment for Chronic Pain: State-of-the-Art Clinical Perspective
- 2024
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Ingår i: JOURNAL OF CLINICAL MEDICINE. - 2077-0383. ; 13:3
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Forskningsöversikt (refereegranskat)abstract
- Chronic pain is the most prevalent disease worldwide, leading to substantial disability and socioeconomic burden. Therefore, it can be regarded as a public health disease and major challenge to scientists, clinicians and affected individuals. Behavioral lifestyle factors, such as, physical (in)activity, stress, poor sleep and an unhealthy diet are increasingly recognized as perpetuating factors for chronic pain. Yet, current management options for patients with chronic pain often do not address lifestyle factors in a personalized multimodal fashion. This state-of-the-art clinical perspective aims to address this gap by discussing how clinicians can simultaneously incorporate various lifestyle factors into a personalized multimodal lifestyle intervention for individuals with chronic pain. To do so the available evidence on (multimodal) lifestyle interventions targeting physical (in)activity, stress, sleep and nutritional factors, specifically, was reviewed and synthetized from a clinical point of view. First, advise is provided on how to design a personalized multimodal lifestyle approach for a specific patient. Subsequently, best-evidence recommendations on how to integrate physical (in)activity, stress, sleep and nutritional factors as treatment targets into a personalized multimodal lifestyle approach are outlined. Evidence supporting such a personalized multimodal lifestyle approach is growing, but further studies are needed.
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| 4. |
- Skogby, Sandra, 1989, et al.
(författare)
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Outpatient volumes and medical staffing resources as predictors for continuity of follow-up care during transfer of adolescents with congenital heart disease
- 2020
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Ingår i: International Journal of Cardiology. - : Elsevier. - 0167-5273 .- 1874-1754. ; 310, s. 51-57
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Providing continuous follow-up care to patients with congenital heart disease (CHD) remains a challenge in many settings. Previous studies highlight that patients with CHD experience discontinuation of follow-up care, but mainly describe a single-centre perspective, neglecting inter-institutional variations. Hospital-related factors above and beyond patient-related factors are believed to affect continuity of care. The present multicentre study therefore investigated (i) proportion of "no follow-up care"; (ii) transfer destinations after leaving paediatric cardiology; (iii) variation in proportions of no follow-up between centres; (iv) the association between no follow-up and outpatient volumes, and (v) its relationship with staffing resources at outpatient clinics.METHODS: An observational, multicentre study was conducted in seven university hospitals. In total, 654 adolescents with CHD, born between 1991 and 1993, with paediatric outpatient visit at age 14-18 years were included. Transfer status was determined 5 years after the intended transfer to adult care (23y), based on medical files, self-reports and registries.RESULTS: Overall, 89.7% of patients were receiving adult follow-up care after transfer; 6.6% had no follow-up; and 3.7% were untraceable. Among patients in follow-up care, only one remained in paediatric care and the majority received specialist adult CHD care. Significant variability in proportions of no follow-up were identified across centres. Higher outpatient volumes at paediatric outpatient clinics were associated with better continued follow-up care after transfer (OR = 1.061; 95% CI = 1.001 - 1.124). Medical staffing resources were not found predictive.CONCLUSION: Our findings support the theory of hospital-related factors influencing continuity of care, above and beyond patient-related characteristics.
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| 5. |
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| 6. |
- Van Bulck, Liesbet, et al.
(författare)
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Patient-reported outcomes of adults with congenital heart disease from eight European countries : scrutinising the association with healthcare system performance
- 2019
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Ingår i: European Journal of Cardiovascular Nursing. - : Sage Publications. - 1474-5151 .- 1873-1953. ; 18:6, s. 465-473
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Tidskriftsartikel (refereegranskat)abstract
- Background: Inter-country variation in patient-reported outcomes of adults with congenital heart disease has been observed. Country-specific characteristics may play a role. A previous study found an association between healthcare system performance and patient-reported outcomes. However, it remains unknown which specific components of the countries’ healthcare system performance are of importance for patient-reported outcomes.Aims: The aim of this study was to investigate the relationship between components of healthcare system performance and patient-reported outcomes in a large sample of adults with congenital heart disease.Methods: A total of 1591 adults with congenital heart disease (median age 34 years; 51% men; 32% simple, 48% moderate and 20% complex defects) from eight European countries were included in this cross-sectional study. The following patient-reported outcomes were measured: perceived physical and mental health, psychological distress, health behaviours and quality of life. The Euro Health Consumer Index 2015 and the Euro Heart Index 2016 were used as measures of healthcare system performance. General linear mixed models were conducted, adjusting for patient-specific variables and unmeasured country differences.Results: Health risk behaviours were associated with the Euro Health Consumer Index subdomains about patient rights and information, health outcomes and financing and access to pharmaceuticals. Perceived physical health was associated with the Euro Health Consumer Index subdomain about prevention of chronic diseases. Subscales of the Euro Heart Index were not associated with patient-reported outcomes.Conclusion: Several features of healthcare system performance are associated with perceived physical health and health risk behaviour in adults with congenital heart disease. Before recommendations for policy-makers and clinicians can be conducted, future research ought to investigate the impact of the healthcare system performance on outcomes further.
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| 7. |
- Van Bulck, Liesbet, et al.
(författare)
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Rationale, design and methodology of APPROACH-IS II: International study of patient-reported outcomes and frailty phenotyping in adults with congenital heart disease.
- 2022
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Ingår i: International journal of cardiology. - : Elsevier BV. - 1874-1754 .- 0167-5273. ; 363, s. 30-39
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Tidskriftsartikel (refereegranskat)abstract
- In recent years, patient-reported outcomes (PROs) have received increasing prominence in cardiovascular research and clinical care. An understanding of the variability and global experience of PROs in adults with congenital heart disease (CHD), however, is still lacking. Moreover, information on epidemiological characteristics and the frailty phenotype of older adults with CHD is minimal. The APPROACH-IS II study was established to address these knowledge gaps. This paper presents the design and methodology of APPROACH-IS II.APPROACH-IS II is a cross-sectional global multicentric study that includes Part 1 (assessing PROs) and Part 2 (investigating the frailty phenotype of older adults). With 53 participating centers, located in 32 countries across six continents, the aim is to enroll 8000 patients with CHD. In Part 1, self-report surveys are used to collect data on PROs (e.g., quality of life, perceived health, depressive symptoms, autonomy support), and explanatory variables (e.g., social support, stigma, illness identity, empowerment). In Part 2, the cognitive functioning and frailty phenotype of older adults are measured using validated assessments.APPROACH-IS II will generate a rich dataset representing the international experience of individuals in adult CHD care. The results of this project will provide a global view of PROs and the frailty phenotype of adults with CHD and will thereby address important knowledge gaps. Undoubtedly, the project will contribute to the overarching aim of improving optimal living and care provision for adults with CHD.
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| 8. |
- Van Hecke, Ann, et al.
(författare)
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Development of a competency framework for advanced practice nurses : A co-design process
- 2024
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Ingår i: Journal of Advanced Nursing. - : John Wiley & Sons. - 0309-2402 .- 1365-2648.
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Tidskriftsartikel (refereegranskat)abstract
- AIMS: The aim of the study was to develop a comprehensive competency framework for advanced practice nurses in Belgium.DESIGN: A co-design development process was conducted.METHODS: This study consisted of two consecutive stages (November 2020-December 2021): (1) developing a competency framework for advanced practice nurses in Belgium by the research team, based on literature and (2) group discussions or interviews with and written feedback from key stakeholders. 11 group discussions and seven individual interviews were conducted with various stakeholder groups with a total of 117 participants.RESULTS: A comprehensive competency framework containing 31 key competencies and 120 enabling competencies was developed based on the Canadian Medical Education Directions for Specialists Competency Framework. These competencies were grouped into seven roles: clinical expert and therapist, organizer of quality care and leader in innovation, professional and clinical leader, collaborator, researcher, communicator and health promoter.CONCLUSION: The developed competency framework has resemblance to other international frameworks. This framework emphasized the independent role of the advanced practice nurse and provided guidance in a clear task division and delegation to other professionals. It can provide a solid foundation for delivering high-quality, patient-centred care by advanced practice nurses in the years to come.IMPLICATIONS FOR THE PROFESSION: This competency framework can guide further development of advanced practice nursing education in Belgium and represents a starting point for future evaluation of its feasibility and usability in education and clinical practice. Advanced practice nurses and healthcare managers can also use the framework as an instrument for personal and professional development, performance appraisal, and further alignment of these function profiles in clinical practice. Finally, this framework can inform and guide policymakers towards legal recognition of advanced practice nursing in Belgium and inspire the development of advanced practice nursing profiles in countries where these profiles are still emerging.IMPACT: What problem did the study address? The absence of a detailed competency framework for advanced practice nurses complicates legal recognition, role clarification and implementation in practice in Belgium. A rigorously developed competency framework could clarify which competencies to integrate in future advanced practice nursing education, mentorship programs and practice. What were the main findings? The competency framework outlined seven roles for advanced practice nurses: clinical expert and therapist, organizer of quality care and leader in innovation, professional and clinical leader, collaborator, researcher, communicator, and health promoter. Differentiation from other expert nursing profiles and clinical autonomy of advanced practice nurses were pivotal. Where and on whom will the research have impact? The comprehensive competency framework for advanced practice nurses and the collaborative methodology used can inspire other countries where these profiles are still emerging. The competency framework can be used as an instrument for role clarification, performance appraisals, continuous professional development, and professional (e-)portfolios. The competency framework can guide policymakers when establishing Belgian's legal framework for advanced practice nurses.REPORTING METHOD: The authors have adhered to CONFERD-HP: recommendations for reporting COmpeteNcy FramEwoRk Development in health professions.PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution in the design of the study. A patient advisory panel commented on the developed competency framework.
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| 9. |
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| 10. |
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| 11. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
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The Scope of Research on Transfer and Transition in Young Persons With Chronic Conditions
- 2019
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Ingår i: Journal of Adolescent Health. - : Elsevier BV. - 1054-139X .- 1879-1972. ; 65:5, s. 581-589
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Tidskriftsartikel (refereegranskat)abstract
- Purpose To determine the amount, type, and evidence level of published literature on transfer and/or transition of young people with chronic conditions (CCs) and to describe the characteristics of such studies. Methods Databases including PubMed, CINAHL, Web of Science, and Scopus were searched for publications in English, French, Spanish, Dutch, or Swedish. Included publications were related to transfer and/or transition of young persons (10–25 years) with a CC. Grey literature was excluded. Region and country where the study was performed, type of study design, study population (i.e., type of CC, sample size, group), and data collection methods were extracted from the studies. Results We included 952 publications for data analysis, of which 790 were quantitative, 128 qualitative, and 34 multimethods or mixed methods studies. Only seven studies were experimental designs, and the majority (n = 341) were categorized as expert opinion or narrative reviews. Endocrinology and neurology were the most common medical specialties involved in the studies, and young persons were the most represented group, while health-care providers were involved the least. Conclusions The majority of publications are categorized at the lowest evidence level. Furthermore, evidence is limited to a certain group of medical specialties.
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| 12. |
- Anguille, Sébastien, et al.
(författare)
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Dendritic cell vaccination as postremission treatment to prevent or delay relapse in acute myeloid leukemia
- 2017
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Ingår i: Blood. - : American Society of Hematology. - 0006-4971 .- 1528-0020. ; 130:15, s. 1713-1721
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Tidskriftsartikel (refereegranskat)abstract
- Relapse is a major problem in acute myeloid leukemia (AML) and adversely affects survival. In this phase 2 study, we investigated the effect of vaccination with dendritic cells (DCs) electroporated with Wilms’ tumor 1 (WT1) messenger RNA (mRNA) as postremission treatment in 30 patients with AML at very high risk of relapse. There was a demonstrable antileukemic response in 13 patients. Nine patients achieved molecular remission as demonstrated by normalization of WT1 transcript levels, 5 of which were sustained after a median follow-up of 109.4 months. Disease stabilization was achieved in 4 other patients. Five-year overall survival (OS) was higher in responders than in nonresponders (53.8% vs 25.0%; P 5 .01). In patients receiving DCs in first complete remission (CR1), there was a vaccine-induced relapse reduction rate of 25%, and 5-year relapse-free survival was higher in responders than in nonresponders (50% vs 7.7%; P < .0001). In patients age £65 and >65 years who received DCs in CR1, 5-year OS was 69.2% and 30.8% respectively, as compared with 51.7% and 18% in the Swedish Acute Leukemia Registry. Long-term clinical response was correlated with increased circulating frequencies of polyepitope WT1-specific CD81 T cells. Long-term OS was correlated with interferon-g1 and tumor necrosis factor-a1 WT1-specific responses in delayed-type hypersensitivity-infiltrating CD81 T lymphocytes. In conclusion, vaccination of patients with AML with WT1 mRNA-electroporated DCs can be an effective strategy to prevent or delay relapse after standard chemotherapy, translating into improved OS rates, which are correlated with the induction of WT1-specific CD81 T-cell response. This trial was registered at www.clinicaltrials.gov as #NCT00965224.
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| 13. |
- Apers, Silke, et al.
(författare)
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Bringing Antonovsky's salutogenic theory to life: A qualitative inquiry into the experiences of young people with congenital heart disease.
- 2016
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Ingår i: International journal of qualitative studies on health and well-being. - : Informa UK Limited. - 1748-2631. ; 11
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Tidskriftsartikel (refereegranskat)abstract
- Antonovsky coined sense of coherence (SOC) as the central concept of his salutogenic theory focusing on the origins of well-being. SOC captures the degree to which one perceives the world as comprehensible, manageable, and meaningful. Life events and resources are considered to be the building blocks of a person's SOC. However, mainly quantitative studies have looked into the role of life events and resources. Therefore, the present study aims to gain a deeper insight into the experiences of patients with congenital heart disease (CHD) regarding resources and life events.
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| 14. |
- Apers, Silke, et al.
(författare)
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Sense of Coherence in Young People With Congenital Heart Disease.
- 2015
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Ingår i: Journal of developmental and behavioral pediatrics : JDBP. - 1536-7312. ; 36:4, s. 267-276
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Tidskriftsartikel (refereegranskat)abstract
- Patient-reported outcomes (PROs) have been found to play a role in the development of clinical complications. Hence, it is crucial to understand why some patients do well in terms of PROs and others do not and to identify these groups of patients. Sense of coherence (SOC), capturing a person's outlook on life, is associated with PROs in adolescents with congenital heart disease (CHD). Therefore, we (1) examine how SOC develops in young people with CHD, (2) identify subgroups of SOC development, and (3) characterize subgroups in terms of demographic and clinical variables and PROs.
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| 15. |
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| 16. |
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| 17. |
- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Optimal transition - nurses view.
- 2014
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Ingår i: 48th Annual meeting of the European Association of Pediatric and Congenital Cardiology (AEPC). 22 maj 2014. Helsingfors, Finland..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)
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| 18. |
- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Patient-Reported Health in Young People With Congenital Heart Disease Transitioning to Adulthood
- 2015
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Ingår i: Journal of Adolescent Health. - : Elsevier BV. - 1054-139X. ; 57:6, s. 658-665
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Because life expectancy of patients with congenital heart disease (CHD) has substantially, assessment of patient-reported health is seen as an important component in the follow-up. Therefore, we (1) examined patient-reported health status of young people with CHD from a longitudinal perspective; (2) compared patient-reported health of patients with that of controls from the general population; and (3) investigated longitudinal interrelationships among various domains of patient-reported health. Methods: We included 429 patients with CHD (aged 14e18 years) in a longitudinal study with four measurement points. Patient-reported health status was measured using a linear analog scale for self-rated health and the Pediatric Quality of Life Inventory (PedsQL). Results: Self-rated health was good, with mean scores that slightly decreased from 81.78 to 78.90 from Time 1 to Time 4. PedsQL scores were also good, with the highest scores obtained for physical functioning. Patients with mild heart defects consistently reported higher scores on self-rated health and PedsQL than the general population. The scores of patients with complex heart de- fects were generally lower than those of the general population. Cross-lagged path analyses demonstrated that symptoms, cognitive functioning, and communication problems constituted the most consistent predictors of perceived health domains over time. Conclusions: Patient-reported health was considerably good. Domains of patient-reported health that deserve specific attention are symptoms, cognitive functioning, and communication problems. Intervening in these three domains may yield indirect benefits on other health status domains and may improve the overall perceived health status of young people with CHD.
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| 19. |
- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Scrutinizing Patient-Reported Health Status in Young People with Congenital Heart Disease
- 2015
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Ingår i: 18th Annual Update on Pediatric and Congenital Cardiovascular Disease - Challenges and Dilemmas. Feb 11-15, 2015. Scottsdale, Arizona, US..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Purpose: To examine the patient-reported health status of young people with congenital heart disease (CHD) from a longitudinal perspective; to compare the patient-reported health of young people with CHD to that of healthy peers; and to investigate the longitudinal interrelationships among the various domains of patient-reported health. Conceptual framework: Assessment of patient-reported health is important in the long-term follow-up. Methods: Design: Longitudinal, observational study with 4 measurements and 9 months intervals. Setting: Tertiary care center in Belgium. Sample: 429 young people with CHD aged 14-18 years. Instruments: A Linear Analogue Scale (LAS) and the Pediatric Quality of Life Inventory (PedsQL). Analysis: Repeated measures ANOVA and cross-lagged analysis. Major findings: Self-rated health was good, with mean LAS scores that slightly decreased from 81.78 to 78.90 over 27 months (F=13.33;P<.001). PedsQL scores were also good, with the highest scores obtained for physical functioning (range 86.24-87.04). A significant deterioration over time was observed for emotional functioning (F=5.81;P<.001); a significant improvement was found for cognitive problems (F=4.941;P<.01) and communication (F=4.51;P<.01). Patients with mild heart defects consistently reported higher scores than the general population. Scores of patients with complex defects were generally lower than those of the general population. Cross-lagged analyses demonstrated that symptoms, cognitive functioning and communication problems constituted the most consistent predictors of perceived health domains over time (P<.01). Conclusions: Patient-reported health in young people with CHD was considerable high. Domains that deserve specific attention are symptoms, cognitive functioning and communication problems. Implications of study: Interventions that focus on improving these three domains may yield indirect benefits on other health status domains as well as improve the overall perceived health status.
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| 20. |
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| 21. |
- Gabriels, Charlien, et al.
(författare)
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Serial pulmonary vascular resistance assessment in patients late after ventricular septal defect repair.
- 2019
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Ingår i: International journal of cardiology. - : Elsevier BV. - 1874-1754 .- 0167-5273. ; 282, s. 38-43
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Tidskriftsartikel (refereegranskat)abstract
- The long-term evolution of pulmonary vascular resistance (PVR) after ventricular septal defect (VSD) repair is unknown. This study serially evaluated resting and exercise PVR after VSD repair in childhood.Patients were enrolled from the outpatient Adult Congenital Heart Disease clinic of the University Hospitals Leuven and compared to age- and gender-matched controls. Participants underwent resting and exercise echocardiography and cardiopulmonary exercise testing at baseline and follow-up. Total PVR was calculated as the ratio of mean pulmonary artery pressure (mPAP) to cardiac output (CO). The slope of the mPAP-CO curve (exercise PVR) was obtained using linear regression analysis.Twenty-seven patients (mean age 31±7years, 70% male) and 18 controls were included. At baseline, patients had larger right ventricular (RV) end-diastolic areas (10±2 vs 9±1cm2/m2, p=0.001) and lower tricuspid annular plane systolic excursion (TAPSE) (17 (17-19) vs 26 (22-28) mm, p<0.001). After 1.1 (1.0-1.5) years follow-up, similar differences in RV areas and TAPSE were found. Patients reached lower peak workload and cardiac index compared to controls at each time point. Peak total PVR was higher (Baseline: 2.7±0.8 vs 2.2±0.3mmHg/L/min, p=0.005; Follow-up: 2.9±0.9 vs 2.1±0.3mmHg/L/min, p<0.001) and the mPAP-CO slope was steeper (Baseline: 2.2±0.8 vs 1.7±0.3mmHg/L/min, p=0.008; Follow-up: 2.5±0.9 vs 1.6±0.3mmHg/L/min, p<0.001) in patients. The mPAP-CO slope in patients correlated inversely with peak oxygen uptake (R=-0.41 and-0.45, p=0.036 and 0.022, baseline and follow-up, respectively).Despite repair, VSD patients seem to show altered pulmonary hemodynamics and RV impairment at rest and exercise, supporting life-long follow-up.
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| 22. |
- Goossens, Dirk, et al.
(författare)
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Simultaneous mutation and copy number variation (CNV) detection by multiplex PCR-based GS-FLX sequencing.
- 2009
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Ingår i: Human Mutation. - : Hindawi Limited. - 1059-7794 .- 1098-1004. ; 30:3, s. 472-6
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Tidskriftsartikel (refereegranskat)abstract
- We evaluated multiplex PCR amplification as a front-end for high-throughput sequencing, to widen the applicability of massive parallel sequencers for the detailed analysis of complex genomes. Using multiplex PCR reactions, we sequenced the complete coding regions of seven genes implicated in peripheral neuropathies in 40 individuals on a GS-FLX genome sequencer (Roche). The resulting dataset showed highly specific and uniform amplification. Comparison of the GS-FLX sequencing data with the dataset generated by Sanger sequencing confirmed the detection of all variants present and proved the sensitivity of the method for mutation detection. In addition, we showed that we could exploit the multiplexed PCR amplicons to determine individual copy number variation (CNV), increasing the spectrum of detected variations to both genetic and genomic variants. We conclude that our straightforward procedure substantially expands the applicability of the massive parallel sequencers for sequencing projects of a moderate number of amplicons (50-500) with typical applications in resequencing exons in positional or functional candidate regions and molecular genetic diagnostics.
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| 23. |
- Goossens, Eva, et al.
(författare)
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Are missed appointments in an outpatient clinic for adults with congenital heart disease the harbinger for care gaps?
- 2022
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Ingår i: European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology. - : Oxford University Press (OUP). - 1873-1953. ; 21:2, s. 127-134
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Tidskriftsartikel (refereegranskat)abstract
- Life-long follow-up is vital for patients with congenital heart disease (CHD) to safeguard longevity. Missing scheduled appointments might be prodromal to subsequent care gaps, but our understanding of their occurrence and impact is limited. This study determined the occurrence and predictors of missed appointments (MA), assess its predictive value for care gaps, and explored if MA or care gaps are associated with increased mortality.From 2007 to 2009, the occurrence of MA in 2075 CHD patients was documented at an adult CHD clinic. The frequency of outpatient visits in 1363 adults with moderate to complex CHD was calculated from 2009 to 2012. Patients without a visit were considered to have a care gap. Data on mortality were collected from 2013 to 2017. Missed appointments occurred in 11% of patients and were more common in men [odds ratio (OR)=1.57; 95% confidence interval (CI): 1.18-2.08], without a history of cardiac procedures (OR=1.46; 95% CI: 1.08-1.97), and for morning visits (OR=1.45; 95% CI: 1.10-1.92). Care gaps were identified in 6% of moderate to complex CHD. A MA was significantly associated with an increased likelihood of care gaps (OR=19.55; 95% CI: 11.92-32.07; R2 = 26.5%). In moderate to complex CHD, no difference in mortality rates was related to the occurrence of discontinued care.The occurrence of MA was related to patients' gender, no history of cardiac interventions, and time of day of the outpatient visits. Care gaps were associated by the preceding MA. No association with increased mortality rates was observed. Interventions reducing missed appointments, such as SMS-reminders prior to visits, need investigation.
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| 24. |
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| 25. |
- Goossens, Eva, et al.
(författare)
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Implementation of the American College of Cardiology/American Heart Association 2008 Guidelines for the Management of Adults With Congenital Heart Disease.
- 2015
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Ingår i: American Journal of Cardiology. - : Elsevier BV. - 0002-9149. ; 116:3, s. 452-457
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Tidskriftsartikel (refereegranskat)abstract
- Although different guidelines on adult congenital heart disease (ACHD) care advocate for lifetime cardiac follow-up, a critical appraisal of the guideline implementation is lacking. We investigated the implementation of the American College of Cardiology/American Heart Association 2008 guidelines for ACHD follow-up by investigating the type of health care professional, care setting, and frequency of outpatient visits in young adults with CHD. Furthermore, correlates for care in line with the recommendations or untraceability were investigated. A cross-sectional observational study was conducted, including 306 patients with CHD who had a documented outpatient visit at pediatric cardiology before age 18years. In all, 210 patients (68.6%) were in cardiac follow-up; 20 (6.5%) withdrew from follow-up and 76 (24.9%) were untraceable. Overall, 198 patients were followed up in tertiary care, 1/4 (n= 52) of which were seen at a formalized ACHD care program and 3/4 (n= 146) remained at pediatric cardiology. Of those followed in formalized ACHD and pediatric cardiology care, the recommended frequency was implemented in 94.2% and 89%, respectively (p= 0.412). No predictors for the implementation of the guidelines were identified. Risk factors for becoming untraceable were none or lower number of heart surgeries, health insurance issues, and nonwhite ethnicity. In conclusion, a significant number of adults continue to be cared for by pediatric cardiologists, indicating that transfer to adult-oriented care was not standard practice. Frequency of follow-up for most patients was in line with the ACC/AHA 2008 guidelines. A considerable proportion of young adults were untraceable in the system, which makes them vulnerable for discontinuation of care.
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| 26. |
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| 27. |
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| 28. |
- Goossens, Eva, et al.
(författare)
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Predictors of Care Gaps in Adolescents With Complex Chronic Condition Transitioning to Adulthood.
- 2016
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Ingår i: Pediatrics. - : American Academy of Pediatrics (AAP). - 1098-4275 .- 0031-4005. ; 137:4
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Tidskriftsartikel (refereegranskat)abstract
- Breaks in the delivery of health care (ie, [health]care gaps) occur in a large proportion of young people transitioning to adulthood. Developing interventions that prevent adolescents from dropping out of the medical system, as they leave pediatric care, requires an understanding of determinants of care gaps.
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| 29. |
- Hulstaert, Eva, et al.
(författare)
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Contact dermatitis caused by a new rubber compound detected in canvas shoes
- 2018
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Ingår i: Contact Dermatitis. - : Wiley. - 0105-1873. ; 78:1, s. 12-17
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: In 2015 and 2016, female patients in Flanders consulted a dermatologist because they developed skin lesions after wearing a specific brand of canvas shoes.OBJECTIVES: To identify the culprit allergen in the shoes.METHODS: Eighteen young females aged 14-22 years presented with itching and erythematous to purple-coloured eczematous lesions on both feet. They were patch tested by 10 dermatologists with the European baseline series. Some patients underwent testing with additional series. Pieces of the shoe fabrics were tested in 11 of 18 patients. Chemical analysis of the shoe materials was performed. Finally, patients were tested with a thin-layer chromatogram of the shoe extracts and dilutions of the suspected rubber compound.RESULTS: All 18 patients showed positive reactions to thiuram mix. Ten of 11 patients reacted to a piece of shoe fabric. Chemical analysis showed the presence of dimethylthiocarbamylbenzothiazole sulfide (DMTBS). No thiurams were detected. Four patients tested with the chromatogram developed positive reactions to DMTBS. Positive reactions to low concentrations were observed in the 4 patients tested with a DMTBS dilution series; one patient reacted to 0.00001% in acetone.CONCLUSIONS: DMTBS, the culprit allergen, is a component formed during rubber vulcanization that probably cross-reacts with the thiuram mix.
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| 30. |
- Janssens, Astrid, et al.
(författare)
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Exploring the relationship between disease-related knowledge and health risk behaviours in young people with congenital heart disease.
- 2016
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Ingår i: European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology. - : Oxford University Press (OUP). - 1873-1953. ; 15:4, s. 231-240
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Tidskriftsartikel (refereegranskat)abstract
- In order to prevent cardiac complications, young people with congenital heart disease (CHD) should conduct heart-healthy behaviours. Therefore, they are assumed to have a good understanding of their disease. However, empirical data on the relationship between disease-related knowledge and health behaviours in this population is lacking.
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| 31. |
- Khatib, Rani, et al.
(författare)
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Evaluating the Extent of Patient-Centred Care in a Selection of ESC Guidelines
- 2020
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Ingår i: European Heart Journal - Quality of Care and Clinical Outcomes. - : Oxford University Press. - 2058-5225 .- 2058-1742. ; 6:1, s. 55-61
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Patient-centred care (PCC) is the cornerstone for healthcare professionals (HCP) to promote high quality care for patients with cardiovascular conditions. It is defined as 'Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions'. PCC can improve patient outcomes and allow patients and HCP to manage care collaboratively using best available evidence. However, there is no clear understanding how extensively these guidelines incorporate PCC recommendations. The aim of the study was to evaluate the incorporation of PCC into a selection of guidelines published by the European Society of Cardiology (ESC).METHODS: Using a narrative literature review and expert consensus, the Science Committee within the Cardiovascular Nursing and Allied Professions (ACNAP) developed a checklist to determine PCC incorporation in clinical guidelines. Nine ESC guidelines were reviewed evaluated with committee members independently evaluating five PCC aspects: patient voice & involvement, multidisciplinary involvement, holistic care recommendations, flexibility to meet patients' needs, and provision of patient tools. The level of congruence in item ratings by experts was then compared.RESULTS: The incorporation of PCC using these respective five categories, ranged from 4% (patient tools) to 53% in the 'multidisciplinary involvement' category.CONCLUSIONS: Overall, the inclusion of PCC was low, indicating that patient perspectives and needs were less likely to be taken into account when developing, endorsing or formulating recommendations. Future development of guidelines should ensure better incorporation of patients' perspective, in particular, and other PCC aspects highlighted in this study.
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| 32. |
- Laxminarayan, Ramanan, et al.
(författare)
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Antibiotic resistance-the need for global solutions
- 2013
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Ingår i: The Lancet - Infectious diseases. - 1473-3099 .- 1474-4457. ; 13:12, s. 1057-1098
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Tidskriftsartikel (refereegranskat)abstract
- The causes of antibiotic resistance are complex and include human behaviour at many levels of society; the consequences affect everybody in the world. Similarities with climate change are evident. Many efforts have been made to describe the many different facets of antibiotic resistance and the interventions needed to meet the challenge. However, coordinated action is largely absent, especially at the political level, both nationally and internationally. Antibiotics paved the way for unprecedented medical and societal developments, and are today indispensible in all health systems. Achievements in modern medicine, such as major surgery, organ transplantation, treatment of preterm babies, and cancer chemotherapy, which we today take for granted, would not be possible without access to effective treatment for bacterial infections. Within just a few years, we might be faced with dire setbacks, medically, socially, and economically, unless real and unprecedented global coordinated actions are immediately taken. Here, we describe the global situation of antibiotic resistance, its major causes and consequences, and identify key areas in which action is urgently needed.
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| 33. |
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| 34. |
- Luyckx, Koen, et al.
(författare)
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Development and persistence of depressive symptoms in adolescents with CHD.
- 2016
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Ingår i: Cardiology in the young. - 1467-1107. ; 26:6, s. 1115-22
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Tidskriftsartikel (refereegranskat)abstract
- Patients with CHD are vulnerable to psychiatric disorders. The present study compared baseline depressive symptoms between adolescents with CHD and community adolescents, and also assessed the development and persistence of depressive symptoms in patients. We examined the implications of persistent depressive symptoms towards quality of life and patient-reported health. In total, 296 adolescents with CHD participated in a four-wave longitudinal study, with 9-month intervals, and completed measures of depressive symptoms - Center for Epidemiologic Studies Depression Scale (CES-D) - at time points one to four and of quality of life - linear analogue scale (LAS) - and patient-reported health - LAS and Pediatric Quality of Life Inventory - at T (time) 4. Information about diagnosis, disease complexity, and previous heart surgery was collected from medical records. At T1, 278 patients were matched 1:1 with community adolescents, based on sex and age. The findings of this study indicate that patients scored significantly lower on depressive symptoms compared with community adolescents. Depressive symptoms in the total patient sample were stable over time and were unrelated to disease complexity. Based on conventional cut-off scores of the CES-D, substantial individual differences existed in the extent to which depressive symptoms persisted over time: 12.2% of the patients reported elevated depressive symptoms at minimally three out of the four time points. Especially physical functioning, cardiac symptoms, and patient-reported health at T4 were predicted by persistent depressive symptoms, even when controlling for the level of depressive symptoms at T4. Our findings indicate that those involved in the care of adolescents with CHD should remain vigilant to persistent depressive symptoms and arrange timely referral to mental healthcare services.
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| 35. |
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| 36. |
- Moons, Philip, 1968, et al.
(författare)
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Discontinuity of Cardiac Follow-Up in Young People With Congenital Heart Disease Transitioning to Adulthood: A Systematic Review and Meta-Analysis.
- 2021
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Ingår i: Journal of the American Heart Association. - 2047-9980. ; 10:6
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Tidskriftsartikel (refereegranskat)abstract
- Background The majority of people born with congenital heart disease require lifelong cardiac follow-up. However, discontinuity of care is a recognized problem and appears to increase around the transition to adulthood. We performed a systematic review and meta-analysis to estimate the proportion of adolescents and emerging adults with congenital heart disease discontinuing cardiac follow-up. In pooled data, we investigated regional differences, disparities by disease complexity, and the impact of transition programs on the discontinuity of care. Methods and Results Searches were performed in PubMed, Embase, Cinahl, and Web of Science. We identified 17 studies, which enrolled 6847 patients. A random effects meta-analysis of single proportions was performed according to the DerSimonian-Laird method. Moderator effects were computed to explore sources for heterogeneity. Discontinuity proportions ranged from 3.6% to 62.7%, with a pooled estimated proportion of 26.1% (95% CI, 19.2%-34.6%). A trend toward more discontinuity was observed in simple heart defects (33.7%; 95% CI, 15.6%-58.3%), compared with moderate (25.7%; 95% CI, 15.2%-40.1%) or complex congenital heart disease (22.3%; 95% CI, 16.5%-29.4%) (P=0.2372). Studies from the United States (34.0%; 95% CI, 24.3%-45.4%), Canada (25.7%; 95% CI, 17.0%-36.7%), and Europe (6.5%; 95% CI, 5.3%-7.9%) differed significantly (P=0.0004). Transition programs were shown to have the potential to reduce discontinuity of care (12.7%; 95% CI, 2.8%-42.3%) compared with usual care (36.2%; 95% CI, 22.8%-52.2%) (P=0.1119). Conclusions This meta-analysis showed that there is a high proportion of discontinuity of care in young people with congenital heart disease. The highest discontinuity proportions were observed in studies from the United States and in patients with simple heart defects. It is suggested that transition programs have a protective effect. Registration URL: www.crd.york.ac.uk/prospero. Unique identifier: CRD42020182413.
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| 37. |
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| 38. |
- Moons, Philip, 1968, et al.
(författare)
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How do we improve patient knowledge
- 2014
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Ingår i: Annual Program on Congenital Heart Disease in the Adult: An International Symposium, Cincinnati summit June 10-13, 2014.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)
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| 39. |
- Moons, Philip, 1968, et al.
(författare)
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Influenza vaccination in congenital heart disease in the pre-COVID19 era: Coverage rate, patient characteristics and outcome.
- 2021
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Ingår i: The Canadian journal of cardiology. - : Elsevier BV. - 1916-7075 .- 0828-282X. ; 37:9, s. 1472-1479
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Tidskriftsartikel (refereegranskat)abstract
- Influenza vaccination is the most commonly recommended immune prevention strategy. However, data on influenza vaccination in patients with congenital heart disease (CHD) is scarce. In this study, our goals were to (i) measure vaccination coverage rates (VCR) for influenza in a large cohort of children, adolescents and adults with CHD, (ii) identity patient characteristics as predictors for vaccination, and (iii) investigate the impact of influenza vaccination on hospitalization.A nationwide cohort study in Belgium included 16,778 patients, representing 134,782 vaccination years, from the BELgian COngenital heart disease Database combining Administrative and Clinical data (BELCODAC). Data over 9 vaccination years (2006-2015) were used, and patients were stratified into five age cohorts: 6 months-4 years; 5-17 years; 18-49 years; 50-64 years; and ≥65 years.In the respective age cohorts, the VCR was estimated to be 6.6%, 8.0%, 23.9%, 46.6%, and 72.8%. There was a steep increase in VCR as of the age of 40 years. Multivariable logistic regression showed that higher anatomical complexity of CHD, older age, presence of genetic syndromes, and prior cardiac interventions were associated with significantly higher VCRs. Among adults, men had lower and pregnant women had higher VCRs. The association between influenza vaccination and all-cause hospitalization was not significant in this study.The influenza VCR in people with CHD is low, especially in children and adolescents. Older patients, particularly those with complex CHD, are well covered. Our findings should inform vaccination promotion strategies in populations with CHD.
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| 40. |
- Moons, Philip, 1968, et al.
(författare)
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Rapid reviews: the pros and cons of an accelerated review process.
- 2021
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Ingår i: European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology. - : Oxford University Press (OUP). - 1873-1953. ; 20:5, s. 515-519
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Tidskriftsartikel (refereegranskat)abstract
- Although systematic reviews are the method of choice to synthesize scientific evidence, they can take years to complete and publish. Clinicians, managers, and policy-makers often need input from scientific evidence in a more timely and resource-efficient manner. For this purpose, rapid reviews are conducted. Rapid reviews are performed using an accelerated process. However, they should not be less systematic than standard systematic reviews, and the introduction of bias must be avoided. In this article, we describe what rapid reviews are, present their characteristics, give some examples, highlight potential pitfalls, and draw attention to the importance of evidence summaries in order to facilitate adoption in clinical decision-making.
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| 41. |
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| 42. |
- Moons, Philip, 1968, et al.
(författare)
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The COVID-19 pandemic as experienced by adults with congenital heart disease from Belgium, Norway, and South Korea: impact on life domains, patient-reported outcomes, and experiences with care.
- 2022
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Ingår i: European journal of cardiovascular nursing. - : Oxford University Press (OUP). - 1873-1953 .- 1474-5151. ; 21:6, s. 620-629
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Tidskriftsartikel (refereegranskat)abstract
- The coronavirus disease-2019 (COVID-19) pandemic poses significant challenges to many groups within societies, and especially for people with chronic health conditions. It is, however, unknown whether and how the pandemic has thus far affected the physical and mental health of patient populations. Therefore, we investigated how the pandemic affected the lives of adults with congenital heart disease (CHD), compared pre- and peri-pandemic patient-reported outcome measures (PROMs) and a patient-reported experience measure (PREM), and investigated whether having had COVID-19 impacted pre-/peri-pandemic differences of the PROMs and PREM.As part of the ongoing APPROACH-IS II project, we longitudinally surveyed 716 adults with CHD from Belgium, Norway, and South Korea. Pre-pandemic measures were administered from August 2019 to February 2020 and the peri-pandemic surveys were completed September 2020-April 2021. The majority of patients indicated that their social lives (80%), mental health (58%), and professional lives/education (51%) were negatively impacted by the pandemic. Patients felt worried (65%), were afraid (55%), reported the pandemic felt 'close' to them (53%), and were stressed (52%). However, differences between pre- and peri-pandemic scores on the PROMs and PREM were negligibly small (Cohen's d < 0.20). Across measures, 5.8-15.8% of patients demonstrated changes (improved or worsened scores) that exceeded the minimal clinically important difference. There were no difference-in-differences for PROMs and PREM between patients who did vs. did not have COVID-19.Although the COVID-19 pandemic has been disruptive in many ways, pre- to peri-pandemic changes in PROMs and PREM of adults with CHD were negligibly small.
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| 43. |
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| 44. |
- Moons, Philip, 1968, et al.
(författare)
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Transition to adulthood and transfer to adult care of adolescents with congenital heart disease: a global consensus statement of the ESC Association of Cardiovascular Nursing and Allied Professions (ACNAP), the ESC Working Group on Adult Congenital Heart Disease (WG ACHD), the Association for European Paediatric and Congenital Cardiology (AEPC), the Pan-African Society of Cardiology (PASCAR), the Asia-Pacific Pediatric Cardiac Society (APPCS), the Inter-American Society of Cardiology (IASC), the Cardiac Society of Australia and New Zealand (CSANZ), the International Society for Adult Congenital Heart Disease (ISACHD), the World Heart Federation (WHF), the European Congenital Heart Disease Organisation (ECHDO), and the Global Alliance for Rheumatic and Congenital Hearts (Global ARCH)
- 2021
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Ingår i: European Heart Journal. - : Oxford University Press (OUP). - 0195-668X .- 1522-9645. ; 42:41, s. 4213-4223
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Tidskriftsartikel (refereegranskat)abstract
- The vast majority of children with congenital heart disease (CHD) in high-income countries survive into adulthood. Further, paediatric cardiac services have expanded in middle-income countries. Both evolutions have resulted in an increasing number of CHD survivors. Expert care across the life span is necessitated. In adolescence, patients transition from being a dependent child to an independent adult. They are also advised to transfer from paediatrics to adult care. There is no universal consensus regarding how transitional care should be provided and how the transfer should be organized. This is even more challenging in countries with low resources. This consensus document describes issues and practices of transition and transfer of adolescents with CHD, accounting for different possibilities in high-, middle-, and low-income countries. Transitional care ought to be provided to all adolescents with CHD, taking into consideration the available resources. When reaching adulthood, patients ought to be transferred to adult care facilities/providers capable of managing their needs, and systems have to be in place to make sure that continuity of high-quality care is ensured after leaving paediatric cardiology.
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| 45. |
- Moons, Philip, 1968, et al.
(författare)
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Why is transfer to adult care so hard?
- 2015
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Ingår i: 18th Annual Update on Pediatric and Congenital Cardiovascular Disease - Challenges and Dilemmas. Feb 11-15, 2015. Scottsdale, ARizona, US..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)
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| 46. |
- Na, Inwon, et al.
(författare)
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Absence from work or school in young adults with congenital heart disease: is illness identity associated with absenteeism?
- 2022
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Ingår i: European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology. - : Oxford University Press (OUP). - 1873-1953. ; 21:5, s. 491-498
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Tidskriftsartikel (refereegranskat)abstract
- Absence from work or school in patients with congenital heart disease (CHD) is an understudied domain. Illness identity, which is the degree to which a chronic illness is integrated into one's identity, could be hypothesized to be a predictor for absenteeism. This study determined the proportion of young adults with CHD absent from work or school and examined if illness identity dimensions were related to absenteeism.In a cross-sectional study, we included 255 patients with CHD. Data on absence from work or school over the past 12 months were obtained using self-report. The Illness Identity Questionnaire was used, which comprises four illness identity dimensions: rejection, engulfment, acceptance, and enrichment. Linear models with doubly robust estimations were computed after groups were balanced using propensity weighting. Absence from work/school occurred in 69% of young adults with CHD. Absence because of CHD specifically was present in 15% of the patients. Engulfment was significantly related to both all-cause absence and absence for CHD reasons.Patients who strongly define themselves in terms of their heart disease were more likely to be absent from work or school than those who did not. If this finding can be confirmed in future research, it has the potential to be a target for intervention to influence work/school absence.
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| 47. |
- Ombelet, Fouke, et al.
(författare)
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Creating the BELgian COngenital heart disease database combining administrative and clinical data (BELCODAC): Rationale, design and methodology.
- 2020
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Ingår i: International journal of cardiology. - : Elsevier BV. - 1874-1754 .- 0167-5273. ; 316, s. 72-8
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Tidskriftsartikel (refereegranskat)abstract
- Congenital heart disease (CHD) entails a broad spectrum of malformations with various degrees of severity and prognosis. Consequently, new and specific healthcare needs are emerging, requiring responsive healthcare provision. Research on this matter is predominantly performed on population-based databases, to inform clinicians, researchers and policy-makers on health outcomes and economic burden of CHD. Most databases contain data either from administrative sources or from clinical systems. We describe the methodological design of the BELgian COngenital Heart Disease Database combining Administrative and Clinical data (BELCODAC), to investigate patients with CHD.Data on clinical characteristics from three university hospitals in Belgium (Leuven, Ghent and Brussels) were merged with mortality and socio-economic data from the official Belgian statistical office (StatBel), and with healthcare use data from the InterMutualistic Agency, an overarching national organization that collects data from the seven sickness funds for all Belgian citizens. Over 60 variables with multiple entries over time are included in the database.BELCODAC contains data on 18,510 patients, of which 8926 patients (48%) have a mild, 7490 (41%) a moderately complex and 2094 (11%) a complex anatomical heart defect. The most prevalent diagnosis is Ventricular Septal Defect in 3879 patients (21%), followed by Atrial Septal Defect in 2565 patients (14%).BELCODAC comprises longitudinal data on patients with CHD in Belgium. This will help build evidence-based provision of care to the changing CHD population.
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| 48. |
- Ombelet, Fouke, et al.
(författare)
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Newly Developed Adult Congenital Heart Disease Anatomic and Physiological Classification: First Predictive Validity Evaluation.
- 2020
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Ingår i: Journal of the American Heart Association. - 2047-9980. ; 9:5
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Tidskriftsartikel (refereegranskat)abstract
- Background Risk stratification for adults with congenital heart disease is usually based on the anatomic complexity of the patients' defect. The 2018 American Heart Association/American College of Cardiology guidelines for the management of adults with congenital heart disease proposed a new classification scheme, combining anatomic complexity and current physiological stage of the patient. We aimed to investigate the capacity of the Adult Congenital Heart Disease Anatomic and Physiological classification to predict 15-year mortality. Methods and Results Data on 5 classification systems were collected for 629 patients at the outpatient clinic for a previous study. After 15 years, data on mortality were obtained through medical record review. For this assessment, we additionally collected information on physiological state to determine the Adult Congenital Heart Disease Anatomic and Physiological classification. Harrell's concordance statistics index, obtained through a univariate Cox proportional hazards regression, was 0.71 (95% CI, 0.63-0.78) for the Adult Congenital Heart Disease Anatomic and Physiological classification. Harrell's concordance statistics index of the congenital heart disease anatomic component only was 0.67 (95% CI, 0.60-0.74). The highest Harrell's concordance statistics index was obtained for the anatomic complexity in combination with the Congenital Heart Disease Functional Index (0.79; 95% CI, 0.73-0.84). Conclusions This first investigation of the Adult Congenital Heart Disease Anatomic and Physiological classification system provides empirical support for adding the physiological component to the anatomic complexity in the prediction of 15-year cardiac mortality.
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| 49. |
- Ombelet, Fouke, et al.
(författare)
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Predicting 15-Year Mortality in Adults With Congenital Heart Disease Using Disease Severity and Functional Indices.
- 2019
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Ingår i: The Canadian journal of cardiology. - : Elsevier BV. - 1916-7075 .- 0828-282X. ; 35:7, s. 907-913
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Tidskriftsartikel (refereegranskat)abstract
- Disease severity and functional indices are widely used for risk stratification of patients with congenital heart disease (CHD). The predictive value of these classification systems for assessing long-term mortality is unknown. We aimed to determine and compare the predictive value of disease severity and functional indices for 15-year mortality in adults with CHD.Between 2000 and 2002, we categorized 629 patients with CHD (median age, 24 years; 60% were men) on 5 indices: disease complexity scores based on criteria of Task Force 1 of the 32nd Bethesda Conference; Disease Severity Index; New York Heart Association functional class; Ability Index; and Congenital Heart Disease Functional Index (CHDFI). Harrell's concordance statistics index (C-index) was calculated for each classification system through Cox hazard regression analysis to evaluate their performance on predicting all-cause and cardiac mortality over the subsequent 15 years.Over the 15-year follow-up period, 40 patients died, resulting in a mortality rate of 4.56 per 1000 person-years. The CHDFI showed the highest discrimination ability for all-cause mortality (C-index= 0.74; P < 0.001) and cardiac mortality (C-index= 0.76; P < 0.001). The C-index for the other classifications ranged from 0.58 to 0.71 for all-cause mortality and 0.55 to 0.67 for cardiac mortality. The CHDFI showed statistical superiority toward the Disease Severity Index (P<0.01).These results suggest that the Task Force 1 of the 32nd Bethesda Conference, New York Heart Association functional class, Ability Index, and CHDFI could aid in predicting long-term mortality. The CHDFI demonstrated the highest discrimination ability and emphasizes the importance to integrate both anatomic and physiological variables to predict long-term mortality.
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| 50. |
- Oris, Leen, et al.
(författare)
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Illness Identity in Adults with a Chronic Illness.
- 2018
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Ingår i: Journal of clinical psychology in medical settings. - : Springer Science and Business Media LLC. - 1573-3572 .- 1068-9583. ; 25:4, s. 429-440
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Tidskriftsartikel (refereegranskat)abstract
- The present study examines the concept of illness identity, the degree to which a chronic illness is integrated into one's identity, in adults with a chronic illness by validating a new self-report questionnaire, the Illness Identity Questionnaire (IIQ). Self-report questionnaires on illness identity, psychological, and physical functioning were assessed in two samples: adults with congenital heart disease (22-78year old; n=276) and with multisystem connective tissue disorders (systemic lupus erythematosus or systemic sclerosis; 17-81year old; n=241). The IIQ could differentiate four illness identity states (i.e., engulfment, rejection, acceptance, and enrichment) in both samples, based on exploratory and confirmatory factor analysis. All four subscales proved to be reliable. Rejection and engulfment were related to maladaptive psychological and physical functioning, whereas acceptance and enrichment were related to adaptive psychological and physical functioning. The present findings underscore the importance of the concept of illness identity. The IIQ, a self-report questionnaire, is introduced to measure four different illness identity states in adults with a chronic illness.
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