| 1. |
- 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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| 2. |
- Rassart, Jessica, et al.
(författare)
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Illness Identity in Inflammatory Bowel Disease.
- 2022
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Ingår i: International journal of behavioral medicine. - : Springer Science and Business Media LLC. - 1532-7558 .- 1070-5503. ; 30, s. 77-88
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Tidskriftsartikel (refereegranskat)abstract
- We examined the degree to which adults with inflammatory bowel disease (IBD) integrated their illness into their identity and linked illness identity to important patient-reported outcomes.A total of 109 adults with IBD, aged 18 to 60 (Mage=35.93; 77% women) completed questionnaires on the four illness identity dimensions (rejection, acceptance, engulfment, and enrichment), medication adherence, depressive symptoms, life satisfaction, health status, and health-related quality of life (HRQoL). The illness identity scores of adults with IBD were compared to existing data from adults with congenital heart disease (CHD), refractory epilepsy (RE), and multisystemic connective tissue disorders (MSDs) using multivariate analyses of covariance. In adults with IBD, associations between illness identity and patient-reported outcomes were examined through hierarchical regression analyses, controlling for sex, age, illness duration, diagnosis, self-reported flares, and co-existing illnesses.Adults with IBD scored higher on rejection and engulfment and lower on acceptance than adults with CHD, lower on rejection but higher on engulfment than adults with RE, and higher on engulfment and enrichment but lower on rejection than adults with MSDs. Higher engulfment scores were related to more depressive symptoms, lower life satisfaction, and a poorer health status and HRQoL. In contrast, higher enrichment scores were related to more life satisfaction and a better HRQoL. Rejection and acceptance were not uniquely related to any of the outcomes.Adults with IBD showed relatively high levels of engulfment. Substantial associations were observed between illness identity and patient-reported outcomes, with engulfment being the strongest, most consistent predictor.
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| 3. |
- Campens, Sara, et al.
(författare)
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Illness identity and well-being in congenital heart disease: Directionality of effects and developmental trajectories.
- 2024
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Ingår i: Health psychology : official journal of the Division of Health Psychology, American Psychological Association. - 1930-7810. ; 43:3, s. 203-213
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Tidskriftsartikel (refereegranskat)abstract
- This longitudinal study explores the relationship between illness identity and well-being in emerging adults with congenital heart disease (CHD), aiming to understand the factors contributing to well-being in individuals with CHD.Dutch-speaking emerging adults with CHD (N = 254, age range = 24-28 years) participated in a three-wave study, which is part of the I-DETACH 2 project. Cross-lagged analyses examined the directionality of effects between illness identity and well-being. Multivariate latent class growth analysis identified developmental trajectory classes of illness identity. Multigroup latent growth curve modeling investigated differences in the development of well-being among these classes.Bidirectional associations were uncovered between illness identity and well-being. For instance, acceptance predicted better quality of life and less depressive symptoms over time. Three trajectory classes of illness identity were identified: high (i.e., as compared to the sample mean) acceptance and enrichment with low rejection and engulfment (Class 1), high rejection with low levels in the other dimensions (Class 2), and high rejection and engulfment along with high enrichment and low acceptance (Class 3). Individuals in Class 3 experienced the worse well-being. In addition, individuals with complex heart defects were strongly represented in this class.This study demonstrates the significance of illness identity in understanding individual differences in well-being among emerging adults with CHD. Additionally, this study provided valuable insight in the development of illness identity and its longitudinal relationship with well-being. (PsycInfo Database Record (c) 2023 APA, all rights reserved).
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| 4. |
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| 5. |
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| 6. |
- 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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| 7. |
- 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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| 8. |
- 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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| 9. |
- 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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| 10. |
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| 11. |
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| 12. |
- Kovacs, Adrienne H., et al.
(författare)
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Anxiety and Depression in Adults With Congenital Heart Disease
- 2024
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Ingår i: Journal of the American College of Cardiology. - : Elsevier Inc.. - 0735-1097 .- 1558-3597. ; 83:3, s. 430-441
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Tidskriftsartikel (refereegranskat)abstract
- Background: A comprehensive understanding of adult congenital heart disease outcomes must include psychological functioning. Our multisite study offered the opportunity to explore depression and anxiety symptoms within a global sample.Objectives: In this substudy of the APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults With Congenital Heart Disease–International Study), the authors we investigated the prevalence of elevated depression and anxiety symptoms, explored associated sociodemographic and medical factors, and examined how quality of life (QOL) and health status (HS) differ according to the degree of psychological symptoms.Methods: Participants completed the Hospital Anxiety and Depression Scale, which includes subscales for symptoms of anxiety (HADS-A) and depression (HADS-D). Subscale scores of 8 or higher indicate clinically elevated symptoms and can be further categorized as mild, moderate, or severe. Participants also completed analogue scales on a scale of 0 to 100 for QOL and HS. Analysis of variance was performed to investigate whether QOL and HS differed by symptom category.Results: Of 3,815 participants from 15 countries (age 34.8 ± 12.9 years; 52.7% female), 1,148 (30.1%) had elevated symptoms in one or both subscales: elevated HADS-A only (18.3%), elevated HADS-D only (2.9%), or elevations on both subscales (8.9%). Percentages varied among countries. Both QOL and HS decreased in accordance with increasing HADS-A and HADS-D symptom categories (P < 0.001).Conclusions: In this global sample of adults with congenital heart disease, almost one-third reported elevated symptoms of depression and/or anxiety, which in turn were associated with lower QOL and HS. We strongly advocate for the implementation of strategies to recognize and manage psychological distress in clinical settings. (Patient-Reported Outcomes in Adults With Congenital Heart Disease [APPROACH-IS]; NCT02150603)
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| 13. |
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| 14. |
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| 15. |
- 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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| 16. |
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| 17. |
- Moons, Philip, 1968, et al.
(författare)
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Patient-reported outcomes in adults with congenital heart disease : Inter-country variation, standard of living and healthcare system factors
- 2018
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Ingår i: International Journal of Cardiology. - : Elsevier BV. - 0167-5273 .- 1874-1754. ; 251, s. 34-41
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Tidskriftsartikel (refereegranskat)abstract
- AimsGeographical differences in patient-reported outcomes (PROs) of adults with congenital heart disease (ConHD) have been observed, but are poorly understood. We aimed to: (1) investigate inter-country variation in PROs in adults with ConHD; (2) identify patient-related predictors of PROs; and (3) explore standard of living and healthcare system characteristics as predictors of PROs.Methods and resultsAssessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease – International Study (APPROACH-IS) was a cross-sectional, observational study, in which 4028 patients from 15 countries in 5 continents were enrolled. Self-report questionnaires were administered: patient-reported health (12-item Short Form Health Survey; EuroQOL-5D Visual Analog Scale); psychological functioning (Hospital Anxiety and Depression Scale); health behaviors (Health Behavior Scale–Congenital Heart Disease) and quality of life (Linear Analog Scale for quality of life; Satisfaction With Life Scale). A composite PRO score was calculated. Standard of living was expressed as Gross Domestic Product per capita and Human Development Index. Healthcare systems were operationalized as the total health expenditure per capita and the overall health system performance. Substantial inter-country variation in PROs was observed, with Switzerland having the highest composite PRO score (81.0) and India the lowest (71.3). Functional class, age, and unemployment status were patient-related factors that independently and consistently predicted PROs. Standard of living and healthcare system characteristics predicted PROs above and beyond patient characteristics.ConclusionsThis international collaboration allowed us to determine that PROs in ConHD vary as a function of patient-related factors as well as the countries in which patients live.
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| 18. |
- Moons, Philip, 1968, et al.
(författare)
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Using ChatGPT and Google Bard to improve the readability of written patient information: A proof-of-concept.
- 2024
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Ingår i: European journal of cardiovascular nursing. - 1873-1953. ; 23:2, s. 122-126
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Tidskriftsartikel (refereegranskat)abstract
- Patient information materials often tend to be written at a reading level that is too advanced for patients. In this proof-of-concept study, we used ChatGPT and Google Bard to reduce the reading level of three selected patient information sections from scientific journals. ChatGPT successfully improved readability. However, it could not achieve the recommended sixth-grade reading level. Bard reached the reading level of sixth-graders, but oversimplified the texts by omitting up to 83% of the content. Despite the present limitations, developers of patient information are encouraged to employ large language models, preferably ChatGPT, to optimize their materials.
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| 19. |
- 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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| 20. |
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| 21. |
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| 22. |
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| 23. |
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| 24. |
- Van Bulck, Liesbet, et al.
(författare)
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Healthcare system inputs and patient-reported outcomes : a study in adults with congenital heart defect from 15 countries
- 2020
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Ingår i: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.TRIAL REGISTRATION: ClinicalTrials.gov: NCT02150603. Registered 30 May 2014.
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| 25. |
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| 26. |
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| 27. |
- Van Bulck, Liesbet, et al.
(författare)
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Illness Identity: A Novel Predictor for Healthcare Use in Adults With Congenital Heart Disease.
- 2018
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Ingår i: Journal of the American Heart Association. - 2047-9980. ; 7:11
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Tidskriftsartikel (refereegranskat)abstract
- To optimize healthcare use of adults with congenital heart disease, all important predictors of healthcare utilization should be identified. Clinical and psychological characteristics (eg, age and depression) have been found to be associated with healthcare use. However, the concept of illness identity, which assesses the degree to which congenital heart disease is integrated into one's identity, has not yet been investigated in association with healthcare use. Hence, the purpose of the study is to examine the predictive value of illness identity for healthcare use.In this ambispective analytical observational cohort study, 216 adults with congenital heart disease were included. The self-reported Illness Identity Questionnaire was used to assess illness identity states: engulfment, rejection, acceptance, and enrichment. After 1year, self-reported healthcare use for congenital heart disease or other reasons over the past 6months was assessed including hospitalizations; visits to general practitioner; visits to medical specialists; and emergency room visits. Binary logistic and negative binomial regression analyses were conducted, adjusting for age, sex, disease complexity, and depressive and anxious symptoms. The more profoundly the heart defect dominated one's identity (ie, engulfment), the more likely this person was to be hospitalized (odds ratio=3.76; 95% confidence interval=1.43-9.86), to visit a medical specialist (odds ratio=2.32; 95% confidence interval=1.35-4.00) or a general practitioner (odds ratio=1.78; 95% confidence interval=1.01-3.17), because of their heart defect.Illness identity, more specifically engulfment, has a unique predictive value for the occurrence of healthcare encounters. This association deserves further investigation, in which the directionality of effects and the contribution of illness identity in terms of preventing inappropriate healthcare use should be determined.
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| 28. |
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| 29. |
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| 30. |
- Van Bulck, Liesbet, et al.
(författare)
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Illness identity in adults with congenital heart disease: Longitudinal trajectories and associations with patient-reported outcomes and healthcare use.
- 2021
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Ingår i: Journal of advanced nursing. - : Wiley. - 1365-2648 .- 0309-2402. ; 77:12, s. 4743-4754
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Tidskriftsartikel (refereegranskat)abstract
- The aims of this study were to investigate the development of illness identity, the degree to which the disease is integrated into one's identity, by identifying trajectory classes in adults with congenital heart disease (CHD) and to describe these classes in terms of age, sex, disease complexity, patient-reported outcomes (PROs) and healthcare use.This three-wave observational cohort study was carried from 2013 till 2015 and includes 276 adults (median age: 34years; 54% men) with CHD.Illness identity entails four dimensions: engulfment, rejection, acceptance and enrichment. PROs included perceived health status, quality of life and psychological distress. Latent class growth analysis, analysis of variance, Poisson regression and negative binomial regression analyses were performed.Illness identity was relatively stable over time. The identified classes were meaningfully different in terms of age, disease complexity, PROs and healthcare use. Patients who did not reject their disease, patients who were not overwhelmed or patients who accepted their disease over time reported better health status and quality of life and less psychological distress. Less hospitalizations and visits to the general practitioner and medical specialist were reported by patients who were not overwhelmed or patients who accepted their disease over time. Patients with low rejection and high enrichment scores over time reported more visits at the general practitioner.These findings indicate that illness identity should be taken into account when trying to understand and optimize PROs and healthcare use of adults with CHD.This study scrutinizes the development and clinical meaningfulness of illness identity measured over time for adults with CHD. Illness identity was found to be stable over time. Moreover, the illness identity trajectories differed in terms of PROs and healthcare use, showing that measuring and intervening upon illness identity could be a potential pathway to optimize PROs and healthcare use.
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| 31. |
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| 32. |
- Van Bulck, Liesbet, et al.
(författare)
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Last year of life of adults with congenital heart diseases: causes of death and patterns of care.
- 2022
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Ingår i: European heart journal. - : Oxford University Press (OUP). - 1522-9645 .- 0195-668X. ; 43:42, s. 4483-4492
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Tidskriftsartikel (refereegranskat)abstract
- Although life expectancy in adults with congenital heart diseases (CHD) has increased dramatically over the past five decades, still a substantial number of patients dies prematurely. To gain understanding in the trajectories of dying in adults with CHD, the last year of life warrants further investigation. Therefore, our study aimed to (i) define the causes of death, and (ii) describe the patterns of healthcare utilisation in the last year of life of adults with CHD.This retrospective mortality follow-back study used healthcare claims and clinical data from BELCODAC, which includes patients with CHD from Belgium. Healthcare utilisation comprises cardiovascular procedures, CHD physician contacts, general practitioner visits, hospitalisations, emergency department (ED) visits, intensive care unit (ICU) admissions, and specialist palliative care and was identified using nomenclature codes. Of the 390 included patients, almost half of the study population (45%) died from a cardiovascular cause. In the last year of life, 87% of patients were hospitalised, 78% of patients had an ED visit, and 19% of patients had an ICU admission. Specialist palliative care was provided to 17% of patients, and to only 4% when looking at the patients with cardiovascular causes of death.There is a high use of intensive and potentially avoidable care at the end of life. This may imply that end-of-life care provision can be improved. Future studies should further examine end-of-life care provision in the light of patient's needs and preferences, and how the healthcare system can adequately respond.
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| 33. |
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| 34. |
- Van Bulck, Liesbet, et al.
(författare)
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Research Electronic Data Capture (REDCap): tackling data collection, management, storage, and privacy challenges.
- 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. ; 21:1, s. 85-91
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Tidskriftsartikel (refereegranskat)abstract
- Data are the basis of research; without data, there is no research. However, growing internationalization of research, increased complexity of study designs, and stricter legislation make high-quality data collection, management, and storage more important, but also more challenging than ever. This article provides an overview of common challenges clinical researchers face when collecting, managing, and storing data and how REDCap, Research Electronic Data Capture, can be a possible solution to address these challenges.
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| 35. |
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| 36. |
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| 37. |
- Van Bulck, Liesbet, et al.
(författare)
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What if your patient switches from Dr. Google to Dr. ChatGPT? A vignette-based survey of the trustworthiness, value and danger of ChatGPT-generated responses to health questions.
- 2024
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Ingår i: European journal of cardiovascular nursing. - 1873-1953. ; 23:1, s. 95-98
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Tidskriftsartikel (refereegranskat)abstract
- ChatGPT is a new artificial intelligence system that revolutionizes the way how information can be sought and obtained. In this study, the trustworthiness, value and danger of ChatGPT-generated responses on four vignettes that represented virtual patient questions was evaluated by 20 experts in the domain of congenital heart disease, atrial fibrillation, heart failure, or cholesterol. Experts generally considered ChatGPT-generated responses trustworthy and valuable, with few considering them dangerous. Fourty percent of the experts found ChatGPT responses more valuable than Google. Experts appreciated the sophistication and nuances in the responses, but also recognized that responses were often incomplete and sometimes misleading.
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| 38. |
- Willems, Ruben, et al.
(författare)
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Different levels of care for follow-up of adults with congenital heart disease: a cost analysis scrutinizing the impact on medical costs, hospitalizations, and emergency department visits.
- 2021
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Ingår i: The European journal of health economics : HEPAC : health economics in prevention and care. - : Springer Science and Business Media LLC. - 1618-7601. ; 22, s. 951-960
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Tidskriftsartikel (refereegranskat)abstract
- To scrutinize the economic impact of different care levels, such as shared care, in the follow-up of adult congenital heart disease (ACHD) patients.The BELgian COngenital heart disease Database combining Administrative and Clinical data (BELCODAC) was analyzed. Patients (N=6579) were categorized into five care levels based on their cardiac follow-up pattern between 2006 and 2010. Medical costs, hospitalizations, and emergency department visits were measured between 2011 and 2015.In patients with moderate lesions, highly specialized cardiac care (HSC; exclusive follow-up by ACHD specialists) and shared care with predominantly specialized cardiac care (SC+) were associated with significantly lower medical costs and resource use compared to shared care with predominantly general cardiac care (SC-) and general cardiac care (GCC). In the patient population with mild lesions, HSC was associated with better economic outcomes than SC- and GCC, but SC+was not. HSC was associated with fewer hospitalizations (-33%) and less pharmaceutical costs (-46.3%) compared to SC+. Patients with mild and moderate lesions in the no cardiac care (NCC) group had better economic outcomes than those in the GCC and SC- groups, but post-hoc analysis revealed that they had a different patient profile than patients under cardiac care.More specialized care levels are associated with better economic outcomes in patients with mild or moderate lesions in cardiac follow-up. Shared care with strong involvement of ACHD specialists might be a management option to consider. Characteristics of patients without cardiac follow-up but good medium-term economic prospects should be further scrutinized.
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