| 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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