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| 3. |
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| 4. |
- Acuña Mora, Mariela, et al.
(författare)
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Definitions, instruments and correlates of patient empowerment : A descriptive review
- 2021
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Ingår i: Patient Education and Counseling. - : Elsevier. - 0738-3991 .- 1873-5134.
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Forskningsöversikt (refereegranskat)abstract
- Objective: This review aimed to: (i) inventory the definitions and measurements of patient empowerment in healthcare literature; (ii) appraise the conceptual and methodological rigor of included studies; and (iii) identify correlates of patient empowerment in persons with chronic conditions.Methods: Four databases were searched to identify articles measuring patient empowerment in persons with chronic conditions, used a quantitative design and provided evidence on correlates of patient empowerment. Seventy-six articles were included and analyzed by descriptive statistics and summative content analysis.Results: The articles used a range of definitions (n = 35) and instruments (n = 38), evaluating a range of correlates in four categories: sociodemographic characteristics, clinical outcomes, patient-reported outcomes and patient-reported experiences. The most frequent associations were between patient empowerment and age (n = 21), sex (n = 15), educational level (n = 15) and quality of life (n = 18). However, they were not always significant.Conclusion: The broad variation of definitions and instruments highlights the lack of consensus on how to interpret and measure patient empowerment. Although several covariates have been evaluated, there are few studies assess the same relationships.Practice implications: Consensus on a definition and measurement of patient empowerment is needed to improve the quality of future research and to provide a more cohesive body of knowledge.
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| 5. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
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Empowering young persons during the transition to adulthood
- 2020
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Ingår i: Transition from Pediatric to Adult Healthcare Services for Young Adults with Long-Term Conditions: An International Perspective on Nurses Roles and Interventions. - Cham : Springer International Publishing. - 9783030233839 ; , s. 19-46
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 6. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
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Empowering young persons with congenital heart disease: Using intervention mapping to develop a transition program - the STEPSTONES project.
- 2020
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Ingår i: Journal of pediatric nursing. - : Elsevier BV. - 1532-8449 .- 0882-5963. ; 50
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Tidskriftsartikel (refereegranskat)abstract
- Describe the implementation of intervention mapping in the development of a transition program that aims to empower adolescents with congenital heart disease.To gain a better understanding of the problem, we conducted a literature review, focus group and individual interviews, and a cross-sectional survey. This information helped us decide on the scope of the intervention, relevant theories, determinants, formulate performance and change objectives and identify adequate evidence-based change methods. Once the transition program had been designed, effectiveness and process evaluation studies were planned.Young persons with congenital heart disease have insufficient disease-related knowledge, self-management skills and high parental involvement. The transition program involves three meetings with a trained transition coordinator over a two-and-a-half-year period and targets young persons with congenital heart disease and their parents. The transition coordinators use change techniques such as goal-setting, modeling and active learning in order to target three personal determinants (knowledge, self-efficacy and self-management).The use of intervention mapping may lead to designing interventions tailored to the needs of the targeted population. The transition program described in this paper is currently being evaluated in a hybrid experimental design with simultaneous undertaking of the process evaluation.This transition program can lead to the empowerment of young persons with congenital heart disease and help them in the process of becoming more responsible for their care. If proven effective, it can be implemented for other chronic conditions.
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| 7. |
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| 8. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
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Gothenburg Empowerment Scale (GES): psychometric properties and measurement invariance in adults with congenital heart disease from Belgium, Norway and South Korea
- 2022
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- Background Patient empowerment is associated with improvements in different patient-reported and clinical outcomes. However, despite being widely researched, high quality and theoretically substantiated disease-generic measures of patient empowerment are lacking. The few good instruments that are available have not reported important psychometric properties, including measurement invariance. The aim of this study was to assess the psychometric properties of the 15-item Gothenburg Empowerment Scale (GES), with a particular focus on measurement invariance of the GES across individuals from three countries. Methods Adults with congenital heart disease from Belgium, Norway and South Korea completed the GES and other patient-reported outcomes as part of an international, cross-sectional, descriptive study called APPROACH-IS II. The scale's content (missing data) and factorial validity (confirmatory factor analyses), measurement invariance (multi-group confirmatory factor analyses), responsiveness (floor and ceiling effects) and reliability (internal consistency) were assessed. Results Content validity, responsiveness and reliability were confirmed. Nonetheless, metric but not scalar measurement invariance was supported when including the three countries, possibly because the scale performed differently in the sample from South Korea. A second set of analyses supported partial scalar invariance for a sample that was limited to Norway and Belgium. Conclusion Our study offers preliminary evidence that GES is a valid and reliable measure of patient empowerment in adults with congenital heart disease. However, cross-country comparisons must be made with caution, given the scale did not perform equivalently across the three countries.
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| 9. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
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Hybrid experimental design: A suitable design to tackle contamination of control groups
- 2016
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Ingår i: Nordic Conference in Nursing Research: Methods and Networks for the Future, June 15-17, Stockholm.
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Konferensbidrag (refereegranskat)abstract
- Background: Randomized controlled trials (RCTs) are considered to be the “gold standard” to assess the effectiveness of interventions. Because nursing interventions are most likely complex, multicomponent interventions, RCTs are often not suitable due to the risk of contamination of the control group. Such contamination can lead to a lower point estimate of the intervention’s effect and to underestimate the difference between both groups. Objective: To describe an innovative study design aiming to verify the contamination in the control group when testing the effectiveness of a person-centered transition program for adolescents with congenital heart disease (ConHD). Design: A hybrid experimental design is developed, in which a longitudinal, observational study is embedded in a RCT, resulting in a 3-arms design. The study will be conducted in 4 ConHD-centers in Sweden. Two centers will perform the RCT, by randomly assigning patients to either the experimental group (60 patients) or the comparison group (60 patients). This latter group may be subject of contamination. Two other centers are “intervention-naïve” and therefore comprise a contamination-free control group (120 patients). The occurrence of contamination will be investigated by comparing the comparison group and control group. Participants and setting: Participants are literate, Swedish-speaking adolescents with ConHD, aged 16 years and their parents. Discussion: This hybrid experimental design will give us the opportunity to investigate potential contamination of the comparison group, by studying differences with the control group from intervention-naïve centers. If this design is successful, it can be employed in the evaluation of complex nursing interventions.
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| 10. |
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| 11. |
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| 12. |
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| 13. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
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Patient empowerment and its correlates in young persons with congenital heart disease
- 2019
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Ingår i: European Journal of Cardiovascular Nursing. - : Oxford University Press (OUP). - 1474-5151 .- 1873-1953. ; 18:5, s. 389-398
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Tidskriftsartikel (refereegranskat)abstract
- Objective: The objective of this study was to measure the level of empowerment and identify its correlates in young persons with congenital heart disease. Study design: Patients aged 14–18 years with congenital heart disease, and under active follow-up in one of four paediatric cardiology centres in Sweden were invited to participate in a cross-sectional study. A total of 202 young persons returned the questionnaires. Patient empowerment was measured with the Gothenburg Young Persons Empowerment Scale that allows the calculation of total and subscale scores. Univariate and multivariate linear regression analyses were undertaken to analyse possible correlates, including: sex, age, health behaviours, knowledge of congenital heart disease, quality of life, patient-reported health, congenital heart disease complexity, transition readiness and illness perception. Results: The mean empowerment score was 54.6±10.6 (scale of 15–75). Univariate analyses showed that empowerment was associated with age, quality of life, transition readiness, illness perception, health behaviours and patient-reported health (perceived physical appearance, treatment anxiety, cognitive problems and communication issues). However, multivariable linear regression analyses identified that only transition readiness (β=0.28, P<0.001) and communication (β=0.36, P<0.001) had a positive association with patient empowerment. These variables were also significantly associated with the subscale scores of the empowerment scale of knowledge and understanding (P<0.001), shared decision-making (P<0.001) and enabling others (P<0.01). The overall models’ explained variance ranged from 8% to 37%. Conclusion: Patient empowerment was associated with transition readiness and fewer problems communicating. While it is not possible to establish the directionality of the associations, interventions looking to increase empowerment could benefit from using these variables (or measurements) for evaluation purposes.
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| 14. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
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Patient empowerment in young persons with chronic conditions: Psychometric properties of the Gothenburg Young Persons Empowerment Scale (GYPES).
- 2018
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Ingår i: PloS one. - : Public Library of Science (PLoS). - 1932-6203. ; 13:7
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Tidskriftsartikel (refereegranskat)abstract
- Empowerment in patients can lead to a higher participation in care and self-management skills. However, there are a limited number of high-quality instruments to assess empowerment and its various dimensions in young persons. The aim was to develop and assess the psychometric properties of the Gothenburg Young Persons Empowerment Scale (GYPES).The GYPES is a 15-item questionnaire designed to measure patient empowerment in young persons with chronic conditions. Three studies were conducted to evaluate the psychometric properties of the scale. Studies I and II assessed face, content and factorial validity, as well as responsiveness and reliability in young persons with congenital heart disease and diabetes. After these studies problematic items were identified and reworded and the final version of the GYPES was tested in young persons with diabetes in study III.The content and face validity of the scale was confirmed in study I. Confirmatory factor analyses (CFA) in study II supported the five-factor structure of the GYPES. However, one item had a low factor loading. The scale was revised and evaluated in study III. CFA of this version supported adequate model fit with factor loadings ranging from 0.385-0.941. A second-order model had an adequate fit to the data. Cronbach's alpha for the overall scale was 0.858 and for each subscale, alphas range from 0.609-0.858.GYPES was developed to measure patient empowerment in young persons with chronic conditions. Preliminary evidence supports that the GYPES may be a valid and reliable tool for assessing young persons' empowerment.
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| 15. |
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| 16. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
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The longitudinal association between patient empowerment and patient-reported outcomes: What is the direction of effect?
- 2022
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Ingår i: PloS one. - : Public Library of Science (PLoS). - 1932-6203. ; 17:11
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Tidskriftsartikel (refereegranskat)abstract
- Theoretical literature and cross-sectional studies suggest empowerment is associated with other patient-reported outcomes (PROs). However, it is not known if patient empowerment is leading to improvements in other PROs or vice versa.The present study aimed to examine the direction of effects between patient empowerment and PROs in young persons with congenital heart disease (CHD).As part of the STEPSTONES-CHD trial, adolescents with CHD from seven pediatric cardiology centers in Sweden were included in a longitudinal observational study (n = 132). Data were collected when patients were 16 (T0), 17 (T1) and 18 ½ years old (T2). The Gothenburg Young Persons Empowerment Scale (GYPES) was used to measure patient empowerment. Random intercepts cross-lagged panel models between patient empowerment and PROs (communication skills; patient-reported health; quality of life; and transition readiness) were undertaken.We found a significant cross-lagged effect of transition readiness over patient empowerment between T1 and T2, signifying that a higher level of transition readiness predicted a higher level of patient empowerment. No other significant cross-lagged relationships were found.Feeling confident before the transition to adult care is necessary before young persons with CHD can feel in control to manage their health and their lives. Clinicians interested in improving patient empowerment during the transitional period should consider targeting transition readiness.
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| 17. |
- 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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| 18. |
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| 19. |
- Apers, Silke, et al.
(författare)
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Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS) : Rationale, design, and methods
- 2015
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Ingår i: International Journal of Cardiology. - : Elsevier BV. - 0167-5273 .- 1874-1754. ; 179, s. 334-342
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Tidskriftsartikel (refereegranskat)abstract
- Background: Data on patient-reported outcomes (PROs) in adults with congenital heart disease (CHD) are inconsistent and vary across the world. Better understanding of PROs and their differences across cultural and geographic barriers can best be accomplished via international studies using uniform research methods. The APPROACH-IS consortium (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study) was created for this purpose and investigates PROs in adults with CHD worldwide. This paper outlines the project rationale, design, and methods. Methods/design: APPROACH-IS is a cross-sectional study. The goal is to recruit 3500-4000 adults with CHD from 15 countries in five major regions of the world (Asia, Australia, Europe, North and South America). Self-report questionnaires are administered to capture information on PRO domains: (i) perceived health status (12-item Short-form Health Survey & EuroQOL-5D); (ii) psychological functioning (Hospital Anxiety and Depression Scale); (iii) health behaviors (Health-Behavior Scale-Congenital Heart Disease); and (iv) quality of life (Linear Analog Scale & Satisfaction With Life Scale). Additionally, potential explanatory variables are assessed: (i) socio-demographic variables; (ii) medical history (chart review); (iii) sense of coherence (Orientation to Life Questionnaire); and (iv) illness perceptions (Brief Illness Perception Questionnaire). Descriptive analyses and multilevel models will examine differences in PROs and investigate potential explanatory variables. Discussion: APPROACH-IS represents a global effort to increase research understanding and capacity in the field of CHD, and will have major implications for patient care. Results will generate valuable information for developing interventions to optimize patients' health and well-being.
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| 20. |
- 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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| 21. |
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| 23. |
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| 24. |
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| 25. |
- 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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| 26. |
- Arat, S, et al.
(författare)
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Determinants of illness perceptions in adults with acute or chronic somatic diseases: a systematic review
- 2015
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Ingår i: Association for Researchers in Psychology and Health. 5-6 February 2015. Ghent, Belgium..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: In order to understand and respond to difficulties presented by disease, patients construct their own “common sense” cognitive illness model. This mental construction is assumed to be influenced by characteristics of the particular disease, the individual and collective experience. In this systematic review we aim to provide an overview on the determinants of illness perceptions in patients with acute or chronic somatic conditions. Methods: Five electronic databases (Medline, PsycInfo, Cinahl, Embase, Invert) and a grey literature register (Open Grey) were systematically searched. Subsequently, backward citation tracking of the eligible papers was conducted. Searches were limited to articles in English, Dutch, French and German published between January 1980 and December 2012. Two reviewers independently selected studies for inclusion and assessed the methodological quality with validated checklists. Findings: Thirty-one papers (23 quantitative and 8 qualitative studies) fulfilled the inclusion criteria. The determinants found were culture (n=14), gender (n=5), illness experience (n=5), personality (n=4), depressive symptoms/depression (n=2), age (n=1), disability (n=1), physical functioning (n=1), illness severity (n=1), information source and coping style (n=1). These studies were carried out in different patient populations, settings and countries. All determinants were correlated with illness perceptions except for ‘culture’. Inequalities in educational level explained more the variance in illness perceptions than culture per se. Discussion: This review provides an exhaustive overview of all determinants of illness perceptions currently available in the international literature. Knowledge of these determinants could facilitate comprehension of patients’ illness perceptions, enhances patient-provider communication and can be useful in developing effective interventions to alter dysfunctional illness perceptions.
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| 27. |
- Arat, Seher, et al.
(författare)
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Development and preliminary evaluation of the validity and reliability of a revised illness perception questionnaire for healthcare professionals.
- 2016
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Ingår i: BMC nursing. - : Springer Science and Business Media LLC. - 1472-6955. ; 15
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Tidskriftsartikel (refereegranskat)abstract
- Diverging perceptions between individual patients with somatic diseases and their healthcare professionals might cause problems in communication and decision-making. To date, no measurement tool is available to compare the illness perceptions between these two groups. The Revised Illness Perception Questionnaire (IPQ-R) is a validated, widely used instrument in many patient populations with somatic conditions. The aim of this study was to adapt the IPQ-R to a healthcare professional's version (IPQ-R HP) and to perform a preliminary evaluation of its validity and reliability.
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| 28. |
- Arat, Seher, et al.
(författare)
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Diverging illness perceptions between physicians about patients with systemic lupus erythematosus and systemic sclerosis: a vignette-based study.
- 2017
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Ingår i: Rheumatology international. - : Springer Science and Business Media LLC. - 1437-160X .- 0172-8172. ; 37:6, s. 915-922
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Tidskriftsartikel (refereegranskat)abstract
- Systemic lupus erythematosus (SLE) and systemic sclerosis (SSc) are complex chronic auto-immune diseases characterized by multiple organ involvement, comorbidities, and complications. This complexity results in a need for a multidisciplinary management and treatment of SLE and SSc by physicians from a number of medical disciplines, all of who may have different perceptions concerning the condition of a particular patient. The aim of this study was to explore differences in physicians' perceptions on the illness of SLE and SSc patients. Physicians from nine disciplines working at three hospitals in Belgium completed illness perception questionnaires for healthcare professionals based on four patient vignettes, i.e., two vignettes per disease (SLE-SSc). Statistical analysis was carried out by a k-means clustering technique for clustering physicians according to their illness perceptions. Fifty physicians, 62% men with a mean age of 42.8 years (SD 11.3) and mean working experience of 12.7 years (SD 11.6), participated. For each disease, three clusters of physicians with different scores in illness perceptions were identified. For SLE, these clusters were specified as the 'optimistic' group, the 'realistic' group, and the 'overwhelming impact by disease' group. For SSc, the clusters were characterized as the 'optimistic' group, the 'realistic' group, and the 'skeptical' group. We found divergent illness perceptions across physicians of the same and other disciplines. Our study yielded three clusters of physicians per disease with a large variability in illness perceptions. Further studies should focus on the factors that determine these differences and their consequences for patient care.
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| 29. |
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| 30. |
- Arat, Seher, et al.
(författare)
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Illness representations of systemic lupus erythematosus and systemic sclerosis: a comparison of patients, their rheumatologists and their general practitioners.
- 2017
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Ingår i: Lupus science & medicine. - : BMJ. - 2053-8790. ; 4:1
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Tidskriftsartikel (refereegranskat)abstract
- Discrepancies in illness representations between patients and physicians result in treatment difficulties, decreased well-being of patients and misunderstandings and disrupted communication. Hence, the objective of this study was to compare illness perceptions of individual patients with systemic lupus erythematosus (SLE) and systemic sclerosis (SSc), their rheumatologists and their general practitioners (GPs) and explore potential differences.This study has a cross-sectional design. Patients with SLE and SSc, who were followed at the rheumatology department of the University Hospitals Leuven (Belgium), completed the revised Illness Perception Questionnaire which measures patients' perceptions of their condition and captures nine dimensions. Physicians completed the Revised Illness Perception Questionnaire for Healthcare Professionals which consists of seven dimensions and measures perceptions of the healthcare professional regarding the disease of their patients. Intraclass correlation was performed to examine relationships between pairs of respondents; Cohen's d was used for estimating the magnitude of the difference.Questionnaires were sent to 284 patients of whom 241 (113 SSc and 128 SLE patients) were included. Five rheumatologists and 160 GPs participated. For both diseases, positive correlations were found for 'consequences', 'illness coherence' and 'emotional representations' among patients, rheumatologists and GPs. GPs scored higher on the 'consequences' of these diseases for the patient (d=0.71 for SLE; d=0.80 for SSc). Differences between rheumatologists and GPs were small for SSc and moderate to large for 'consequences' (d=0.56) and 'timeline acute/chronic' (d=0.95) in SLE with higher scores for GPs.For both diseases and among the three groups, significant correlations are detected for the dimensions 'consequences', 'illness coherence' and 'emotional representations'. Differences between rheumatologists and GPs were mainly detected in the case of SLE patients. This can have implications for the collaboration between these two groups of physicians in daily clinical practice.NCT02655640; Pre-results.
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| 31. |
- Arat, Seher, et al.
(författare)
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Modifiable correlates of illness perceptions in adults with chronic somatic conditions: A systematic review.
- 2018
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Ingår i: Research in nursing & health. - : Wiley. - 1098-240X .- 0160-6891. ; 41:2, s. 173-184
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Tidskriftsartikel (refereegranskat)abstract
- When individuals become ill, they want to understand and give meaning to their illness. The interpretation of this illness experience, or illness perception, is influenced by a range of individual, contextual, and cultural factors. Some of these factors may be modifiable by nursing interventions. The purpose of this systematic review was to investigate which modifiable factors were correlated with illness perceptions across studies of adults with different chronic somatic diseases. Using search terms tailored to each of four electronic databases, studies retrieved were reviewed by two independent evaluators, and each relevant article was assessed for methodological quality. Results were standardized by calculating correlation coefficients. Fifteen papers on illness perceptions in a variety of chronic diseases met the inclusion criteria. All used standardized measures of illness perceptions. We identified five groups of modifiable correlates of illness perceptions: illness-related factors, psychosocial factors, medication beliefs, information provision and satisfaction with information received, and quality of care. Our findings add to the knowledge of modifiable factors correlated with illness perceptions, including the importance of illness-related factors and psychosocial factors such as anxiety and depression. Knowledge of these correlates can facilitate understanding of patients' illness perceptions and might be useful in tailoring patient education programs.
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| 32. |
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| 33. |
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| 34. |
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| 35. |
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| 36. |
- Arnaert, Stijn, et al.
(författare)
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Heart failure related to adult congenital heart disease: prevalence, outcome and risk factors.
- 2021
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Ingår i: ESC heart failure. - : Wiley. - 2055-5822. ; 8:4, s. 2940-2950
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Tidskriftsartikel (refereegranskat)abstract
- Information on the prevalence, outcome and factors associated with heart failure in patients with adult congenital heart disease (CHD) (ACHD-HF) is lacking. We aimed at assessing the prevalence and outcome of ACHD-HF, the variables associated with ACHD-HF, and the differences between major anatomical/pathophysiological ACHD subgroups.We included 3905 patients (age 35.4±13.2years) under active follow-up in our institution (last visit >2010). Outcome of ACHD-HF cases was compared with sex- and age-matched cases. Univariable and multivariable binary logistic regression with ACHD-HF diagnosis as a dependent variable was performed. Overall prevalence of ACHD-HF was 6.4% (mean age 49.5±16.7years), but was higher in patients with cyanotic CHD (41%), Fontan circulation (30%), and a systemic right ventricle (25%). All-cause mortality was higher in ACHD-HF cases when compared with controls (mortality rate ratio 4.67 (2.36-9.27); P=0.0001). In multivariable logistic regression analysis, age at latest follow-up [per 10years; odds ratio (OR) 1.52; 95% confidence interval (CI) 1.31-1.77], infective endocarditis (OR 4.11; 95%CI 1.80-9.38), history of atrial arrhythmia (OR 3.52; 95%CI 2.17-5.74), pacemaker implantation (OR 2.66; 95% CI 1.50-4.72), end-organ dysfunction (OR 2.41; 95% CI 1.03-5.63), New York Heart Association class (OR 9.28; 95% CI 6.04-14.25), heart rate (per 10bpm; OR 1.27; 95% CI 1.08-1.50), ventricular dysfunction (OR 3.62; 95% CI 2.54-5.17), and pulmonary hypertension severity (OR 1.66; 95% CI 1.21-2.30) were independently related to the presence of ACHD-HF. Some variables (age, atrial arrhythmia, pacemaker, New York Heart Association, and ventricular dysfunction) were related to ACHD-HF in all anatomical/physiological subgroups, whereas others were not.ACHD-HF is prevalent especially in complex CHD and is associated with poor prognosis. Our data provide insight in the factors related to ACHD-HF including differences between specific anatomical and physiological subgroups.
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| 37. |
- Axelsson, Åsa B., 1955, et al.
(författare)
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European cardiovascular nurses and allied professions’ practical skills in cardiopulmonary resuscitation
- 2009
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Ingår i: Cardiology. - 0008-6312. - 9783805591430 ; 113:S1
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- The purpose of this study was to test practical skills of cardiopulmonary resuscitation (CPR) in European cardiovascular nurses and allied professions. Methods: Eighty-six delegates at the Spring Meeting on Cardiovascular Nursing in Malmö, Sweden, in 2008, were recruited for this study. Laerdal Resusci Anne SkillReporter manikins connected to a computer with the Laerdal PC SkillReporting System were used. The participants were told to perform CPR according to the “new”guidelines from 2005; 30:2 for three minutes. Results: 88% of the tested participants were nurses and 79% were female. Mean age were 42 years (range 19–63 years). They came from 14 different European countries, though one third was from Sweden. About two thirds had trained CPR within the last year. Seven per cent had no previous CPR training. According to practical skills the average inflations per minute were five (SD+1.5), average inflation volume 992 ml (SD+423) and average flow rate 857 ml/second (SD+401). According assessment of chest compressions the average compression rate was 121 (SD+22.5), average compression per minute 79.5 (SD+14.4), average compression depth 43.8 mm (SD+9.4) and average compression duty cycle 43.8% (SD+5.7). Hand position “too low”was the most common committed error. Conclusion: The practical skill in CPR among the tested delegates was rather satisfying regarding chest compressions. However, there were wide ranges as shown by large standard deviations. Regarding ventilations, too large volumes together with flow rates as high as those performed by many of these delegates may easily lead to gastric inflation during clinical CPR.
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| 38. |
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| 39. |
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| 40. |
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| 41. |
- Bay, Annika, et al.
(författare)
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Patient reported outcomes are associated with physical activity level in adults with congenital heart disease.
- 2017
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Ingår i: International Journal of Cardiology. - : Elsevier BV. - 0167-5273 .- 1874-1754. ; 243, s. 174-179
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: In general, adults with congenital heart disease (CHD) have impaired exercise capacity, and approximately 50% do not reach current recommendations on physical activity. Herein we analysed factors associated with physical activity level (PAL) in adults with CHD by using patient-reported outcomes (PRO).METHODS: Patients with CHD (n=471) were randomly selected from the national register on CHD and categorized according to complexity of lesions - simple (n=172, 39.1±14.6years), moderate (n=212, 39±14.1years), and severe (n=87, 31.7±10.7years). Participants completed a standardized questionnaire measuring PRO-domains including PAL. Variables associated with PAL were tested in multivariate logistic regression.RESULTS: PAL was categorized into high (≥3 METs ≥2.5h/week, n=192) and low (≥3 METs <2.5h/week, n=279). Patients with low PAL were older (42.6 vs. 35.8years, p≤0.001), had more prescribed medications (51% vs. 39%, p=0.009), more symptoms (25% vs. 16%, p=0.02) and comorbidity (45% vs. 34% p=0.02). Patients with low PAL rated a lower quality of life (76.6 vs. 83.4, p<0.001), satisfaction with life (25.6 vs. 27.3, p=0.003), a lower Physical Component Summary score (PCS) (78.1 vs. 90.5, p<0.001) and Mental Component Summary score (MCS) (73.5 vs. 79.5, p<0.001). Complexity of heart lesion was not associated with PAL. The included PROs - separately tested in the model, together with age were associated with PAL.CONCLUSIONS: PCS and MCS are stronger associated with PAL than age and medical factors. The use of these PROs could therefore provide valuable information of benefit for individualized advice regarding physical activity to patients with CHD.
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| 44. |
- Berghammer, Malin, 1970-, et al.
(författare)
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Comparison of participants and non-participants in patient-reported outcome surveys : the case of Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study
- 2017
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Ingår i: Cardiology in the Young. - : CAMBRIDGE UNIV PRESS. - 1047-9511 .- 1467-1107. ; 27:3, s. 427-434
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Tidskriftsartikel (refereegranskat)abstract
- Background: The last decade has seen a vast increase in the use of patient-reported outcomes. As patientreported outcomes are used in order to capture patients' perspectives of their health and illness, it is a prerequisite for accurate patient-reported outcome evaluations to use representative samples. In order to evaluate representativeness, the present study focussed on the comparison between participants and non-participants in the Swedish branch of the international study APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study), regarding demographic, clinical, and health status characteristics. Methods: Eligible patients for APPROACH-IS were identified and selected from SWEDCON, the Swedish registry for congenital heart disease (CHD). Overall, 912 eligible patients were identified, of whom 471 participated, 398 did not participate, and 43 were either unreachable or declined to participate in APPROACH-IS. The participants and nonparticipants were compared in terms of statistical significance and effect sizes. Results: Significant differences were observed between participants and non-participants for sex, age, primary diagnosis, number of cardiac operations, and fatigue; however, the effect sizes were in general small, except for the difference in primary diagnosis. No differences between the two groups were found in number of catheterisations, implanted device, the distribution of NYHA functional class, or health status and symptoms. Conclusions: This study shows that participants and non-participants are relatively comparable groups, which confirms the representativeness of the participants. The Swedish data from APPROACH-IS can therefore be reliably generalised to the population of adults with CHD in Sweden.
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| 45. |
- Berghammer, Malin, 1970-, et al.
(författare)
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Exploration of disagreement between the patient’s self reported limitations and limitations assessed by caregivers in adults with congenital heart disease
- 2018
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Ingår i: European Heart Journal. - : Oxford University Press (OUP). - 0195-668X .- 1522-9645. ; 39:Suppl 1
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Tidskriftsartikel (refereegranskat)abstract
- Background: The New York Heart Association (NYHA) classification is applied in a wide spectrum of heart diseases including adult patients with congenital heart disease (ACHD). The NYHA-class assessment is often based on the evaluation by the caregiver, but to what extent it correlates with the patient's view of their function is not fully known.Purpose: To investigate the relation between the patient's self-reported physical limitations, symptoms, other heart defect related factors and NYHA-class assessed by the caregiver.Methods: Eligible patients (n=333, age 39.2±13.6 years) were identified and randomly selected from the national registry for CHD. All of the patients completed a standardized questionnaire measuring different PRO-domains. By combing self-reported data with registry data including NYHA-class, analyses of agreement of physical limitations were performed.Results: Almost 30% of the patients rated their limitations higher compared to the NYHA-class estimated by the caregiver. Patients with self-reported limitations and their NYHA-class underestimated by caregivers, more often reported symptoms, anxiety, lower health and worked fewer hours/week compared to other patients with CHD. There were no differences regarding sex, type of symptoms, prescribed medications, or complexity of cardiac lesion. In patients without self-reported limitations agreement with NYHA-class estimated by caregivers was 97%.Conclusion: Adult patients with CHD and self-reported limitations may not be correctly identified by the care-giver. Instruments for patient reported outcomes might improve the assessment of physical limitations and could further improve the correctness in evaluating the patient's status.
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| 46. |
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| 47. |
- Berti, Dana, et al.
(författare)
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Prevalence and antithrombotic management of atrial fibrillation in hospitalised patients.
- 2015
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Ingår i: Heart (British Cardiac Society). - : BMJ. - 1468-201X .- 1355-6037. ; 101:11, s. 884-893
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Tidskriftsartikel (refereegranskat)abstract
- The objective of this study was to determine the prevalence of atrial fibrillation (AF) in a tertiary care centre, to describe the comorbidity profile of hospitalised patients with AF, and to evaluate the appropriateness of their maintenance antithrombotic management.
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- Bjørnnes, Ann Kristin, et al.
(författare)
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Experiences of informal caregivers after cardiac surgery: a systematic integrated review of qualitative and quantitative studies.
- 2019
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Ingår i: BMJ open. - : BMJ. - 2044-6055. ; 9:11
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Tidskriftsartikel (refereegranskat)abstract
- To provide a comprehensive synthesis of informal caregivers' experiences of caring for a significant other following discharge from cardiac surgery.Systematic integrated review without meta-analysis.A bibliographic search for publications indexed in six databases (Cochrane Library, CINAHL, MEDLINE, EMBASE, AMED and PsycINFO), including a scan of grey literature sources (GreyNet International, Google Scholar, Web of Science, WorldCat and the Clinical Trials Registry) was conducted in October 2018.Studies were included if they described views and perspectives of informal caregivers of cardiac surgery patients (non-intervention studies (qualitative and quantitative)), and the effectiveness of interventions to evaluate support programme for informal caregivers of cardiac surgery patients (intervention studies).Of the 4912 articles identified in searches, 42 primary research studies were included in a narrative synthesis with 5292 participants, including 3231 (62%) caregivers of whom 2557 (79%) were women. The median sample size across studies was 96 (range 6-734). Three major themes emerged from the qualitative study data: (1) caregiver information needs; (2) caregiver work challenges and (3) caregivers adaption to recovery. Across the observational studies (n=22), similar themes were found. The trend across seven intervention studies focused on caregiver information needs related to patient disease management and symptom monitoring, and support for caregivers to reduce symptoms of emotional distress.Informal caregivers want to assist in the care of their significant others after hospital discharge postcardiac surgery. However, caregivers feel insecure and overwhelmed and they lack clear/concise discharge information and follow-up support during the early at-home recovery period. The burden of caregiving has been recognised and reported since the early 1990s, but there remains a limited number of studies that assesses the effectiveness of caregiver interventions.CRD42018096590.
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