| 1. |
- Luyckx, Koen, et al.
(författare)
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Illness identity in young adults with refractory epilepsy.
- 2018
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Ingår i: Epilepsy & behavior : E&B. - : Elsevier BV. - 1525-5069. ; 80, s. 48-55
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Tidskriftsartikel (refereegranskat)abstract
- Refractory epilepsy is an intrusive condition with important implications for daily functioning in emerging and young adulthood. The present study examined the degree to which refractory epilepsy is integrated in one's identity, and examined how such a sense of illness identity was related to health-related quality of life (HRQOL).A total of 121 18- to 40-year-old patients with refractory epilepsy (56.2% women) completed self-report questionnaires assessing the four illness identity states of acceptance, enrichment, engulfment, and rejection (Illness Identity Questionnaire (IIQ)); HRQOL (Quality of Life in Epilepsy Inventory - 31); and seizure frequency and severity (Liverpool Seizure Severity Scale (LSSS)). Illness identity scores were compared with a sample of 191 patients with a nonneurological chronic disease (congenital heart disease). Hierarchical regression analyses were conducted to assess the predictive value of illness identity for HRQOL when simultaneously controlling for demographic and clinical features.Patients with refractory epilepsy scored higher on rejection and engulfment and lower on acceptance when compared with patients with congenital heart disease. Further, seizure severity and number of medication side-effects were positively related to engulfment and negatively to acceptance. Finally, when simultaneously controlling for various demographic and clinical variables, illness identity significantly predicted HRQOL (with engulfment being the strongest and most consistent predictor).The extent to which patients with refractory epilepsy succeed in integrating their illness into their identity may have important implications for HRQOL. Clinicians should be especially attentive for signs that patients feel engulfed by their epilepsy.
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| 2. |
- Prikken, Sofie, et al.
(författare)
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A triadic perspective on control perceptions in youth with type 1 diabetes and their parents: Associations with treatment adherence and glycemic control.
- 2019
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Ingår i: Diabetes research and clinical practice. - : Elsevier BV. - 1872-8227 .- 0168-8227. ; 150, s. 264-273
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Tidskriftsartikel (refereegranskat)abstract
- A family approach was applied to examine youth, maternal, and paternal control perceptions in relation to type 1 diabetes outcomes in adolescents and emerging adults. Mean levels of personal and treatment control were compared among patients and parents. Their associations with diabetes outcomes were examined as well.The sample included 330 patient-mother-father triads. Patients' (48% male) mean age was 18.25 years (SD=2.98). All respondents reported on their control perceptions and youth treatment adherence. Physicians provided HbA1c-values.Paired-samples t-tests revealed higher personal control in patients compared to parents. Regression analyses examined if control perceptions predicted treatment adherence and HbA1c. Main effects for patient and maternal personal control and two-way interactions showed the best outcomes when both patients and mothers reported high personal control. Main effects of patient, maternal, and paternal treatment control and three-way interaction terms revealed better outcomes in case of high treatment control in patients and at least one parent, while the poorest outcomes were observed in case of low treatment control in all respondents.The findings highlight the importance of parental control perceptions on top of patients' own perceptions. A family perspective on illness perceptions and their associations with diabetes outcomes is encouraged.
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| 3. |
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| 4. |
- Prikken, Sofie, et al.
(författare)
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Illness intrusiveness in parents of youth with type 1 diabetes: A longitudinal study.
- 2020
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Ingår i: Pediatric diabetes. - : Hindawi Limited. - 1399-5448 .- 1399-543X. ; 21:5, s. 890-899
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Tidskriftsartikel (refereegranskat)abstract
- Type 1 diabetes in youth has a wide-ranging impact on families. This study aimed at a better understanding of experiences and difficulties that parents may encounter in their lives. Parental illness intrusiveness (i.e., a parent's perception that the illness of one's child interferes with one's personal life) was prospectively examined in mothers and fathers.Parental dyads (n=291) completed four annual questionnaires on parental illness intrusiveness, depressive symptoms, and treatment adherence of their child. Youth reported on their treatment adherence.First, cross-lagged models showed that mothers' illness intrusiveness predicted relative increases in both mothers' and fathers' illness intrusiveness over time. Similar effects were found for fathers. Second, paired-samples t-tests revealed higher illness intrusiveness in mothers at baseline. Latent growth curve modeling showed that mothers' illness intrusiveness generally decreased over time, while fathers' illness intrusiveness remained constant. Third, from a person-centered approach, multivariate latent class growth analysis identified three classes of parental couples: one with low and decreasing illness intrusiveness (54%), one with slightly elevated illness intrusiveness that remained stable over time (37%), and one with high illness intrusiveness that decreased in mothers but remained stable in fathers (9%). More parental depressive symptoms were reported in this latter class, while treatment adherence did not differ among the classes.Most parents in this sample reported rather low illness intrusiveness over time, yet some experienced a major impact of the illness. Examining parental illness intrusiveness may provide a better understanding of the specific challenges parents are confronted with. This article is protected by copyright. All rights reserved.
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| 5. |
- Rassart, Jessica, et al.
(författare)
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Illness identity and adjusting to type I diabetes: A four-wave longitudinal study.
- 2021
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Ingår i: Health psychology : official journal of the Division of Health Psychology, American Psychological Association. - : American Psychological Association (APA). - 1930-7810. ; 40:5, s. 326-336
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Tidskriftsartikel (refereegranskat)abstract
- Prior research has linked illness identity-or the extent to which the illness is integrated into one's identity-to diabetes-specific functioning. Four illness identity dimensions have been identified: rejection, acceptance, engulfment, and enrichment. As longitudinal research on this topic is scarce, this study examined developmental trajectories of illness identity and prospective associations between illness identity and diabetes-specific functioning.Adolescents and emerging adults with Type I diabetes, aged 14 to 25 (Mage = 19; 54% girls), participated in a four-wave longitudinal study spanning 3 years (N = 559 at Time 1). Participants filled out questionnaires on illness identity, treatment adherence, and diabetes-specific distress. Hemoglobin A1c (HbA1c) values were obtained from participants' medical records. To chart the development of illness identity over time, we performed latent growth curve modeling. Cross-lagged analysis was used to examine prospective associations between illness identity and diabetes-specific functioning.We observed small linear increases in acceptance (Mslope = .05, p < .01) and engulfment (Mslope = .03, p < .05) and a small linear decrease in rejection (Mslope = -.08, p < .001) across waves (with scale scores ranging between 1 and 5). Rejection negatively predicted and enrichment positively predicted treatment adherence 1 year later, which, in turn, positively predicted enrichment and negatively predicted engulfment over time. Furthermore, rejection and engulfment positively predicted diabetes-specific distress 1 year later. Finally, diabetes-specific distress and HbA1c positively predicted engulfment 1 year later. Standardized cross-lagged coefficients ranged between |.05| and |.11|.We identified small but interesting changes in three out of four illness identity dimensions. Prospective associations between illness identity and diabetes-specific functioning were bidirectional in nature. (PsycInfo Database Record (c) 2021 APA, all rights reserved).
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| 6. |
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| 7. |
- 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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| 8. |
- Raymaekers, Koen, et al.
(författare)
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A guide to improve your causal inferences from observational data.
- 2020
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Ingår i: European journal of cardiovascular nursing. - : Oxford University Press (OUP). - 1873-1953 .- 1474-5151. ; 19:8, s. 757-762
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Tidskriftsartikel (refereegranskat)abstract
- True causality is impossible to capture with observational studies. Nevertheless, within the boundaries of observational studies, researchers can follow three steps to answer causal questions in the most optimal way possible. Researchers must: (a) repeatedly assess the same constructs over time in a specific sample; (b) consider the temporal sequence of effects between constructs; and (c) use an analytical strategy that distinguishes within from between-person effects. In this context, it is demonstrated how the random intercepts cross-lagged panel model can be a useful statistical technique. A real-life example of the relationship between loneliness and quality of life in adolescents with congenital heart disease is provided to show how the model can be practically implemented.
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| 9. |
- Raymaekers, Koen, et al.
(författare)
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A Person-Centered Perspective on the Role of Peer Support and Extreme Peer Orientation in Youth with Type 1 Diabetes: A Longitudinal Study.
- 2020
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Ingår i: Annals of behavioral medicine : a publication of the Society of Behavioral Medicine. - : Oxford University Press (OUP). - 1532-4796.
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Tidskriftsartikel (refereegranskat)abstract
- Despite clear evidence that peers are crucial for youth development, research on the role of peers for youth with Type 1 diabetes (T1D) is scarce.The present study identified trajectory classes of perceived peer functioning in youth with T1D, based on peer support and extreme peer orientation (EPO). Further, classes were compared with respect to their trajectories of depressive symptoms, diabetes-specific distress, treatment adherence, and HbA1c values.Five hundred and fifty-nine youth (14-25 years) with T1D completed questionnaires at baseline, 1, 2, and 3 years later. Latent class growth analysis identified classes of perceived peer functioning. Multigroup latent growth curve modelling assessed whether these classes were characterized by different trajectories of general and diabetes-specific functioning.A socially normative class (48%) was characterized by trajectories of high support and low EPO over time. A socially reserved class (29%) was characterized by low support and EPO, and a socially oriented class (17%) by high support and EPO. Finally, a socially vulnerable class (6%) was characterized by low support and high EPO. The normative class functioned significantly better over time than the other classes. The vulnerable class functioned significantly worse compared to the reserved class, despite experiencing equally low levels of support.The results underscore the need to take youths' orientation toward the peer context into account alongside support when tapping into the role of peers, because individuals with low levels of support and EPO functioned substantially better than individuals with similar low levels of support but high levels of EPO.
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| 10. |
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| 11. |
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| 12. |
- Raymaekers, Koen, et al.
(författare)
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Diabetes-specific friend support in emerging adults with type 1 diabetes: Does satisfaction with support matter?
- 2021
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Ingår i: Journal of behavioral medicine. - : Springer Science and Business Media LLC. - 1573-3521 .- 0160-7715. ; 44:3, s. 402-411
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Tidskriftsartikel (refereegranskat)abstract
- Youth with type 1 diabetes (T1D) must adhere to a complex treatment regimen to prevent health complications. Friends may provide diabetes-specific support to help youth manage diabetes, but evidence on whether youth benefit from diabetes-specific friend support is inconclusive. The present study first investigated whether satisfaction with friend support was linked to psychological distress and diabetes management. Second, it was investigated whether self-esteem mediated these relations. To this end, 324 Dutch-speaking emerging adults (17-28years) with T1D completed questionnaires on diabetes-specific friend support, self-esteem, diabetes-specific distress, depressive symptoms, and self-care. HbA1c values were obtained from patients' physicians. Receiving diabetes-specific support from friends was associated with more diabetes-specific distress, but not for youth who were satisfied with the received support. Diabetes-specific friend support was not associated with other outcomes. Self-esteem did not mediate these relations. These results suggest that associations between diabetes-specific friend support and diabetes management are limited and that support satisfaction should be taken into consideration when examining the role of friend support for youth with T1D.
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| 13. |
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| 14. |
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| 15. |
- Raymaekers, Koen, et al.
(författare)
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The Role of Peers for Diabetes Management in Adolescents and Emerging Adults With Type 1 Diabetes: A Longitudinal Study.
- 2017
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Ingår i: Diabetes care. - : American Diabetes Association. - 1935-5548 .- 0149-5992. ; 40:12, s. 1678-1684
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Tidskriftsartikel (refereegranskat)abstract
- The increasing importance of peers in adolescence and emerging adulthood has been widely acknowledged. However, longitudinal research linking the peer context to diabetes management and outcomes is scarce. The present longitudinal study in a large sample of youths with type 1 diabetes related both positive and negative peer variables to diabetes outcomes over a time interval of 1 year.Our sample consisted of 467 adolescents (14-17 years of age) and emerging adults (18-25 years of age) with type 1 diabetes who participated in a two-wave longitudinal study. Questionnaires tapped into peer support, extreme peer orientation, parental responsiveness, diabetes-related distress, and treatment adherence. HbA1c values were obtained from the treating physicians of patients. Cross-lagged analysis from a structural equation modeling approach was performed to assess the directionality of effects.Peer support negatively predicted diabetes-related distress over time. Extreme peer orientation positively predicted treatment distress over time. Parental responsiveness negatively predicted food distress over time. Treatment adherence negatively predicted extreme peer orientation, treatment distress, and HbA1c values over time. For emerging adults specifically, there was a reciprocal relationship between HbA1c values and extreme peer orientation, because they positively predicted each other.This study highlights the importance of peers in predicting the functioning of youths with type 1 diabetes. Additionally, treatment adherence at baseline was found to negatively predict extreme peer orientation, treatment distress, and worse glycemic control over time. In sum, the current study underscores the importance of the peer context for adolescents and emerging adults with type 1 diabetes.
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| 16. |
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| 17. |
- Raymaekers, Koen, et al.
(författare)
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The Social Context and Illness Identity in Youth with Type 1 Diabetes: A Three-Wave Longitudinal Study.
- 2020
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Ingår i: Journal of youth and adolescence. - : Springer Science and Business Media LLC. - 1573-6601 .- 0047-2891. ; 49:2, s. 449-466
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Tidskriftsartikel (refereegranskat)abstract
- Youth with type 1 diabetes are confronted with the challenging task of integrating diabetes into their identity. This integration process, referred to as illness identity, may play an important role in how youth with type 1 diabetes cope with normative and illness-specific challenges. In line with socio-ecological theorizing, the present study investigated the longitudinal interplay between illness identity and two important social contexts for youth, the parent and peer contexts. A total of 559 (54.5% female; mean age=18.8 years) adolescents (14-17 years) and emerging adults (18-25 years) with type 1 diabetes completed questionnaires at three time-points with intervals of one year. A total of 98% of these participants had the Belgian nationality, and all of them spoke Dutch. At each time point, illness identity (i.e., acceptance, enrichment, rejection, and engulfment), peer support, extreme peer orientation, parental responsiveness, parental psychological control, and parental overprotection were self-assessed. The present findings show that overprotective parenting may lead to youth feeling engulfed by their diabetes. Further, when type 1 diabetes becomes adaptively integrated into youth's identity, the data suggest that youth may be better prepared to engage in healthy peer relationships. Thus, the present findings show that illness identity may be affected by the social context, and in turn may have an impact on parent and peer relationships as well. In general, the present findings underscore the importance of adaptive illness integration for youth with type 1 diabetes, and further emphasize the importance of achieving a coherent identity.
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| 18. |
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| 19. |
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| 20. |
- 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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| 21. |
- 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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| 22. |
- 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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| 23. |
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| 24. |
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| 25. |
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| 26. |
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| 27. |
- 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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| 28. |
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| 29. |
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| 30. |
- 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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| 31. |
- 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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| 32. |
- Callus, Edward, et al.
(författare)
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Phenotypes of adults with congenital heart disease around the globe : a cluster analysis.
- 2021
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: To derive cluster analysis-based groupings for adults with congenital heart disease (ACHD) when it comes to perceived health, psychological functioning, health behaviours and quality of life (QoL).METHODS: This study was part of a larger worldwide multicentre study called APPROACH-IS; a cross sectional study which recruited 4028 patients (2013-2015) from 15 participating countries. A hierarchical cluster analysis was performed using Ward's method in order to group patients with similar psychological characteristics, which were defined by taking into consideration the scores of the following tests: Sense Of Coherence, Health Behavior Scale (physical exercise score), Hospital Anxiety Depression Scale, Illness Perception Questionnaire, Satisfaction with Life Scale and the Visual Analogue Scale scores of the EQ-5D perceived health scale and a linear analogue scale (0-100) measuring QoL.RESULTS: 3768 patients with complete data were divided into 3 clusters. The first and second clusters represented 89.6% of patients in the analysis who reported a good health perception, QoL, psychological functioning and the greatest amount of exercise. Patients in the third cluster reported substantially lower scores in all PROs. This cluster was characterised by a significantly higher proportion of females, a higher average age the lowest education level, more complex forms of congenital heart disease and more medical comorbidities.CONCLUSIONS: This study suggests that certain demographic and clinical characteristics may be linked to less favourable health perception, quality of life, psychological functioning, and health behaviours in ACHD. This information may be used to improve psychosocial screening and the timely provision of psychosocial care.
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| 33. |
- 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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| 34. |
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| 35. |
- Caruana, Maryanne, et al.
(författare)
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Quality of life in Maltese adults with congenital heart disease: a second look – An APPROACH-IS substudy
- 2017
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Ingår i: International Cardiovascular Forum Journal. - : International Cardiovascular Forum Journal. - 2410-2636 .- 2409-3424. ; 12, s. 18-23
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Tidskriftsartikel (refereegranskat)abstract
- Background: A first quality of life (QOL) study among Maltese adults with congenital heart disease (ACHD) in 2016 found no significant differences when compared to the general population. The aims of the present study were to (1) compare QOL between Maltese and other European ACHD patients and (2) investigate medical predictors (i.e. number of surgical/non-surgical interventions, heart failure, arrhythmias, pacemaker/implantable cardioverter-defibrillator, cardiac hospitalisation during preceding year, follow-up frequency, other medical conditions, mood/anxiety/psychiatric disorders) of QOL in Maltese patients.Methods: Data collected during “Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease–International Study” (APPROACH-IS) was used. QOL was measured using linear analog scale (LAS) and Satisfaction With Life Scale (SWLS). QOL in 109 Maltese and 1510 European participants was compared. Multivariable logistic regression was used to test the predictive value of medical factors on QOL in Maltese patients.Results: There were no significant differences in QOL between the two cohorts [mean LAS Malta 80.51 (95% CI 77.96,83.07) vs. European 79.43 (95% CI 78.65,80.21) (p=0.776); mean SWLS Malta 26.00 (95% CI 24.94,27.06) vs. European 26.26 (95% CI 25.95,26.57) (p=0.288)] and no significant differences when cohorts were divided by gender and age. Only a mood/anxiety/other psychiatric disorder significantly predicted poorer QOL on both scales in Maltese patients (LAS (ß=-.389, p<0.001), SWLS (ß=-.352, p=0.001)). Conclusions: Maltese ACHD patients have a good QOL comparable to that of European counterparts. Mood, anxiety and other psychiatric disorders can negatively impact Maltese patients’ QOL. Better access to clinical psychology services should be ensured.
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| 36. |
- Caruana, Maryanne, et al.
(författare)
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Red Flags for Maltese Adults with Congenital Heart Disease : Poorer Dental Care and Less Sports Participation Compared to Other European Patients-An APPROACH-IS Substudy.
- 2017
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Ingår i: Pediatric Cardiology. - : Springer Science and Business Media LLC. - 0172-0643 .- 1432-1971. ; 38:5, s. 965-973
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Tidskriftsartikel (refereegranskat)abstract
- Studies in recent years have explored lifestyle habits and health-risk behaviours in adult congenital heart disease (ACHD) patients when compared to controls. The aim of this study was to investigate differences in lifestyle habits between Maltese and other European ACHD patients. Data on alcohol consumption, cigarette smoking, substance misuse, dental care and physical activity collected in 2013-2015 during "Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease-International Study" (APPROACH-IS) were analysed. Responses from 119 Maltese participants were compared to those of 1616 participants from Belgium, France, Italy, Norway, Sweden, Switzerland and the Netherlands. Significantly fewer Maltese patients with simple (Maltese 84.1% vs. European 97.5%, p < 0.001) and moderately complex CHD (Maltese 83.6% vs. European 97.4%, p < 0.001) brushed their teeth daily. Only 67.2% of Maltese with moderately complex disease had dental reviews in the previous year compared to 80.3% of Europeans (p = 0.02). Maltese patients with simple (Maltese 31.8% vs. European 56.1%, p = 0.002) and moderately complex lesions (Maltese 30.0% vs. European 59.2%, p < 0.001) performed less regular sport activities. Comparison by country showed Maltese patients to have significantly poorer tooth brushing and sports participation than patients from any other participating country. Alcohol consumption, cigarette smoking and substance misuse were not significantly different. This study highlights lifestyle aspects that Maltese ACHD patients need to improve on, which might not be evident upon comparing patients to non-CHD controls. These findings should also caution researchers against considering behaviours among patients in one country as necessarily representative of patients on the larger scale.
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| 37. |
- Casteigt, Benjamin, et al.
(författare)
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Atrial arrhythmias and patient-reported outcomes in adults with congenital heart disease : An international study
- 2021
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Ingår i: Heart Rhythm. - : Elsevier BV. - 1547-5271 .- 1556-3871. ; 18:5, s. 793-800
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Tidskriftsartikel (refereegranskat)abstract
- Background Atrial arrhythmias (ie, intra-atrial reentrant tachycardia and atrial fibrillation) are a leading cause of morbidity and hospitalization in adults with congenital heart disease (CHD). Little is known about their effect on quality of life and other patient-reported outcomes (PROs) in adults with CHD. Objective The purpose of this study was to assess the impact of atrial arrhythmias on PROs in adults with CHD and explore geographic variations. Methods Associations between atrial arrhythmias and PROs were assessed in a cross-sectional study of adults with CHD from 15 countries spanning 5 continents. A propensity-based matching weight analysis was performed to compare quality of life, perceived health status, psychological distress, sense of coherence, and illness perception in patients with and those without atrial arrhythmias. Results A total of 4028 adults with CHD were enrolled, 707 (17.6%) of whom had atrial arrhythmias. After applying matching weights, patients with and those without atrial arrhythmias were comparable with regard to age (mean 40.1 vs 40.2 years), demographic variables (52.5% vs 52.2% women), and complexity of CHD (15.9% simple, 44.8% moderate, and 39.2% complex in both groups). Patients with atrial arrhythmias had significantly worse PRO scores with respect to quality of life, perceived health status, psychological distress (ie, depression), and illness perception. A summary score that combines all PRO measures was significantly lower in patients with atrial arrhythmias (-3.3%; P = .0006). Differences in PROs were consistent across geographic regions. Conclusion Atrial arrhythmias in adults with CHD are associated with an adverse impact on a broad range of PROs consistently across various geographic regions.
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| 38. |
- 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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| 39. |
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| 40. |
- Fernández-Aranda, Fernando, et al.
(författare)
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COVID Isolation Eating Scale (CIES) : Analysis of the impact of confinement in eating disorders and obesity—A collaborative international study
- 2020
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Ingår i: European Eating Disorders Review. - : Wiley. - 1072-4133 .- 1099-0968. ; 28:6, s. 871-883
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Tidskriftsartikel (refereegranskat)abstract
- Confinement during the COVID-19 pandemic is expected to have a serious and complex impact on the mental health of patients with an eating disorder (ED) and of patients with obesity. The present manuscript has the following aims: (1) to analyse the psychometric properties of the COVID Isolation Eating Scale (CIES), (2) to explore changes that occurred due to confinement in eating symptomatology; and (3) to explore the general acceptation of the use of telemedicine during confinement. The sample comprised 121 participants (87 ED patients and 34 patients with obesity) recruited from six different centres. Confirmatory Factor Analyses (CFA) tested the rational-theoretical structure of the CIES. Adequate goodness-of-fit was obtained for the confirmatory factor analysis, and Cronbach alpha values ranged from good to excellent. Regarding the effects of confinement, positive and negative impacts of the confinement depends of the eating disorder subtype. Patients with anorexia nervosa (AN) and with obesity endorsed a positive response to treatment during confinement, no significant changes were found in bulimia nervosa (BN) patients, whereas Other Specified Feeding or Eating Disorder (OSFED) patients endorsed an increase in eating symptomatology and in psychopathology. Furthermore, AN patients expressed the greatest dissatisfaction and accommodation difficulty with remote therapy when compared with the previously provided face-to-face therapy. The present study provides empirical evidence on the psychometric robustness of the CIES tool and shows that a negative confinement impact was associated with ED subtype, whereas OSFED patients showed the highest impairment in eating symptomatology and in psychopathology.
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| 41. |
- Fogleman, Nicholas D., et al.
(författare)
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Regional variation in quality of life in patients with a Fontan circulation: A multinational perspective
- 2017
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Ingår i: American Heart Journal. - : Elsevier BV. - 0002-8703 .- 1097-6744. ; 193, s. 55-62
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Tidskriftsartikel (refereegranskat)abstract
- © 2017 Elsevier Inc. Background Impaired quality of life (QOL) is associated with congenital heart disease (CHD) and country of residence; however, few studies have compared QOL in patients with differing complexities of CHD across regional populations. The current study examined regional variation in QOL outcomes in a large multinational sample of patients with a Fontan relative to patients with atrial septal defects (ASDs) and ventricular septal defects (VSDs). Methods From the Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease—International Study (APPROACH-IS), 405 patients (163 Fontan and 242 ASD/VSD) across Asia, Europe, and North America provided consent for access to their medical records and completed a survey evaluating QOL (0 to 100 linear analog scale). Primary CHD diagnosis, disease complexity, surgical history, and documented history of mood and anxiety disorders were recorded. Differences in QOL, medical complications, and mood and anxiety disorders between Fontan and ASD/VSD patients, and across geographic regions, were examined using analysis of covariance. Hierarchical regression analyses were conducted to identify variables associated with the QOL ratings. Results Patients with a Fontan reported significantly lower QOL, and greater medical complications and mood and anxiety disorders relative to patients with ASD/VSD. Inpatient cardiac admissions, mood disorders, and anxiety disorders were associated with lower QOL among patients with a Fontan, and mood disorders were associated with lower QOL among patients with ASD/VSD. Regional differences for QOL were not observed in patients with a Fontan; however, significant differences were identified in patients with ASD/VSD. Conclusions Regional variation of QOL is commonplace in adults with CHD; however, it appears affected by greater disease burden. Among patients with a Fontan, regional variation of QOL is lost. Specific attempts to screen for QOL and mood and anxiety disorders among CHD patients may improve the care of patients with the greatest disease burden.
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| 42. |
- Fox, Kristen R, et al.
(författare)
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Smoking among adult congenital heart disease survivors in the United States: Prevalence and relationship with illness perceptions.
- 2021
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Ingår i: Journal of behavioral medicine. - : Springer Science and Business Media LLC. - 1573-3521 .- 0160-7715. ; 44, s. 772-783
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Tidskriftsartikel (refereegranskat)abstract
- The relationship between smoking and illness perceptions among congenital heart disease (CHD) survivors is unknown. The primary aims of the present study were to compare the smoking prevalence among CHD survivors to a nationally representative U.S. sample and examine the relationship between smoking and illness perceptions. CHD survivors (N=744) from six U.S. sites participated in the study. The smoking prevalence among CHD survivors (9.3%) was lower than the general population (15.3%). However, 23.3% of CHD survivors with severe functional limitations smoked. Smoking prevalence differed by U.S. region, with a greater proportion of those attending CHD care in the Midwest reporting smoking (11.8%). The illness perception dimensions of Concern and Emotional Response were independently associated with smoking. Differences in illness perceptions enhance our understanding of smoking among CHD survivors and may guide interventions promoting positive health behaviors. The protocol for the study from which the present analyses were conducted was recorded at ClinicalTrials.gov: NCT02150603.
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| 43. |
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| 44. |
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| 45. |
- Holbein, Christina E., et al.
(författare)
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A multinational observational investigation of illness perceptions and quality of life among patients with a Fontan circulation
- 2018
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Ingår i: Congenital Heart Disease. - : Computers, Materials and Continua (Tech Science Press). - 1747-079X .- 1747-0803. ; 13:3, s. 392-400
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Tidskriftsartikel (refereegranskat)abstract
- Objective First, to compare QOL and illness perceptions between patients with a Fontan circulation and patients with anatomically simple defects (ie, atrial septal defects [ASD] or ventricular septal defects [VSD]). Second, to explore illness perceptions as a mediator of the association between congenital heart disease (CHD) diagnosis and QOL. Design Cross-sectional observational study. Setting Twenty-four cardiology centers from 15 countries across five continents. Patients Four hundred thirty-five adult patients with congenital heart disease (177 Fontan and 258 ASD/VSD) ages 18-83 years. Outcome Measures QOL and illness perceptions were assessed by the Satisfaction With Life Scale and the Brief Illness Perceptions Questionnaire, respectively. Results Patients with a Fontan circulation reported lower QOL (Wald Z = −3.59, p = <.001) and more negative perceptions of their CHD (Wald Z = −7.66, p < .001) compared with patients with ASD/VSD. After controlling for demographics, anxiety, depressive symptoms, and New York Heart Association functional class, path analyses revealed a significant mediation model, αβ = 0.15, p = .002, 95% CI = 0.06-0.25, such that CHD diagnosis was indirectly related to QOL through illness perceptions. Conclusions The Fontan sample’s more negative perceptions of CHD were likely a reflection of life with a more complex defect. Illness perceptions appear to account for unique differences in QOL between groups of varying CHD complexity. Psychosocial screening and interventions may be important treatment components for patients with CHD, particularly those with Fontan circulations.
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| 46. |
- Holbein, Christina E., et al.
(författare)
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Health behaviours reported by adults with congenital heart disease across 15 countries
- 2020
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Ingår i: European Journal of Preventive Cardiology. - : Oxford University Press (OUP). - 2047-4873 .- 2047-4881. ; 10, s. 1077-1087
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Tidskriftsartikel (refereegranskat)abstract
- Background: Health behaviours are essential to maintain optimal health and reduce the risk of cardiovascular complications in adults with congenital heart disease. This study aimed to describe health behaviours in adults with congenital heart disease in 15 countries and to identify patient characteristics associated with optimal health behaviours in the international sample. Design: This was a cross-sectional observational study. Methods: Adults with congenital heart disease (n = 4028, median age = 32 years, interquartile range 25–42 years) completed self-report measures as part of the Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS). Participants reported on seven health behaviours using the Health Behaviors Scale-Congenital Heart Disease. Demographic and medical characteristics were assessed via medical chart review and self-report. Multivariate path analyses with inverse sampling weights were used to investigate study aims. Results: Health behaviour rates for the full sample were 10% binge drinking, 12% cigarette smoking, 6% recreational drug use, 72% annual dental visit, 69% twice daily tooth brushing, 27% daily dental flossing and 43% sport participation. Pairwise comparisons indicated that rates differed between countries. Rates of substance use behaviours were higher in younger, male participants. Optimal dental health behaviours were more common among older, female participants with higher educational attainment while sports participation was more frequent among participants who were younger, male, married, employed/students, with higher educational attainment, less complex anatomical defects and better functional status. Conclusions: Health behaviour rates vary by country. Predictors of health behaviours may reflect larger geographic trends. Our findings have implications for the development and implementation of programmes for the assessment and promotion of optimal health behaviours in adults with congenital heart disease. © The European Society of Cardiology 2019.
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| 47. |
- Holbein, Christina E, et al.
(författare)
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Perceived Health Mediates Effects of Physical Activity on Quality of Life in Patients With a Fontan Circulation
- 2019
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Ingår i: American Journal of Cardiology. - : Elsevier BV. - 0002-9149 .- 1879-1913. ; 124:1, s. 144-150
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Tidskriftsartikel (refereegranskat)abstract
- Patients with a Fontan circulation are at risk of a sedentary lifestyle. Given the direct relationship between physical activity and health, promotion of physical activity has the potential to improve outcomes, including quality of life (QOL). This study aimed to describe self-reported physical activity levels in adult Fontan patients and examine associations between physical activity, perceived health status and QOL. The sample consisted of 177 Fontan patients (Mage = 27.5 ± 7.6 years, 52% male) who reported their physical activity, perceived health status, and QOL as part of the cross-sectional Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study. Descriptive statistics and univariate analyses of variance with planned contrasts were computed to describe physical activity characteristics. Mediation analyses tested whether perceived health status variables mediated the association between physical activity and QOL. Forty-six percent of patients were sedentary while only 40% met international physical activity guidelines. Higher physical activity was associated with younger age, lower NYHA class, higher perceived general health, and greater QOL. Patients who commuted by walking and engaged in sports reported better perceived health and QOL. Mediation analyses revealed that perceived general health but not NYHA functional class mediated the association between physical activity and QOL (αβ = 0.22, 95% confidence interval = 0.04 to 0.49). In conclusion, Fontan patients likely benefit from regular physical activity, having both higher perceived general health and functional capacity; greater perceived health status may contribute to enhanced QOL. In conclusion, these data support the pivotal role of regular physical activity for Fontan patients.
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| 48. |
- Janssens, Astrid, et al.
(författare)
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Exploring the relationship between disease-related knowledge and health risk behaviours in young people with congenital heart disease.
- 2016
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Ingår i: European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology. - : Oxford University Press (OUP). - 1873-1953. ; 15:4, s. 231-240
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Tidskriftsartikel (refereegranskat)abstract
- In order to prevent cardiac complications, young people with congenital heart disease (CHD) should conduct heart-healthy behaviours. Therefore, they are assumed to have a good understanding of their disease. However, empirical data on the relationship between disease-related knowledge and health behaviours in this population is lacking.
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| 49. |
- Ko, Jong Mi, et al.
(författare)
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Differential impact of physical activity type on depression in adults with congenital heart disease : A multi-center international study
- 2019
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Ingår i: Journal of Psychosomatic Research. - : Elsevier BV. - 0022-3999 .- 1879-1360. ; 124
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: This study aimed to examine the association between physical activity (PA) and depression in a large international cohort of adults with congenital heart disease (ACHD) as data about the differential impact of PA type on depression in this population are lacking.METHODS: In 2018, we conducted a cross-sectional assessment of 3908 ACHD recruited from 24 ACHD-specialized centers in 15 countries between April 2013 to March 2015. The Hospital Anxiety and Depression Scale was used to assess self-reported depressive symptoms and the Health-Behavior Scale-Congenital Heart Disease was used to collect PA information. Cochran-Armitage tests were performed to assess trends between depressive symptom levels and PA participation. Chi-Square and Wilcoxon Rank Sum tests were utilized to examine relations between depressive symptom levels and patient characteristics. Stepwise multivariable models were then constructed to understand the independent impact of PA on depressive symptoms.RESULTS: The overall prevalence of elevated depressive symptoms in this sample was 12% with significant differences in rates between countries (p < .001). Physically active individuals were less likely to be depressed than those who were sedentary. Of the 2 PA domains examined, sport participation rather than active commute was significantly associated with reduced symptoms of depression. After adjustment in multivariable analysis, sport participation was still significantly associated with 38% decreased probability of depressive symptoms (p < .001).CONCLUSIONS: Sport participation is independently associated with reduced depressive symptoms. The development and promotion of sport-related exercise prescriptions uniquely designed for ACHD may improve depression status in this unique population.
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| 50. |
- Ko, Jong Mi, et al.
(författare)
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Physical Activity-Related Drivers of Perceived Health Status in Adults With Congenital Heart Disease
- 2018
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Ingår i: American Journal of Cardiology. - : Elsevier BV. - 0002-9149 .- 1879-1913. ; 122:8, s. 1437-1442
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Tidskriftsartikel (refereegranskat)abstract
- Data on the differential impact of physical activity on perceived health status (PHS) in a large adult congenital heart disease (ACHD) patient population are lacking. We conducted a cross-sectional assessment of 4,028 ACHD patients recruited from 24 ACHD-specialized centers in 15 countries across 5 continents to examine the association between physical activity and PHS in a large international cohort of ACHD patients. A linear analog scale of the EuroQol-5D 3 level version and the 12-item Short Form Health Survey-version 2 were used to assess self-reported health status and the Health-Behavior Scale-Congenital Heart Disease was used as a subjective measurement of physical activity type, participation, and level. Correlation analyses and Wilcoxon Rank Sum tests examined bivariate relations between sample characteristics and PHS scores. Then, multivariable models were constructed to understand the impact of physical activity on PHS. Only 30% of our sample achieved recommended physical activity levels. Physically active patients reported better PHS than sedentary patients; however, the amount of physical activity was not associated with PHS. Further statistical analyses demonstrated that specifically sport participation regardless of physical activity level was a predictor of PHS. In conclusion, the majority of ACHD patients across the world are physically inactive. Sport participation appears to be the primary physical activity-related driver of PHS. By promoting sport-related exercise ACHD specialists thus may improve PHS in ACHD patients.
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