| 1. |
- Daelman, Bo, et al.
(författare)
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Frailty and cognitive function in middle-aged and older adults with congenital heart disease
- 2024
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Ingår i: Journal of the American College of Cardiology. - : Elsevier. - 0735-1097 .- 1558-3597. ; 83:12, s. 1149-1159
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Tidskriftsartikel (refereegranskat)abstract
- Background: Life expectancy of patients with congenital heart disease (CHD) has increased rapidly, resulting in a growing and aging population. Recent studies have shown that older people with CHD have higher morbidity, health care use, and mortality. To maintain longevity and quality of life, understanding their evolving medical and psychosocial challenges is essential.Objectives: The authors describe the frailty and cognitive profile of middle-aged and older adults with CHD to identify predictor variables and to explore the relationship with hospital admissions and outpatient visits.Methods: Using a cross-sectional, multicentric design, we included 814 patients aged ≥40 years from 11 countries. Frailty phenotype was determined using the Fried method. Cognitive function was assessed by the Montreal Cognitive Assessment.Results: In this sample, 52.3% of patients were assessed as robust, 41.9% as prefrail, and 5.8% as frail; 38.8% had cognitive dysfunction. Multinomial regression showed that frailty was associated with older age, female sex, higher physiologic class, and comorbidities. Counterintuitively, patients with mild heart defects were more likely than those with complex lesions to be prefrail. Patients from middle-income countries displayed more prefrailty than those from higher-income countries. Logistic regression demonstrated that cognitive dysfunction was related to older age, comorbidities, and lower country-level income.Conclusions: Approximately one-half of included patients were (pre-)frail, and more than one-third experienced cognitive impairment. Frailty and cognitive dysfunction were identified in patients with mild CHD, indicating that these concerns extend beyond severe CHD. Assessing frailty and cognition routinely could offer valuable insights into this aging population.
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| 2. |
- 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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| 3. |
- 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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| 4. |
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| 5. |
- 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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| 6. |
- Luyckx, Koen, et al.
(författare)
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Development and persistence of depressive symptoms in adolescents with CHD.
- 2016
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Ingår i: Cardiology in the young. - 1467-1107. ; 26:6, s. 1115-22
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Tidskriftsartikel (refereegranskat)abstract
- Patients with CHD are vulnerable to psychiatric disorders. The present study compared baseline depressive symptoms between adolescents with CHD and community adolescents, and also assessed the development and persistence of depressive symptoms in patients. We examined the implications of persistent depressive symptoms towards quality of life and patient-reported health. In total, 296 adolescents with CHD participated in a four-wave longitudinal study, with 9-month intervals, and completed measures of depressive symptoms - Center for Epidemiologic Studies Depression Scale (CES-D) - at time points one to four and of quality of life - linear analogue scale (LAS) - and patient-reported health - LAS and Pediatric Quality of Life Inventory - at T (time) 4. Information about diagnosis, disease complexity, and previous heart surgery was collected from medical records. At T1, 278 patients were matched 1:1 with community adolescents, based on sex and age. The findings of this study indicate that patients scored significantly lower on depressive symptoms compared with community adolescents. Depressive symptoms in the total patient sample were stable over time and were unrelated to disease complexity. Based on conventional cut-off scores of the CES-D, substantial individual differences existed in the extent to which depressive symptoms persisted over time: 12.2% of the patients reported elevated depressive symptoms at minimally three out of the four time points. Especially physical functioning, cardiac symptoms, and patient-reported health at T4 were predicted by persistent depressive symptoms, even when controlling for the level of depressive symptoms at T4. Our findings indicate that those involved in the care of adolescents with CHD should remain vigilant to persistent depressive symptoms and arrange timely referral to mental healthcare services.
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| 7. |
- 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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| 8. |
- Moons, Philip, 1968, et al.
(författare)
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The COVID-19 pandemic as experienced by adults with congenital heart disease from Belgium, Norway, and South Korea: impact on life domains, patient-reported outcomes, and experiences with care.
- 2022
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Ingår i: European journal of cardiovascular nursing. - : Oxford University Press (OUP). - 1873-1953 .- 1474-5151. ; 21:6, s. 620-629
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Tidskriftsartikel (refereegranskat)abstract
- The coronavirus disease-2019 (COVID-19) pandemic poses significant challenges to many groups within societies, and especially for people with chronic health conditions. It is, however, unknown whether and how the pandemic has thus far affected the physical and mental health of patient populations. Therefore, we investigated how the pandemic affected the lives of adults with congenital heart disease (CHD), compared pre- and peri-pandemic patient-reported outcome measures (PROMs) and a patient-reported experience measure (PREM), and investigated whether having had COVID-19 impacted pre-/peri-pandemic differences of the PROMs and PREM.As part of the ongoing APPROACH-IS II project, we longitudinally surveyed 716 adults with CHD from Belgium, Norway, and South Korea. Pre-pandemic measures were administered from August 2019 to February 2020 and the peri-pandemic surveys were completed September 2020-April 2021. The majority of patients indicated that their social lives (80%), mental health (58%), and professional lives/education (51%) were negatively impacted by the pandemic. Patients felt worried (65%), were afraid (55%), reported the pandemic felt 'close' to them (53%), and were stressed (52%). However, differences between pre- and peri-pandemic scores on the PROMs and PREM were negligibly small (Cohen's d < 0.20). Across measures, 5.8-15.8% of patients demonstrated changes (improved or worsened scores) that exceeded the minimal clinically important difference. There were no difference-in-differences for PROMs and PREM between patients who did vs. did not have COVID-19.Although the COVID-19 pandemic has been disruptive in many ways, pre- to peri-pandemic changes in PROMs and PREM of adults with CHD were negligibly small.
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| 9. |
- Na, Inwon, et al.
(författare)
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Absence from work or school in young adults with congenital heart disease: is illness identity associated with absenteeism?
- 2022
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Ingår i: European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology. - : Oxford University Press (OUP). - 1873-1953. ; 21:5, s. 491-498
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Tidskriftsartikel (refereegranskat)abstract
- Absence from work or school in patients with congenital heart disease (CHD) is an understudied domain. Illness identity, which is the degree to which a chronic illness is integrated into one's identity, could be hypothesized to be a predictor for absenteeism. This study determined the proportion of young adults with CHD absent from work or school and examined if illness identity dimensions were related to absenteeism.In a cross-sectional study, we included 255 patients with CHD. Data on absence from work or school over the past 12 months were obtained using self-report. The Illness Identity Questionnaire was used, which comprises four illness identity dimensions: rejection, engulfment, acceptance, and enrichment. Linear models with doubly robust estimations were computed after groups were balanced using propensity weighting. Absence from work/school occurred in 69% of young adults with CHD. Absence because of CHD specifically was present in 15% of the patients. Engulfment was significantly related to both all-cause absence and absence for CHD reasons.Patients who strongly define themselves in terms of their heart disease were more likely to be absent from work or school than those who did not. If this finding can be confirmed in future research, it has the potential to be a target for intervention to influence work/school absence.
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| 10. |
- Oris, Leen, et al.
(författare)
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Change and stability in depressive symptoms in young adults with type 1 diabetes.
- 2016
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Ingår i: Diabetes research and clinical practice. - : Elsevier BV. - 1872-8227 .- 0168-8227. ; 111, s. 93-96
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Tidskriftsartikel (refereegranskat)abstract
- This study examined inter-individual differences in depressive symptom development in young adults with type 1 diabetes. Individuals with persistent depressive symptoms were at risk for suboptimal development in terms of illness perceptions, illness functioning, and self-esteem. Individuals reporting no/minimal depressive symptoms over time were characterized by the most optimal development.
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| 11. |
- Oris, Leen, et al.
(författare)
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Illness Identity in Adolescents and Emerging Adults With Type 1 Diabetes: Introducing the Illness Identity Questionnaire.
- 2016
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Ingår i: Diabetes care. - : American Diabetes Association. - 1935-5548 .- 0149-5992. ; 39:5, s. 757-763
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Tidskriftsartikel (refereegranskat)abstract
- The current study examined the utility of a new self-report questionnaire, the Illness Identity Questionnaire (IIQ), which assesses the concept of illness identity, or the degree to which type 1 diabetes is integrated into one's identity. Four illness identity dimensions (engulfment, rejection, acceptance, and enrichment) were validated in adolescents and emerging adults with type 1 diabetes. Associations with psychological and diabetes-specific functioning were assessed.
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| 12. |
- Oris, Leen, et al.
(författare)
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Illness Identity in Adults with a Chronic Illness.
- 2018
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Ingår i: Journal of clinical psychology in medical settings. - : Springer Science and Business Media LLC. - 1573-3572 .- 1068-9583. ; 25:4, s. 429-440
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Tidskriftsartikel (refereegranskat)abstract
- The present study examines the concept of illness identity, the degree to which a chronic illness is integrated into one's identity, in adults with a chronic illness by validating a new self-report questionnaire, the Illness Identity Questionnaire (IIQ). Self-report questionnaires on illness identity, psychological, and physical functioning were assessed in two samples: adults with congenital heart disease (22-78year old; n=276) and with multisystem connective tissue disorders (systemic lupus erythematosus or systemic sclerosis; 17-81year old; n=241). The IIQ could differentiate four illness identity states (i.e., engulfment, rejection, acceptance, and enrichment) in both samples, based on exploratory and confirmatory factor analysis. All four subscales proved to be reliable. Rejection and engulfment were related to maladaptive psychological and physical functioning, whereas acceptance and enrichment were related to adaptive psychological and physical functioning. The present findings underscore the importance of the concept of illness identity. The IIQ, a self-report questionnaire, is introduced to measure four different illness identity states in adults with a chronic illness.
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| 13. |
- 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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| 14. |
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| 15. |
- Prikken, Sofie, et al.
(författare)
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Parental illness intrusiveness and youth glycaemic control in type 1 diabetes: intergenerational associations and processes.
- 2019
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Ingår i: Psychology & health. - : Informa UK Limited. - 1476-8321 .- 0887-0446. ; 34:4, s. 438-455
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Tidskriftsartikel (refereegranskat)abstract
- This study examined associations between the functioning of youth with type 1 diabetes and their parents, including parenting dimensions as intervening mechanisms. The study adds to the existing literature by focusing on (1) the concept of parental illness intrusiveness; (2) the (understudied) periods of adolescence and emerging adulthood; and (3) maternal and paternal functioning.Questionnaires were completed by 317 patient-mother dyads and 277 patient-father dyads. All patients (aged 14-25) had type 1 diabetes. The hypothesised model was compared to an alternative model using structural equation modelling.Youth reported on depressive symptoms and treatment adherence; Physicians provided HbA1c-values. Parents reported on illness intrusiveness, depressive symptoms, and their child's treatment adherence. Patients and parents reported on psychological control and overprotection.The hypothesised path model had a good fit to the data. Parental illness intrusiveness was positively associated with depressive symptoms and both were positively related to overprotection and psychological control. Psychological control was positively related to patients' depressive symptoms and negatively to treatment adherence. Poorer treatment adherence was associated with worse HbA1c-values.These findings underscore the relevance of parental illness intrusiveness and emphasise the importance of mothers' and fathers' roles throughout adolescence and emerging adulthood.
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| 16. |
- Rassart, Jessica, et al.
(författare)
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A Big Five Personality Typology in Adolescents with Congenital Heart Disease: Prospective Associations with Psychosocial Functioning and Perceived Health.
- 2016
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Ingår i: International journal of behavioral medicine. - : Springer Science and Business Media LLC. - 1532-7558 .- 1070-5503. ; 23:3, s. 310-318
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Tidskriftsartikel (refereegranskat)abstract
- This study aimed (1) to identify different personality types in adolescents with congenital heart disease (CHD), and (2) to relate these personality types to psychosocial functioning and several domains of perceived health, both concurrently and prospectively. Hence, this study aimed to expand previous research by adopting a person-centered approach to personality through focusing on personality types rather than singular traits.
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| 17. |
- Rassart, Jessica, et al.
(författare)
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A closer look at the developmental interplay between parenting and perceived health in adolescents with congenital heart disease.
- 2014
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Ingår i: Journal of behavioral medicine. - : Springer Science and Business Media LLC. - 1573-3521 .- 0160-7715. ; 37:6, s. 1202-1214
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Tidskriftsartikel (refereegranskat)abstract
- The present study examined associations between parenting and perceived health in adolescents with congenital heart disease (CHD) using a longitudinal trajectory approach. Adolescents with CHD were selected from the database of pediatric and congenital cardiology of the University Hospitals Leuven. A total of 429 adolescents (M age=16 at T1) participated in the present study, comprising four measurement waves spanning approximately 3years. Latent class growth analysis was used to identify trajectory classes of parenting and perceived health. Whereas adolescents from democratic households reported the most favorable health outcomes, adolescents from authoritarian, overprotective, and psychologically controlling families (all characterized by relatively high levels of psychological control) showed an increased risk for poor perceived health over time. Hence, the present study found substantial developmental associations between parenting and perceived health in adolescents with CHD. Future research should investigate whether working on the parent-adolescent relationship can foster patients' health.
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| 18. |
- Rassart, Jessica, et al.
(författare)
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Adjusting to congenital heart disease in adolescence: The role of patients’ personality and self
- 2015
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Ingår i: Clinical psychology and congenital heart disease. Edward Callus; Emilia Quadri (eds.). - Milan : Springer. - 9788847056985 ; , s. 53-68
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Bokkapitel (refereegranskat)abstract
- In this chapter, two key issues are addressed. First of all, we examine whether adolescents with congenital heart disease (conHD) have an increased risk for developing certain self-related vulnerabilities due to the additional stressors that they are facing. Although previous research identified some minor differences between adolescents with and without conHD (i.e., patients had lower extraversion scores and explored future possibilities less broadly as compared to healthy controls), patients seem to be as competent as their peers in addressing the developmental task of identity formation and in establishing a mature sense of self. Second, we explore the role of patients’ personality and self-concept for their physical and psychological health. Although extensive research has linked Type A and Type D personality to mortality and adverse health outcomes in patient groups with acquired cardiovascular pathologies, the personality and self-concept of individuals with conHD has received little to no attention in the literature. In this chapter, the findings of three recent studies are discussed in which patients’ personality and identity status were found to predict a variety of outcomes including quality of life, self-rated health, and healthcare utilization, even after controlling for the effects of sex, age, and illness complexity. Hence, these findings suggest that patients’ personality and self-concept might be important targets for future intervention and prevention efforts aimed at improving patients’ physical and psychological health. However, more research is needed before such interventions can be implemented into clinical practice.
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| 19. |
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| 20. |
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| 21. |
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| 22. |
- 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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| 23. |
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| 24. |
- 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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| 25. |
- Rassart, Jessica, et al.
(författare)
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Illness perceptions in adult congenital heart disease : A multi-center international study.
- 2017
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Ingår i: International Journal of Cardiology. - : Elsevier BV. - 0167-5273 .- 1874-1754. ; 244, s. 130-138
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Illness perceptions are cognitive frameworks that patients construct to make sense of their illness. Although the importance of these perceptions has been demonstrated in other chronic illness populations, few studies have focused on the illness perceptions of adults with congenital heart disease (CHD). This study examined (1) inter-country variation in illness perceptions, (2) associations between patient characteristics and illness perceptions, and (3) associations between illness perceptions and patient-reported outcomes.METHODS: Our sample, taken from APPROACH-IS, consisted of 3258 adults with CHD from 15 different countries. Patients completed questionnaires on illness perceptions and patient-reported outcomes (i.e., quality of life, perceived health status, and symptoms of depression and anxiety). Patient characteristics included sex, age, marital status, educational level, employment status, CHD complexity, functional class, and ethnicity. Linear mixed models were applied.RESULTS: The inter-country variation in illness perceptions was generally small, yet patients from different countries differed in the extent to which they perceived their illness as chronic and worried about their illness. Patient characteristics that were linked to illness perceptions were sex, age, employment status, CHD complexity, functional class, and ethnicity. Higher scores on consequences, identity, and emotional representation, as well as lower scores on illness coherence and personal and treatment control, were associated with poorer patient-reported outcomes.CONCLUSIONS: This study emphasizes that, in order to gain a deeper understanding of patients' functioning, health-care providers should focus not only on objective indicators of illness severity such as the complexity of the heart defect, but also on subjective illness experiences.
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