Illness Identity in Inflammatory Bowel Disease.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Gothenburg Empowerment Scale (GES): psychometric properties and measurement invariance in adults with congenital heart disease from Belgium, Norway and South Korea.

BACKGROUND: Patient empowerment is associated with improvements in different patient-reported and clinical outcomes. However, despite being widely researched, high quality and theoretically substantiated disease-generic measures of patient empowerment are lacking. The few good instruments that are available have not reported important psychometric properties, including measurement invariance. The aim of this study was to assess the psychometric properties of the 15-item Gothenburg Empowerment Scale (GES), with a particular focus on measurement invariance of the GES across individuals from three countries. METHODS: Adults with congenital heart disease from Belgium, Norway and South Korea completed the GES and other patient-reported outcomes as part of an international, cross-sectional, descriptive study called APPROACH-IS II. The scale's content (missing data) and factorial validity (confirmatory factor analyses), measurement invariance (multi-group confirmatory factor analyses), responsiveness (floor and ceiling effects) and reliability (internal consistency) were assessed. RESULTS: Content validity, responsiveness and reliability were confirmed. Nonetheless, metric but not scalar measurement invariance was supported when including the three countries, possibly because the scale performed differently in the sample from South Korea. A second set of analyses supported partial scalar invariance for a sample that was limited to Norway and Belgium. CONCLUSION: Our study offers preliminary evidence that GES is a valid and reliable measure of patient empowerment in adults with congenital heart disease. However, cross-country comparisons must be made with caution, given the scale did not perform equivalently across the three countries.

Absence from work or school in young adults with congenital heart disease: is illness identity associated with absenteeism?

AIMS: 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. METHODS AND RESULTS: 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. CONCLUSIONS: 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.

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.

AIMS: 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. METHODS AND RESULTS: 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. CONCLUSIONS: 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.

Illness identity and adjusting to type I diabetes: A four-wave longitudinal study.

OBJECTIVES: 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. METHOD: 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. RESULTS: 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|. CONCLUSIONS: 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).

Personality functioning in adults with refractory epilepsy and community adults: Implications for health-related quality of life.

INTRODUCTION: Prior research has shown that people with epilepsy are at risk for a poorer health-related quality of life (HRQOL). However, patients differ greatly in how well they adjust to their epilepsy. To better understand these differences, the present study examined the role of personality. More specifically, we examined mean-level differences in Big Five personality traits between adults with refractory epilepsy and a community sample and related these traits to patients' HRQOL. METHODS: A total of 121 adults with refractory epilepsy (18-40 years old, 56% women) completed questionnaires on the Big Five personality traits, HRQOL, and seizure frequency and severity. Patients' Big Five scores were compared to those of a community sample matched on sex and age using paired samples t-tests. We conducted hierarchical regression analyses to examine associations between personality and HRQOL, while controlling for the effects of sex, age, age at diagnosis, seizure frequency, and seizure severity. RESULTS: Patients reported higher levels of neuroticism and lower levels of openness as compared to controls. In patients, seizure severity was positively related to neuroticism and negatively related to agreeableness. Finally, patients high in neuroticism and low in conscientiousness generally reported a poorer HRQOL. CONCLUSION: In the present study, small personality differences were observed between adults with refractory epilepsy and a community sample. Patients' personality was found to play an important role in adjusting to epilepsy, even after controlling for seizure frequency and severity. Personality assessment may help healthcare professionals in identifying patients at risk for poor HRQOL later in life.

A triadic perspective on control perceptions in youth with type 1 diabetes and their parents: Associations with treatment adherence and glycemic control.

AIMS: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Parental illness intrusiveness and youth glycaemic control in type 1 diabetes: intergenerational associations and processes.

OBJECTIVE: 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. DESIGN: 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. MAIN OUTCOME MEASURES: 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. RESULTS: 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. CONCLUSION: These findings underscore the relevance of parental illness intrusiveness and emphasise the importance of mothers' and fathers' roles throughout adolescence and emerging adulthood.

Correction: Identity Statuses Throughout Adolescence and Emerging Adulthood: A Large-scale Study into Gender, Age, and Contextual Differences.

[This corrects the article on p. 32 in vol. 57.].

Personality Functioning in Adolescents and Emerging Adults With Type 1 Diabetes.

PURPOSE: Although prior research has stressed the role of personality in adjusting to type 1 diabetes, longitudinal research is lacking. The objectives of the present study were twofold: (1) to chart the development of patients' personality over a 2-year period; and (2) to examine prospective associations among personality, treatment adherence, glycemic control, and diabetes-specific distress. METHODS: Adolescents and emerging adults with type 1 diabetes, aged 14-25 years (Mage = 18.86 years, 54% female), participated in a three-wave longitudinal study spanning 2 years (n = 560 at Time 1). Patients filled out questionnaires on Big Five personality traits, treatment adherence, and diabetes-specific distress. HbA1c values were obtained from treating physicians. We used latent growth curve modeling to examine the development of patients' personality. Cross-lagged path analysis was performed to examine prospective associations among the study variables. RESULTS: First, we observed mean-level increases in extraversion, agreeableness, and conscientiousness over the course of the study. Second, we uncovered bidirectional associations between personality and several important indicators of adjustment. Lower conscientiousness and higher extraversion predicted a relative decrease in treatment adherence 1 year later. Poorer treatment adherence, in turn, predicted relative decreases in conscientiousness and agreeableness over time. Furthermore, lower emotional stability predicted a relative increase in distress 1 year later. Higher distress, in turn, predicted a relative decrease in agreeableness over time. Finally, lower conscientiousness predicted poorer glycemic control 1 year later. CONCLUSIONS: This study found young patients to move toward a more mature personality and stressed the importance of personality in adjusting to type 1 diabetes.

Illness Identity in Adults with a Chronic Illness.

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 (22-78 year old; n = 276) and with multisystem connective tissue disorders (systemic lupus erythematosus or systemic sclerosis; 17-81 year 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.

A multinational observational investigation of illness perceptions and quality of life among patients with a Fontan circulation.

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, αß = 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.

Illness identity in young adults with refractory epilepsy.

INTRODUCTION: 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). METHODS: 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. RESULTS: 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). CONCLUSION: 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.

Prospective associations between illness perceptions and health outcomes in patients with systemic sclerosis and systemic lupus erythematosus: a cross-lagged analysis.

OBJECTIVE: Perceptions of patients with SLE and SSc are strongly associated with physical and psychological outcomes. This interplay is not yet fully understood. Therefore, the aim of this study was to explore the prospective associations between illness perceptions and depressive symptoms, anxiety, perceived health status and disease activity in SLE and SSc patients. METHODS: Patients with SLE and SSc from a single-centre university hospital participated in a longitudinal study spanning 1 year. At both time points, participants completed the revised Illness Perception Questionnaire; Hospital Anxiety and Depression Scale for measuring depressive symptoms and anxiety; The EuroQol five-dimensions with 5 response levels for perceived health status; and disease activity was recorded. The directionality of the associations was investigated using cross-lagged path analysis. RESULTS: A total of 128 SLE and 113 SSc patients with a mean (s.d.) age of 46.28 (14.97) and 60.17 (10.82) years, respectively, and mean (S.D.) disease duration of 13.90 (9.31) and 8.48 (9.14) years, respectively, participated. In SLE, more depressive symptoms, more anxiety and worse perceived health status predicted a relative decrease in illness coherence 1 year later. More severe perceived consequences predicted a relative decrease in perceived health status. The perception of a more chronic time course predicted an increase in depressive symptoms. In SSc, reporting more depressive symptoms and more anxiety predicted a relative decrease in illness coherence. A good perceived health status and less reporting of depressive symptoms predicted a relative decrease in perceived consequences. CONCLUSION: Evidence was obtained for reciprocal pathways between health outcomes and illness perceptions, although the predominant direction of effects was found to be from health outcomes to illness perceptions. TRIAL REGISTRATION: ClinicalTrials.gov, http://clinicaltrials.gov, NCT02655640.

Illness perceptions in adult congenital heart disease: A multi-center international study.

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.

Longitudinal trajectories of benefit finding in adolescents with Type 1 diabetes.

OBJECTIVES: Benefit finding, which refers to perceiving positive life changes resulting from adversity, has been associated with better psychosocial well-being in different chronic illnesses. However, little research to date has examined how benefit finding develops in the context of Type 1 diabetes (T1D). The present study aimed to identify trajectories of benefit finding across adolescence and to investigate prospective associations with depressive symptoms, self-care, and metabolic control. METHOD: Adolescents with T1D aged 10 to 14 (Mage = 12.49 years, 54% girls) participated in a 4-wave longitudinal study spanning 1.5 years (N = 252 at Time 1). Adolescents filled out questionnaires on benefit finding, self-care, depressive symptoms, and illness perceptions. HbA1c values were obtained through point of care assays. We used latent growth curve modeling (LGCM) and latent class growth analysis (LCGA) to examine the development of benefit finding. Cross-lagged path analysis and multi-group LGCM were used to examine prospective associations among the study variables. RESULTS: Adolescents reported moderate levels of benefit finding which decreased over time. Three benefit finding trajectory classes were identified: low and decreasing, moderate and decreasing, and high and stable. These trajectory classes differed in terms of self-care, perceived personal and treatment control, and perceptions of illness cyclicality. Higher levels of benefit finding predicted relative increases in self-care 6 months later. Benefit finding was not prospectively related to depressive symptoms and metabolic control. CONCLUSIONS: Benefit finding may serve as a protective factor for adolescents with Type 1 diabetes and may motivate these adolescents to more closely follow their treatment regimen. (PsycINFO Database Record

Loneliness in Children and Adolescents With Chronic Physical Conditions: A Meta-Analysis.

Objective: This meta-analysis examines loneliness in children and adolescents with chronic physical conditions as compared with their peers. Multilevel meta-analyses were performed on 43 studies (69 samples), published between 1987 and 2015. A total of 2,518 individuals with chronic physical conditions and 1,463 control peers were included in the analyses. Children and adolescents with chronic conditions are, on average, somewhat lonelier than their peers without such conditions. Moreover, the link between chronic conditions and loneliness varied according to the recruitment procedure used for participant selection. Stronger links were found for studies that recruited from patient organizations as compared with clinical registers. Findings support the link between loneliness and chronic conditions. To take into account the heterogeneity within patient groups, we advocate an alternative approach that cuts across diagnostic boundaries and focuses on illness-related variables such as illness duration and visibility of the condition.

Identity Statuses throughout Adolescence and Emerging Adulthood: A Large-Scale Study into Gender, Age, and Contextual Differences.

Identity formation constitutes a core developmental task during adolescence and emerging adulthood. However, it remains unclear how identity formation may vary across age, gender, and context (education vs. employment) in these developmental periods. The present study used a recently developed model to examine identity statuses or types in a sample of 7,906 Flemish individuals (14-30 years old; 64% female). As expected, achievement, foreclosure, moratorium, carefree diffusion, troubled diffusion, and an undifferentiated status emerged through cluster analysis. Women were overrepresented in the moratorium status (characterized by high exploration), whereas men were mainly situated in foreclosure and carefree diffusion statuses (both characterized by low exploration, but individuals in foreclosure having strong identity commitments as well). Individuals in the carefree and troubled diffusion statuses, which represent the least adaptive statuses, were youngest. High school students were overrepresented in the diffusion statuses and college students were mostly present in achievement (representing the most mature status) and moratorium. Finally, employed individuals were overrepresented in foreclosure, whereas unemployed individuals were mainly situated in troubled diffusion. In sum, the present study systematically examined relationships between empirically-identified identity statuses and socio-demographic variables in a large-scale sample, generating important information on age, gender, and contextual differences in identity.

Development and persistence of depressive symptoms in adolescents with CHD.

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.

Bringing Antonovsky's salutogenic theory to life: A qualitative inquiry into the experiences of young people with congenital heart disease.

OBJECTIVE: 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. METHOD: For this qualitative study, patients were selected from the sample of a preceding study on development of SOC (n = 429). In total, 12 young individuals with CHD who had either a weak (n = 6) or strong SOC (n = 6) over time were interviewed (8 women, median age of 20 years). Data analysis was based on the constant comparative method as detailed in the Qualitative Analysis Guide of Leuven. Commonalities and differences between patients from both groups were explored. RESULTS: The following themes emerged: (1) self-concept; (2) social environment; (3) daytime activities; (4) life events and disease-related turning points; (5) stress and coping; and (6) illness integration. Additionally, the degree of personal control was identified as an overarching topic that transcended the other themes when comparing both groups of patients. CONCLUSION: These results may have implications for the structure and content of interventions improving well-being in young people with CHD.