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.

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.

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.

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.].

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.

Parental and peer support in adolescents with a chronic condition: a typological approach and developmental implications.

Research has consistently demonstrated that contextual support is crucial towards the psychological functioning of adolescents with chronic conditions. However, the literature has predominantly focused on parental support instead of adopting an integrated approach to parental and peer support. The present manuscript with two longitudinal studies in adolescents with Type 1 diabetes and congenital heart disease examined the extent to which different clusters of maternal, paternal, and peer support at baseline were related to well- and ill-being over time. In both studies, four clusters emerged: combined support, parental support, peer support, and lack of support. Follow-up longitudinal analyses indicated that especially combined support from parents and peers proved to be of crucial importance towards psychological functioning. The present studies demonstrated the value of a typological approach for assessing social support in adolescents with chronic conditions. In addition to focusing on parental support, future research should assess peer support as well in these adolescents.

A Big Five Personality Typology in Adolescents with Congenital Heart Disease: Prospective Associations with Psychosocial Functioning and Perceived Health.

PURPOSE: 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. METHOD: Adolescents with CHD were selected from the database of pediatric and congenital cardiology of the University Hospitals Leuven. A total of 366 adolescents (15-20 years old) with CHD participated at time 1. These adolescents completed questionnaires on the Big Five personality traits, depressive symptoms, loneliness, and generic and disease-specific domains of health. Nine months later, 313 patients again completed questionnaires. RESULTS: Cluster analysis at time 1 revealed three personality types: resilients (37 %), undercontrollers (34 %), and overcontrollers (29 %), closely resembling typologies obtained in previous community samples. Resilients, under-, and overcontrollers did not differ in terms of disease complexity, but differed on depressive symptoms, loneliness, and generic and disease-specific domains of perceived health at both time-points. Overall, resilients showed the most favorable outcomes and overcontrollers the poorest, with undercontrollers scoring in-between. CONCLUSION: Personality assessment can help clinicians in identifying adolescents at risk for physical and psychosocial difficulties later in time. In this study, both over- and undercontrollers were identified as high-risk groups. Our findings show that both personality traits and types should be taken into account to obtain a detailed view on the associations between personality and health.

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.

Illness self-concept in Type 1 diabetes: a cross-sectional view on clinical, demographic, and psychosocial correlates.

The present study assessed the centrality of one's illness self-concept, or the degree to which chronic illness intrudes upon one's self, in a sample of 478 18-35-year-old patients with Type 1 diabetes. Confirmatory factor analysis indicated that illness self-concept centrality was a one-dimensional construct, despite the fact that three constituting components (i.e. pervasiveness, directionality, and illness self-consciousness) have been forwarded. Further, important demographic and clinical correlates of illness self-concept were identified: women, unemployed individuals, individuals with a lower educational level, and patients with an insulin pump had a more central illness self-concept. Finally, a series of correlation and regression analyses indicated that, despite the fact that illness self-concept centrality was negatively related to emotional stability, self-esteem, and diabetes integration, and positively to perceived consequences of diabetes, illness self-concept had unique predictive value over and above these variables for problem areas in diabetes and depressive symptoms. Implications and suggestions for future research are outlined.

Parental support, internalizing symptoms, perceived health status, and quality of life in adolescents with congenital heart disease: influences and reciprocal effects.

Caring for adolescents with congenital heart disease requires attention to physical health but also to psychosocial functioning. Identifying how such psychosocial variables influence one another over time is important for designing health care strategies. The present study examined how depressive symptoms, loneliness, paternal and maternal support, and quality of life predicted one another. A total of 429 mid- to late adolescents with congenital heart disease (53.4 % boys) participated in a three-wave longitudinal study. Cross-lagged analyses indicated that depressive symptoms and loneliness mutually reinforced one another over time and led to relative decreases in quality of life. Paternal- and not so much maternal-support predicted relative decreases in depressive symptoms and loneliness and relative increases in quality of life. Maternal and paternal support, in turn, were negatively predicted by previous levels of adolescent depressive symptoms. In sum, important temporal sequences were uncovered potentially providing information for prevention and intervention targeting psychosocial functioning in adolescents with congenital heart disease.

A closer look at the developmental interplay between parenting and perceived health in adolescents with congenital heart disease.

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 3 years. 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.

Personality and illness adaptation in adults with type 1 diabetes: the intervening role of illness coping and perceptions.

Inspired by the common sense model, the present cross-sectional study examined illness perceptions and coping as intervening mechanisms in the relationship between Big Five personality traits and illness adaptation in adults with Type 1 diabetes. A total of 368 individuals with Type 1 diabetes (18-35 years old) completed questionnaires on personality, diabetes-related problems, illness perceptions, and illness coping. First, Neuroticism, Agreeableness, and Conscientiousness predicted patients' illness adaptation, above and beyond the effects of sex, age, and illness duration. Second, illness coping was found to be an important mediating mechanism in the relationship between the Big Five and illness adaptation. Finally, perceived consequences and perceived personal control partially mediated the relationship between the Big Five and illness coping. These findings underscore the importance of examining patients' personality to shed light on their daily functioning and, hence, call for tailored intervention programs which take into account the personality of the individual patient.

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.