Illness Identity in Adults with a Chronic Illness

Oris, Leen; Luyckx, Koen; Rassart, Jessica; Goubert, Liesbet; Goossens, Eva; Apers, Silke; Arat, Seher; Vandenberghe, Joris; Westhovens, René; Moons, Philip

doi:10.1007/s10880-018-9552-0

Cited by 87 publications

(213 citation statements)

References 57 publications

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“…However, it is also possible that a more complex underlying mechanism is present. Indeed, a prior study has shown that patients who felt engulfed by their condition reported more depressive and anxiety symptoms . Such symptoms, in turn, are risk factors for higher healthcare use in adults with CHD .…”

Section: Discussionmentioning

confidence: 99%

“…Sample items for the different subscales are, respectively, “I just avoid thinking about my illness,” “Because of my illness, I have become a stronger person,” “I am able to place my illness in my life,” and “My illness completely consumes me.” A mean score was calculated per subscale. A prior study, performed on data from T 2013 of the Belgian branch of APPROACH‐IS, demonstrated that the IIQ is valid and reliable to be used in adults with CHD . More specifically, exploratory and confirmatory factor analysis indicated that IIQ subscale scores could differentiate among the 4 intended illness identity states in patients with CHD and multisystem connective tissue disorders (ie, factorial validity).…”

Section: Methodsmentioning

confidence: 99%

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Illness Identity: A Novel Predictor for Healthcare Use in Adults With Congenital Heart Disease

Bulck

Goossens

Luyckx

et al. 2018

JAHA

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BackgroundTo optimize healthcare use of adults with congenital heart disease, all important predictors of healthcare utilization should be identified. Clinical and psychological characteristics (eg, age and depression) have been found to be associated with healthcare use. However, the concept of illness identity, which assesses the degree to which congenital heart disease is integrated into one's identity, has not yet been investigated in association with healthcare use. Hence, the purpose of the study is to examine the predictive value of illness identity for healthcare use.Methods and ResultsIn this ambispective analytical observational cohort study, 216 adults with congenital heart disease were included. The self‐reported Illness Identity Questionnaire was used to assess illness identity states: engulfment, rejection, acceptance, and enrichment. After 1 year, self‐reported healthcare use for congenital heart disease or other reasons over the past 6 months was assessed including hospitalizations; visits to general practitioner; visits to medical specialists; and emergency room visits. Binary logistic and negative binomial regression analyses were conducted, adjusting for age, sex, disease complexity, and depressive and anxious symptoms. The more profoundly the heart defect dominated one's identity (ie, engulfment), the more likely this person was to be hospitalized (odds ratio=3.76; 95% confidence interval=1.43–9.86), to visit a medical specialist (odds ratio=2.32; 95% confidence interval=1.35–4.00) or a general practitioner (odds ratio=1.78; 95% confidence interval=1.01–3.17), because of their heart defect.ConclusionsIllness identity, more specifically engulfment, has a unique predictive value for the occurrence of healthcare encounters. This association deserves further investigation, in which the directionality of effects and the contribution of illness identity in terms of preventing inappropriate healthcare use should be determined.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Illness Identity: A Novel Predictor for Healthcare Use in Adults With Congenital Heart Disease

Bulck

Goossens

Luyckx

et al. 2018

JAHA

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“…Socio‐demographic data were collected by self‐reports and information on medical history was retrieved by chart reviews. Details on the methodology of APPROACH‐IS have been provided in a methods paper , and numerous papers have described findings obtained from this global sample or from patients from specific countries or regions .…”

Section: Approach‐ismentioning

confidence: 99%

Quality‐of‐life research in adult patients with congenital heart disease: current status and the way forward

Moons

Luyckx

2019

Acta Paediatrica

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Over the past four decades, the number of papers on quality of life (QoL) in congenital heart disease (CHD) has grown exponentially. However, firm conclusions have been hard to draw, because conceptual issues occurred and methodological differences prevented direct comparisons of studies. In general, QoL in CHD patients is good and it can be even better than in healthy peers when measured as life satisfaction. When QoL is measured as physical functioning, patients with complex CHD do worse than patients with moderate or mild defects or healthy individuals. APPROACH-IS was a large-scale international project that confirmed international variations in QoL, with Australian patients reporting the best QoL. Poor QoL was predicted by older age, being a job seeker, unemployed or disabled, never having married and those with worse functional status. Perceived illness and religion and spirituality were also significant predictors for QoL. On the other hand, country-specific characteristics and healthcare system factors did not play a significant role in explaining variances in QoL of patients with CHD around the globe. Future studies should rely on a sound conceptual basis, use longitudinal research designs, be conducted in international, multi-centre settings and evaluate interventions that promote patients' QoL.

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“…To date, differences in psychological functioning could not be sufficiently explained by the underlying severity of disease in ACHD [11]. Apparently, some patients succeed in overcoming disease-related challenges, while others experience substantial difficulties that lead to increased emotional distress.…”

Section: Introductionmentioning

confidence: 99%

Assessment of the Psychological Situation in Adults with Congenital Heart Disease

Andonian

Beckmann

Ewert

et al. 2020

JCM

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Background: Due to advances in the diagnosis and treatment of congenital heart disease (CHD), the number of adults who are surviving with congenital heart disease (ACHD) is constantly growing. Until recently, the psychological effects of CHD had been widely neglected. Current research provides evidence for an increased risk of emotional distress in ACHD. The concept of illness identity attempts to explain how patients experience and integrate their CHD into their identities. The present study investigated illness identity in relation to clinical parameters and psychological functioning. Psychometric properties of the German version of the Illness Identity Questionnaire (IIQD) were examined. Methods: Self-reported measures on illness identity and psychological functioning (HADS-D) were assessed in a representative sample of 229 ACHD (38 ± 12.5 (18−73) years; 45% female) at the German Heart Center Munich. Descriptive analyses and multiple regression models were conducted. Confirmatory factor analysis was performed to validate the IIQD. Results: The IIQD demonstrated good reliability. The originally-postulated four-factor structure could not be replicated. Anatomic disease complexity and functional status significantly influenced illness identity. Illness identity accounted for unique variances in depression and anxiety: Maladaptive illness identity states (i.e., , engulfment and rejection) were associated with higher emotional distress, whereas adaptive illness (i.e., , acceptance and enrichment) identity states were linked to lower emotional distress. Conclusions: Illness Identity emerged as a predictor of emotional distress in ACHD. Findings raise the possibility that interventions designed to target a patient’s illness identity may improve psychological well-being and cardiac outcomes in ACHD.

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Illness Identity in Adults with a Chronic Illness

Cited by 87 publications

References 57 publications

Illness Identity: A Novel Predictor for Healthcare Use in Adults With Congenital Heart Disease

Illness Identity: A Novel Predictor for Healthcare Use in Adults With Congenital Heart Disease

Quality‐of‐life research in adult patients with congenital heart disease: current status and the way forward

Assessment of the Psychological Situation in Adults with Congenital Heart Disease

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