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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ObjectivesPediatric patients with cancer experience impairments in muscle strength and physical activity (PA) that may reduce autonomy during hospitalization. To determine the effects of strength exercise interventions on the accomplishment of activities of daily living (ADLs), motor performance, and PA in children with leukemia or non-Hodgkin lymphoma, we randomly allocated patients (4–18 years) immediately after diagnosis into two exercise groups.MethodsThe intervention group (IG; n = 21) received a specific strength training combined with a standard care exercise program, whereas the control group (CG; n = 20) was provided standard care exercise program without any targeted muscle strengthening. After the baseline visit, participants were followed-up three times until intensive treatment cessation. We assessed physical function limitations using the Activities Scale for Kids© (ASK) and Functional ADL Screen. Secondary outcomes were PA levels using accelerometer and motor performance as measured by MOON-test (motor performance in pediatric oncology-test).ResultsIn both groups, ADL accomplishment had significantly increased (p < 0.05). However, no significant between-group differences for ASK outcome were noted. Motor performance was reduced in all motor abilities.ConclusionsBoth exercise interventions were effective to maintain ADLs and motor performance during intensive treatment. In comparison, regular strength exercise interventions in the course of therapy tended to be more beneficial with regards to muscular explosive and endurance strength.

The objective of this study was to analyze parental counselling for fetal heart disease in an interdisciplinary and multicenter setting using a validated questionnaire covering medical, sociodemographic, and psychological aspects. n = 168 individuals were recruited from two pediatric heart centers and two obstetrics units. Overall, counselling was combined successful and satisfying in >99%; only 0.7% of parents were dissatisfied. "Perceived situational control" was impaired in 22.6%. Adequate duration of counselling leads to more overall counselling success (r = 0.368 ***), as well as providing written or online information (57.7% vs. 41.5%), which is also correlated to more "Transfer of Medical Knowledge" (r = 0.261 ***). Interruptions of consultation are negatively correlated to overall counselling success (r = −0.247 **) and to "Transparency regarding the Treatment Process" (r = −0.227 **). Lacking a separate counselling room is associated with lower counselling success for "Transfer of Medical Knowledge" (r = 0.210 ***). High-risk congenital heart disease (CHD) is correlated to lower counselling success (42.7% vs. 71.4% in low-risk CHD). A lack of parental language skills leads to less overall counselling success. There is a trend towards more counselling success for "Transfer of Medical Knowledge" after being counselled solely by cardiologists in one center (r = 0.208). Our results indicate that a structured approach may lead to more counselling success in selected dimensions. For complex cardiac malformations, counselling by cardiologists is essential. Parental "Perceived Situational Control" is often impaired, highlighting the need for further support throughout the pregnancy.