Life expectancy and end-of-life communication in adult patients with congenital heart disease, 40-53 years after surgery

Aims: Although survival of patients with congenital heart disease (CHD) improved significantly over time, life expectancy is still not normal. We aimed to investigate how adult patients, their partners, and treating cardiologists estimated the individual life expectancy of CHD patients. Furthermore, preferences regarding end-of-life (EOL) communication were investigated. Methods and results: In this study, we included 202 patients (age: 50 ± 5) who were operated in childhood (&lt;15 years old) between 1968 and 1980 for one of the following diagnoses: atrial septal defect, ventricular septal defect, pulmonary stenosis, tetralogy of Fallot, or transposition of the great arteries. A specific questionnaire was administered to both the patients and their partners, exploring their perceived life expectancy and EOL wishes. Two cardiologists independently assessed the life expectancy of each patient. Most adults with CHD believed their life expectancy to be normal. However, significant differences were found between estimated life expectancy by the cardiologist and patients (female: P = 0.001, male: P = 0.002) with moderate/severe defects, as well as for males with mild defects (P = 0.011). Regarding EOL communication, 85.1% of the patients reported that they never discussed EOL with a healthcare professional. Compared with patients with mild CHD, significantly more patients with moderate/severe defect discussed EOL with a physician (P = 0.011). The wish to discuss EOL with the cardiologist was reported by 49.3% of the patients and 41.7% of their partners. Conclusion: Adult patients, especially with moderate/severe CHD, perceived their life expectancy as normal, whereas cardiologists had a more pessimistic view than their patients. Increased attention is warranted for discussions on life expectancy and EOL to improve patient-tailored care.</p

Reducing social anxiety in adolescents distressed by a visible difference: Results from a randomised control trial of a web-based intervention

A visible difference to the face or body may challenge adolescents’ adjustment and engagement in life activities, where some require psychosocial support. However, evidence is limited for whether existing interventions for this adolescent group reduce social or appearance-related distress. We therefore conducted a parallel-group, randomised control trial to evaluate the effectiveness of Young Person's Face IT, a self-guided web-based psychosocial intervention developed for adolescents with a visible difference who experience distress. Adolescents (N = 189, aged 11–18) from two countries (Norway and the Netherlands), were randomly allocated to an intervention group or care as usual (CAU). Outcomes were body esteem, social anxiety, perceived stigmatisation, and life disengagement. Compared with CAU, participants who completed Young Person's Face IT showed reductions in social anxiety symptoms (ηp2 = 0.06). No significant improvements were found for the other outcomes. This study endorses web-based psychosocial support in reducing social anxiety in adolescents distressed by a visible difference. Future studies are needed to confirm the effectiveness of Young Person's Face IT and to explore potential long-term effects

Tracking CF disease progression with CT and respiratory symptoms in a cohort of children aged 6–19 years

Summary Introduction Cystic fibrosis (CF) lung disease is characterized by bronchiectasis and trapped air on chest computed tomography (CT). Objective We aim to validate bronchiectasis and trapped air as outcome measures by evaluating associations between changes in bronchiectasis, trapped air and patient‐reported respiratory symptoms. Methods A longitudinal cohort study has been conducted. CF patients (aged 6–19 years) who had two routine CTs and completed twice a Cystic Fibrosis Questionnaire‐Revised within 2 years (referred to as T1 and T2), in the period of July 2007 to January 2012 were included. Bronchiectasis and trapped air were scored using the CF‐CT scoring system. Correlation coefficients and student's paired t tests were performed. Results In total 40 patients were included with a median age at T1 of 12.6 years (range 6–17 years), and at T2 14.5 years (range 8–19 years). At T1, bronchiectasis (r = −0.49, P < 0.01) and trapped air (r = −0.34, P = 0.04) correlated with CFQ‐R Respiratory Symptoms Scores (CFQ‐R RSS). At T2 similar correlations were found with the CFQ‐R RSS. Over 2 years, there was significant progression in bronchiectasis (P = 0.03) and trapped air (P = 0.03), but not in CFQ‐R RSS. Changes in bronchiectasis and trapped air were not associated with changes in CFQ‐R RSS. Conclusion Our results indicate that bronchiectasis and trapped are sensitive outcome measures in CF lung disease, showing a significant association with CFQ‐R RSS at two‐time points. However, progression of bronchiectasis and trapped air over 2 year does not necessarily correlate to changes in quality of life. Pediatr Pulmonol. 2014; 49:1182–1189. © 2014 Wiley Periodicals, Inc

FRIENDS for Life: Implementation of an indicated prevention program targeting childhood anxiety and depression in a naturalistic setting

We assessed the implementation characteristics and children's appraisal of FRIENDS for Life, a school-based prevention program targeting childhood anxiety and depression, and its relation to program outcomes. Prevention workers delivered the program using specific therapeutic skills, but did not adhere completely to the protocol. However, this appeared not to negatively affect program outcomes. We found few other significant associations between program integrity and outcomes. Children's participation was good and they appraised the program positively. Children rated the program more positively when protocol adherence was lower. In conclusion, a highly protocolled intervention can be successfully transferred to daily school practice

The age of onset of anxiety disorders

Book cover Age of Onset of Mental Disorders pp 125–147Cite as The Age of Onset of Anxiety Disorders Jeroen S. Legerstee, Bram Dierckx, Elisabeth M. W. J. Utens, Frank C. Verhulst, Carola Zieldorff, Gwen C. Dieleman & Jasmijn M. de Lijster Chapter First Online: 12 November 2018 1043 Accesses Abstract Anxiety disorders are highly prevalent and debilitating psychiatric conditions, which often remain unrecognised and untreated. However, left untreated, anxiety disorders often persist and can contribute to the development of other psychiatric disorders. Therefore, early detection and subsequent intervention are important. Information on the age of onset (AOO) of anxiety disorders could be informative for the timing of prevention strategies. The aim of this chapter is to review and quantitatively synthesise previous findings on the AOO of anxiety disorders. We extended data of a previous meta-analysis of our research group (de Lijster et al. 2017) with a literature search of studies published between October 2014 and June 2017. Anxiety disorders in general were found to have their mean onset at 21 years, which is earlier than the average onset of mood disorders and substance use disorders. However, the age period in which anxiety disorders develops is relatively broad. Separation anxiety disorder, specific phobia and social phobia have their onset in childhood and adolescence, whereas agoraphobia, obsessive–compulsive disorder, post-traumatic stress disorder and panic disorder have their onset in early adulthood. Generalised anxiety disorder had the latest mean onset at almost 35 years

Predictors of subjective health status 10 years post-PCI

Background: Subjective health status is an increasingly important parameter to assess the effect of percutaneous coronary intervention (PCI) in clinical practice. Aim of this study was to determine medical and psychosocial predictors of poor subjective health status over a 10 years' post-PCI period. Methods: We included a series of consecutive PCI patients (n = 573) as part of the RESEARCH registry, a Dutch single-center retrospective cohort study. Results: These patients completed the 36-item Short-Form Health Survey (SF-36) at baseline and 10 years post-PCI. We found 6 predictors of poor subjective health status 10 years post-PCI: SF-36 at baseline, age, previous PCI, obesity, acute myocardial infarction as indication for PCI, and diabetes mellitus (arranged from most to least numbers of sub domains). Conclusions: SF-36 scores at baseline, age, and previous PCI were significant predictors of subjective health status 10 years post-PCI. Specifically, the SF-36 score at baseline was an important predictor. Thus assessment of subjective health status at baseline is useful as an indicator to predict long-term subjective health status. Subjective health status becomes better by optimal medical treatment, cardiac rehabilitation and psychosocial support. This is the first study determining predictors of subjective health status 10 years post-PCI