Stability and change of illness identity in Belgian youth with type 1 diabetes: a latent transition analysis.

Background: Youth with type 1 diabetes (T1D) are tasked with integrating their illness into their identity, a process conceptualized as illness identity. To date, longitudinal person-centered studies are lacking that substantiate qualitative research capturing illness identity as a process.

Purpose: First, the current study examined patterns of stability and change among illness identity profiles in youth with T1D.

Correction: The longitudinal association between patient empowerment and patient-reported outcomes: What is the direction of effect?

[This corrects the article DOI: 10.1371/journal.pone.

Atrial arrhythmia and heart failure in adult patients with congenital heart disease: a retrospective cohort study.

Background: Atrial arrhythmias (AA) and heart failure (HF) are major causes of hospitalisation in adult congenital heart disease (ACHD). This study aimed to evaluate the temporal relationship between AA and HF onset, the association between HF and the success of radiofrequency ablation (RFA), and how HF influences outcomes in patients with AA.

Methods: In this single-centre retrospective cohort study, data from 3995 patients with ACHD were analysed.

A retrospective study: Long term prognosis in adults with PA-VSD-MAPCAs.

Background: Pulmonary Atresia, Ventricular Deptal Defect, and Major Aortopulmonary Collateral Arteries (PA-VSD-MAPCAs) is a congenital cyanotic heart defect with poor prognosis. Due to its complex and highly variable anatomy, the best treatment plan is not clear. We aimed (1) to investigate the survival of PA-VSD-MAPCAs patients according to the underlying original anatomy and treatment strategy, and (2) to evaluate life expectancy between patients with or without severe hypoplastic native pulmonary arteries (NPAs) after surgical versus non-surgical treatment.

Which factors affect post-transfer gaps in follow-up care? A qualitative study of the insights of healthcare providers in Sweden and Belgium.

Background: Young people with congenital heart disease (CHD) are frequently affected by discontinued follow-up when transferring from paediatric to adult care. Identified predictors for discontinuation include mostly patient-related factors, and further knowledge of hospital and healthcare system factors is needed.

Aim: This study aims to explore patient-related, hospital-related and healthcare system-related factors affecting continued follow-up care after transfer, as perceived and experienced by paediatric cardiology and adult CHD (ACHD) healthcare providers (HCPs) in Sweden and Belgium.

Are the content and usability of a new direct observation tool adequate for assessing competency in delivering person-centred care: a think-aloud study with patients and healthcare professionals in Sweden.

Objective: To evaluate the content and usability of a new direct observation tool for assessing competency in delivering person-centred care based on the Gothenburg Centre for Person-Centred Care (gPCC) framework.

Design: This is a qualitative study using think-aloud techniques and retrospective probing interviews and analyzed using deductive content analysis.

Setting: Sessions were conducted remotely via Zoom with participants in their homes or offices.

The Role of the Clinical Psychologist in the Care of Adults With Cardiovascular Disease.

Cardiovascular disease (CVD) is on the rise globally and, along with mental health conditions, will represent the largest public health burden, especially in a world impacted by climate change. Behavior, psychological mechanisms, and CVD are closely correlated. Evidence-based psychological interventions targeting behavior and psychological mechanisms exist across the CVD spectrum.

Clinical Risk Assessment and Prediction in Congenital Heart Disease Across the Lifespan: JACC Scientific Statement.

Congenital heart disease (CHD) comprises a range of structural anomalies, each with a unique natural history, evolving treatment strategies, and distinct long-term consequences. Current prediction models are challenged by generalizability, limited validation, and questionable application to extended follow-up periods. In this JACC Scientific Statement, we tackle the difficulty of risk measurement across the lifespan.

Identity Functioning in Patients with an Eating Disorder: Developmental Trajectories throughout Treatment.

Increasing research has indicated a strong association between identity functioning and eating disorder (ED) symptomatology. However, a detailed investigation of identity throughout ED treatment is lacking. The present longitudinal study examined identity in inpatients with an ED and explored its simultaneous change with ED symptomatology throughout treatment.

Beyond validation: getting wearable activity trackers into cardiovascular care-a discussion paper.

This paper addresses the challenge of integrating wearable activity trackers (WATs) into cardiovascular disease care. Despite evidence supporting the use of trackers for monitoring and promoting physical activity, implementation challenges persist in clinical settings. The paper emphasizes the lack of systematic, evidence-based implementation approaches for integrating trackers.

Measuring the impact of pruritus in patients with epidermolysis bullosa: evaluation with an itch-specific instrument.

Pruritus is one of the most debilitating symptoms for patients with epidermolysis bullosa (EB). This study aimed to assess the burden of itch and to address its dimensions across patients with EB. Forty-six patients with EB were recruited from the Saudi EB registry to participate.

Personal and illness identity in youth with type 1 diabetes: Developmental trajectories and associations.

Objective: Having Type 1 diabetes (T1D) may complicate the normative developmental task of personal identity formation in adolescence and emerging adulthood. Besides exploring and committing to identity choices in different life domains, youth with T1D need to integrate their illness into their identity, a process labeled as illness identity. The present study examined whether youth with T1D belonging to different personal identity trajectory classes developed differently on four illness identity dimensions (acceptance, enrichment, engulfment, rejection).

Biological Age in Congenital Heart Disease-Exploring the Ticking Clock.

Over the past 50 years, there has been a major shift in age distribution of patients with congenital heart disease (CHD) thanks to significant advancements in medical and surgical treatment. Patients with CHD are, however, never cured and face unique challenges throughout their lives. In this review, we discuss the growing data suggesting accelerated aging in this population.

Left atrial strain in patients after arterial switch operation for transposition of the great arteries.

Background: Left atrial (LA) strain, comprising LA reservoir, conduit and contractile function could add mechanistic information of patients after arterial switch operation (ASO) for transposition of the great arteries (TGA). ASO patients might have abnormal ventriculoarterial coupling, which makes them vulnerable to left ventricle (LV) dysfunction and results in reduced exercise capacity. This explorative study aimed to evaluate the relation between LA strain, atrial size, ventricular function, and exercise data obtained by cardiopulmonary exercise testing (CPET).

Biomarkers in transposition of the great arteries after arterial switch operation: A pilot trial with deep phenotyping.

Introduction: Transposition of the great arteries (TGA) is a cyanotic congenital heart defect for which the arterial switch operation (ASO) is the preferred surgical repair. This study wanted to investigate whether a panel of biomarkers could identify morphologic as well as hemodynamic changes obtained by cardiac magnetic resonance (CMR).

Methods: Forty-four adult patients were included.

Development and psychometric evaluation of TEXP-Q: a questionnaire measuring transition and transfer experiences in emerging adults with type 1 diabetes.

Background: During transition to adulthood and transfer to adult healthcare, emerging adults with chronic conditions are at risk of deteriorating disease control, well-being, and acute, as well as long-term complications. Despite an increasing call for person-centred healthcare services attuned to young peoples' needs, few validated instruments exist pinpointing adolescents' and emerging adults' experiences of preparation for transition and transfer. Thus, the overarching purpose of this study was to develop a person-centred, clinically applicable instrument (Transitional care EXPeriences Questionnaire, TEXP-Q) adjustable to different chronic conditions, although the focus in the present study was Type 1 Diabetes.