Background For young people with rare conditions associated with intellectual disability, the transfer from paediatric to adult healthcare providers is often complicated. European Reference Network ERN-ITHACA (Intellectual disability, TeleHealth, Autism and Congenital Anomalies) on Rare Congenital Malformations …

Sicca syndrome (dry mouth and dry eyes) occurs predominantly due to the side effects of medication, systemic dis eases (Sjögren’s disease), and radiotherapy of the head and neck region. Sicca complaints decrease the quality of life, cause sleep disturbances, and affect overall health. This systematic …

Introduction: Health-related quality of life (HRQoL) in adult people with HIV is lower than that of the general population. Previously, no differences were detected in HRQoL of Dutch children with perinatal HIV (PHIV) compared with norm groups. In this study, we compared HRQoL of PHIV young adults (PHIV-YA, …

Aims: To detect differences in speech fluency in separate primaryprogressive aphasia syndromes (PPA) using automated analysistechniques. The resulting linguistic features are evaluated for theiruse in a predictive model to identify common patterns in speakerswith PPA. As fluency is observable in audio …

The aim of the present study was to investigate the nature and prevalence of nonspecific somatic symptoms, pain and catastrophizing in children with Heritable Connective Tissue Disorders (HCTD), and to determine their association with disability. This observational, multicenter study included 127 children, …

Objectives: Health problems in patients with heritable connective tissue disorders (HCTD) are diverse and complex and might lead to lower physical activity (PA) and physical fitness (PF). This study aimed to investigate the PA and PF of children with heritable connective tissue disorders (HCTD). Methods: …

The psychosocial consequences of growing up with Heritable Connective Tissue Disorders (HCTD) are largely unknown. We aimed to assess Health-Related Quality of Life (HRQoL) and mental health of children and adolescents with HCTD. This observational multicenter study included 126 children, aged 4–18 years, …

Heritable Connective Tissue Disorders (HCTD) show an overlap in the physical features that can evolve in childhood. It is unclear to what extent children with HCTD experience burden of disease. This study aims to quantify fatigue, pain, disability and general health with standardized validated questionnaires. …

BackgroundMalnutrition, sarcopenia and cachexia are clinical wasting syndromes characterised by muscle loss. Systematic monitoring by body composition assessment (BCA) is recommended for the diagnosis, treatment and monitoring of the syndrome(s). This study investigated practices, competency, and attitudes …

BACKGROUND: Acute hospitalization may lead to posthospital syndrome, but no studies have investigated how this syndrome manifests and geriatric syndromes are often used as synonym. However, studies on longitudinal associations between syndromes and adverse outcomes are scarce. We aimed to analyze longitudinal …