BACKGROUND Discrepancy between self-reports and parent-proxy reports of adolescent health-related quality of life (HRQoL) has been repeatedly acknowledged in the literature as the proxy problem. However, little is known about the extent and direction of this discrepancy. The purpose of this study is to explore to what extent and in what direction HRQoL… (More)
BACKGROUND The purpose of this study was to describe the interventions implemented in a quality improvement programme to improve transitional care and evaluate its effectiveness in reducing bottlenecks as perceived by professionals and improving chronically ill adolescents' experiences with care delivery. METHODS This longitudinal study was undertaken… (More)
BACKGROUND The Camp COOL programme aims to help young Dutch people with end-stage renal disease (ESRD) develop self-management skills. Fellow patients already treated in adult care (hereafter referred to as 'buddies') organise the day-to-day program, run the camp, counsel the attendees, and also participate in the activities. The attendees are young people… (More)
BACKGROUND As important users of health care, adolescents with chronic conditions deserve to be consulted about their experiences and expectations. This study aimed to explore chronically ill adolescents' preferences regarding providers' qualities, and outpatient and inpatient care. Furthermore, suggestions for improvement of service delivery were… (More)
BACKGROUND Today, patients are expected to take an active role in the form of self-management. Given the burden of a rheumatic disorder, the patients cannot be expected to self-manage on their own. In order to develop self-management interventions that fit patients' needs and preferences, it is essential to examine patients' perspective on how support can… (More)
INTRODUCTION To support young people in their transition to adulthood and transfer to adult care, a number of interventions have been developed. One particularly important intervention is the transition clinic (TC), where paediatric and adult providers collaborate. TCs are often advocated as best practices in transition care for young people with chronic… (More)
De Groei-wijzer werd in eerste instantie ontwikkeld voor kinderen met een functiebeperking (een revalidatie-diagnose) en is oorspronkelijk een Canadese methodiek (Skills for Growing up Ready). De Nederlandse vertaling
Managing transition. Support for individuals at key point of change explores a range of transitions commonly encountered by those who receive support from health and social services. The focus of the book is on the individual experiencing these transitions, when he or she moves across organisational boundaries or from childhood to adulthood, experiences… (More)
Introduction: In the Netherlands, adolescents with chronic conditions are often ill prepared for their transition to adult care. Services are not geared toward adolescents' needs and preferences. To bridge these gaps, a four-year innovation programme, On Your Own Feet Ahead, was started in 2008.
Introduction: Despite growing numbers of adolescents with chronic conditions, transition from paediatric to adult care has received little attention in the Netherlands.