A Mixed Method Study in Young Children Participating in Clinical Research During A Kidney Transplantation Trajectory.

Introduction: Regulations designed to protect children participating in clinical research often restrict the availability of research data necessary for the development of age-specific therapies and drug dosing. Few data exist on how children experience participation in clinical research, and studies investigating young children undergoing an intensive medical treatment are lacking.

Methods: Mixed methods with semi-structured interviews and DISCO-RC questionnaires were used to explore young children's and their parents' experiences in clinical research participation during a kidney transplantation trajectory.

Health-related quality of life 6 months after pediatric intensive care unit admission for bronchiolitis: a prospective single-center cohort study.

Unlabelled: Health-Related Quality of Life (HRQoL) after Pediatric Intensive Care Unit (PICU) admission is considered a valuable outcome measure. Yet, data on HRQoL after PICU admission are scarce and often collected in heterogeneous patient groups. The current study aimed to evaluate HRQoL in children with bronchiolitis 6 months after PICU admission, which represents a homogenous patient group.

Sugarsquare, a Web-Based Patient Portal for Parents of a Child With Type 1 Diabetes: Multicenter Randomized Controlled Feasibility Trial.

Background: Raising a child with type 1 diabetes (T1D) means combining the demands of the disease management with everyday parenting, which is associated with increased levels of distress. A Web-based patient portal, Sugarsquare, was developed to support parents, by providing online parent-professional communication, online peer support and online disease information.

Objective: The first aim of this study was to assess the feasibility of conducting a multicenter, randomized controlled trial in Dutch parents of a child with T1D.

Behavioral, cognitive, and motor performance and physical development of five-year-old children who were born after intracytoplasmic sperm injection with the use of testicular sperm.

Objective: To evaluate at the age of 5 years the behavioral, cognitive, and motor performance and physical development of children born after testicular sperm extraction (TESE) and intracytoplasmic sperm injection (ICSI).

Design: A prospective longitudinal cohort study.

Setting: Two university medical centers.

Parents' experiences, needs, and preferences in pediatric diabetes care: Suggestions for improvement of care and the possible role of the Internet. A qualitative study.

Purpose: To investigate the needs and preferences of parents of children with type 1 diabetes (T1D) concerning pediatric diabetes care and use of Internet in care.

Design And Methods: Parents of 34 children, aged 2-12, with T1D participated in seven focus group interviews.

Results: Analysis revealed provision of tailored care, disease information, peer support, and accessibility of healthcare professionals as major needs in parents.

Implementation of quality of life monitoring in Dutch routine care of adolescents with type 1 diabetes: appreciated but difficult.

Objective: Monitoring quality of life (QoL) improves well-being and care satisfaction of adolescents with type 1 diabetes. We set out to evaluate the implementation of the program DAWN (Diabetes Attitudes Wishes and Needs) MIND-Youth (Monitoring Individual Needs in Young People With Diabetes) (DM-Y), in which Dutch adolescents' QoL is assessed with the MIND Youth Questionnaire (MY-Q) and its outcomes are discussed. Successful implementation of DM-Y warrants close study of experienced barriers and facilitators as experienced by diabetes care teams as well as adolescents and parents.

Goal disturbance and coping in children with type I diabetes mellitus: relationships with health-related quality of life and A1C.

Objective: Our first objective was to compare the health-related quality of life (HRQoL) of children with type 1 diabetes mellitus (8-12 years) with that of a healthy reference group, and to compare glycated hemoglobin (A1C) values of these children to recommended guidelines. Our second objective was to examine how goal disturbance and coping behaviour were related to HRQoL and A1C.

Method: Forty-three children, 8-12 years of age, completed a set of questionnaires that assessed generic and diabetes-specific HRQoL, goal disturbance and coping behaviour.

The interrelationships among paternal and maternal parenting stress, metabolic control, and depressive symptoms in adolescents with type 1 diabetes mellitus.

Objective: To examine the relationship between paternal and maternal parenting stress, metabolic control, and depressive symptoms in adolescents with type 1 diabetes mellitus (T1DM).

Methods: 151 adolescents with T1DM (mean age 14.9 ± 1.

Can one question be a useful indicator of psychosocial problems in adolescents with diabetes mellitus?

Aim: A screening tool for psychosocial functioning of adolescents with diabetes is unavailable. We investigated whether one question using a Visual Analogue Scale that indicates a rating from the worst (0) to the best possible life (10) is related to standardized indices of psychosocial functioning and well-being in adolescents with diabetes mellitus type 1 (T1DM).

Method: One hundred and fifty-one adolescents with T1DM and 122 healthy peers between 12 and 18 years of age were asked to rate their life on a scale, varying from 0 to 10.