The iBerry study: a longitudinal cohort study of adolescents at high risk of psychopathology.

The iBerry study is a population-based cohort study designed to investigate the transition from subclinical symptoms to a psychiatric disorder. Adolescents were selected based on their self-reported emotional and/or behavioral problems assessed by completing the strengths and difficulties questionnaire-youth (SDQ-Y) in their first year of high school. A total of 16,736 SDQ-Y questionnaires completed in the academic years 2014-2015 and 2015-2016 by students in the greater Rotterdam area in the Netherlands were screened. A high-risk group of adolescents was then selected based on the 15% highest-scoring adolescents, and a low-risk group was randomly selected from the 85% lowest-scoring adolescents, with a 2.5:1 ratio between the number of high-risk and low-risk adolescents. These adolescents were invited to come with one parent for a baseline visit consisting of interviews, questionnaires, neuropsychological tests, and biological measurements to assess determinants of psychopathology. A total of 1022 high-risk and low-risk adolescents (mean age at the first visit: 15.0 years) enrolled in the study. The goal of the iBerry study is to follow these adolescents for a 10-year period in order to monitor any changes in their symptoms. Here, we present the study design, response rate, inclusion criteria, and the characteristics of the cohort; in addition, we discuss possible selection effects. We report that the oversampling procedure was successful at selecting a cohort of adolescents with a high rate of psychiatric problems based on comprehensive multi-informant measurements. The future results obtained from the iBerry Study will provide new insights into the way in which the mental health of high-risk adolescents changes as they transition to adulthood. These findings will therefore facilitate the development of strategies designed to optimize mental healthcare and prevent psychopathology.

Psychosocial well-being of long-term survivors of pediatric head-neck rhabdomyosarcoma.

BACKGROUND: Head and neck rhabdomyosarcoma (HNRMS) survivors are at risk to develop adverse events (AEs). The impact of these AEs on psychosocial well-being is unclear. We aimed to assess psychosocial well-being of HNRMS survivors and examine whether psychosocial outcomes were associated with burden of therapy. PROCEDURE: Sixty-five HNRMS survivors (median follow-up: 11.5 years), treated in the Netherlands and the United Kingdom between 1990 and 2010 and alive ≥2 years after treatment visited the outpatient multidisciplinary follow-up clinic once, in which AEs were scored based on a predefined list according to the Common Terminology Criteria for Adverse Events. Survivors were asked to complete questionnaires on health-related quality of life (HRQoL; PedsQL and YQOL-FD), self-perception (KIDSCREEN), and satisfaction with appearances (SWA). HRQoL and self-perception scores were compared with reference values, and the correlation between physician-assessed AEs and psychosocial well-being was assessed. RESULTS: HNRMS survivors showed significantly lower scores on PedsQL school/work domain (P ≤ 0.01, P = 0.02, respectively), YQOL-FD domains negative self-image and positive consequences (P ≤ 0.01, P = 0.04, respectively) compared with norm data; scores on negative consequences domain were significantly higher (P = 0.03). Over 50% of survivors negatively rated their appearances on three or more items. Burden of AEs was not associated with generic HRQoL and self-perception scores, but was associated with disease-specific QoL (YQOL-FD). CONCLUSION: In general, HRQoL in HNRMS survivors was comparable to reference groups; however, survivors did report disease-specific consequences. We therefore recommend including specific questionnaires related to difficulties with facial appearance in a systematic monitoring program to determine the necessity for tailored care.