Survey of professionals' expectations of developmental task achievement of cystic fibrosis self-care in children

We surveyed 174 professionals with at least 6 months of experience working with children and adolescents with cystic fibrosis (CF), to obtain estimates of ages at which 50% of children with CF may be able to perform each of 44 self-care behaviors related to the treatment of CF. Respondents were 63 physicians, 36 nurses, 24 dietitians, 18 respiratory therapists, 17 nurse practitioners, 10 social workers, and 4 psychologists, who had a mean of 11.4 years (SD = 7.5) of experience working with pediatric patients with CF. Mean age estimates for self-care behaviors ranged from 5.5–13.9 years. For each item, responses varied among respondents, as reflected by a mean standard deviation of 2.75 years for all behaviors. Analyses of concordance suggested a high level of agreement among respondents for the order of mastery of specific skills related to diet and enzymes use only. To date, there are no empirically defined age estimates for when children with CF may be able to perform specific self-care behaviors involved in the management of CF. This survey is the first step in generating age estimates for self-care independence in CF. Future research should conduct an objective assessment of children's CF knowledge and skill in performing these behaviors, and compare these findings to the age estimates offered in this study. Pediatr Pulmonol. 2005; 40:135–140. © 2005 Wiley-Liss, Inc.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/48705/1/20262_ftp.pd

Optimising biomarkers for accurate ependymoma diagnosis, prognostication and stratification within International Clinical Trials: A BIOMECA study

BACKGROUND: Accurate identification of brain tumour molecular subgroups is increasingly important. We aimed to establish the most accurate and reproducible ependymoma subgroup biomarker detection techniques, across 147 cases from International Society of Pediatric Oncology (SIOP) Ependymoma II trial participants, enrolled in the pan-European "Biomarkers of Ependymoma in Children and Adolescents (BIOMECA)" study. METHODS: Across six European BIOMECA laboratories we evaluated epigenetic profiling (DNA methylation array); immunohistochemistry (IHC) for nuclear p65-RELA, H3K27me3, and Tenascin-C; copy number analysis via FISH and MLPA (1q, CDKN2A), and MIP and DNA methylation array (genome-wide copy number evaluation); analysis of ZFTA- and YAP1-fusions by RT-PCR and sequencing, Nanostring and break-apart FISH. RESULTS: DNA Methylation profiling classified 65.3% (n=96/147) of cases as EPN-PFA and 15% (n=22/147) as ST-ZFTA fusion-positive. Immunohistochemical loss of H3K27me3 was a reproducible and accurate surrogate marker for EPN-PFA (sensitivity 99-100% across three centres). IHC for p65-RELA, FISH, and RNA-based analyses effectively identified ZFTA- and YAP1- fused supratentorial ependymomas. Detection of 1q gain using FISH exhibited only 57% inter-centre concordance and low sensitivity and specificity whilst MIP, MLPA and DNA methylation-based approaches demonstrated greater accuracy. CONCLUSIONS: We confirm, in a prospective trial cohort, that H3K27me3 immunohistochemistry is a robust EPN-PFA biomarker. Tenascin-C should be abandoned as a PFA marker. DNA methylation and MIP arrays are effective tools for copy number analysis of 1q gain, 6q and CDKN2A loss whilst FISH is inadequate. Fusion detection was successful, but rare novel fusions need more extensive technologies. Finally, we propose test sets to guide future diagnostic approaches

Improving risk management for violence in mental health services: a multimethods approach

contractual_start_date: 07-2008 editorial_review_begun: 07-2014 accepted_for_publication: 06-2015contractual_start_date: 07-2008 editorial_review_begun: 07-2014 accepted_for_publication: 06-2015contractual_start_date: 07-2008 editorial_review_begun: 07-2014 accepted_for_publication: 06-2015contractual_start_date: 07-2008 editorial_review_begun: 07-2014 accepted_for_publication: 06-201

Health Care for Youth Involved with the Correctional System

Adolescents with involvement in the correctional system have significant health risks and needs. Professional guidelines and policies related to health services in correctional settings can help health care providers who work in youth detention facilities and those who see youth for follow-up care after incarceration. Several challenges exist to providing care in detention facilities, but overcoming these barriers to optimally serve youth is critical. When youth are released to their homes, community providers must understand the extent of care offered in detention facilities, the unique considerations for youth on probation, and the aspects of follow-up care that should be addressed