Gonadectomy in conditions affecting sex development: a registry-based cohort study.

OBJECTIVES: To determine trends in clinical practice for individuals with DSD requiring gonadectomy. DESIGN: Retrospective cohort study. METHODS: Information regarding age at gonadectomy according to diagnosis; reported sex; time of presentation to specialist centre; and location of centre from cases reported to the International DSD Registry and who were over 16 years old in January 2019. RESULTS: Data regarding gonadectomy were available in 668 (88%) individuals from 44 centres. Of these, 248 (37%) (median age (range) 24 (17, 75) years) were male and 420 (63%) (median age (range) 26 (16, 86) years) were female. Gonadectomy was reported from 36 centres in 351/668 cases (53%). Females were more likely to undergo gonadectomy (n = 311, P < 0.0001). The indication for gonadectomy was reported in 268 (76%). The most common indication was mitigation of tumour risk in 172 (64%). Variations in the practice of gonadectomy were observed; of the 351 cases from 36 centres, 17 (5%) at 9 centres had undergone gonadectomy before their first presentation to the specialist centre. Median age at gonadectomy of cases from high-income countries and low-/middle-income countries (LMIC) was 13.0 years (0.1, 68) years and 16.5 years (1, 28), respectively (P < 0.0001) with the likelihood of long-term retention of gonads being higher in LMIC countries. CONCLUSIONS: The likelihood of gonadectomy depends on the underlying diagnosis, sex of rearing and the geographical setting. Clinical benchmarks, which can be studied across all forms of DSD will allow a better understanding of the variation in the practice of gonadectomy.

Factores facilitadores y obstaculizadores para la investigación de enfermeras clínicas en Santiago de Chile / Facilitating factors and barriers for clinical research by nurses in Santiago, Chile

INTRODUCCIÓN: La investigación científica en enfermería aporta al conocimiento que sustenta el quehacer profesional y la autonomía de la profesión, mejora la calidad de atención en la gestión del cuidado del paciente. La literatura ha mostrado escasa producción científica de enfermería en los profesionales que trabajan en el área intrahospitalaria. OBJETIVO: Conocer los factores facilitadores y las barreras que impiden el desarrollo de la investigación científica en el profesional de enfermería. MÉTODO: Investigación descriptiva de corte transversal, los datos se obtuvieron al aplicar un instrumento español ya validado vía on line, aplicado a 71 enfermeras previo consentimiento informado y aprobación del comité de ética. Los datos fueron analizados por SPSS 15.0 y representados en tablas y gráficos. RESULTADOS: El 87,1% de los encuestados mostró una actitud positiva hacia la investigación donde la motivación es importante. Los conocimientos y cursos de posgrados facilitan el investigar, los resultados muestran que solo un 45,7% cree tener conocimientos para investigar y un 80% carece de formación en posgrado. Son barreras importantes a la hora de investigar la carga asistencial en un 65,7% y el no disponer del tiempo suficiente, 72,9%. CONCLUSIONES: Los factores facilitadores y obstaculizadores para la investigación de enfermería son similares a los reportados en otras publicaciones. Identificarlos y corregirlos permitiría formar profesionales más motivados y críticos, insertos en estructuras organizacionales y administrativas que los apoyen, permitiendo que la investigación sea la plataforma para que enfermería pueda contribuir a la calidad y gestión en el cuidado de los pacientes

INTRODUCTION: Scientific research by nurses provides new knowledge that is helpful for the professional autonomy, as well as improving the quality of patient care. It has been demonstrated in the literature that clinical nurses have minimal participation in scientific research. OBJECTIVE: To recognise the factors that facilitate or make it difficult to conduct scientific research in the clinical nurse community. METHOD: A cross-sectional descriptive study was conducted on a cohort of 71 clinical nurses, by applying a validated on-line questionnaire, after informed consent and Ethics Committee approval was obtained. Data results were analysed using SPSS 15.0 and presented with graphs and tables. RESULTS: The large majority (87.1%) of those surveyed had a positive attitude towards research, and motivation was the key factor to initiate it. The level of knowledge and the post-graduate degrees facilitated research projects. Only 45.7% believed that they had sufficient knowledge to perform research, and 80% of clinical nurses do not have advanced degrees. Important barriers for starting research are health care burden (65.7%), and not having enough time (72.9%). CONCLUSIONS: The factors that facilitate or make it difficult for research by nurses are similar to those reported in others studies. To recognise and fix them could lead to educating more critical and motivated nurses, with administrative and organisational structures that support and motivate them to perform research, as well as providing a nursing research database in order to contribute to the quality of care for patients