Siblings of people with intellectual and developmental disabilities: a systematic review on their quality of life perceptions in the context of a family.

Background: Within Family Quality of Life (FQoL) research, perceptions of siblings of people with intellectual and developmental disabilities (IDD) in the setting of a family are limited studied. The aim of this systematic review is to find relevant information about quality of life perceptions of siblings of people with IDD. Two main questions guided this review: (1) what are the siblings' perceptions on quality of life in the context of their family? (2) what needs and challenges do siblings have regarding their quality of life as siblings of individuals with IDD? Methods: A systematic search was conducted using Scopus, PsycInfo, ERIC and Web of Science databases, involving keywords and combinations such as Intellectual and Developmental Disabilities, Family Quality of Life and siblings. Results: We identified a total of 48 articles. Analysis showed siblings' diverse perceptions of quality of life and their multiple experiences, needs, desires and concerns. Conclusions: Results contribute to knowledge about the quality of life and well-being of siblings of all ages. Suggestions for support, interventions and future research are given, such as the necessity of educating local communities regarding siblings' needs, the study of siblings' experiences in different cultural contexts or the importance of conducting research with clear theoretical frameworks and focused on the multiple components that might be influencing siblings' quality of life.

Presurgery motor level assessment for prediction of motor level at birth in fetuses undergoing prenatal repair of open spina bifida: time to abandon anatomical level in counseling.

OBJECTIVES: First, to investigate the correlation between prenatal presurgery anatomical and motor levels of the lesion with motor level at birth in cases undergoing prenatal repair of open spina bifida and, second, to identify factors leading to a loss of two or more motor levels between the presurgery and postnatal assessments. METHODS: This was an observational study of singleton pregnancies undergoing prenatal repair of open spina bifida, conducted between March 2011 and May 2022. All fetuses underwent an ultrasound assessment at 20-24 weeks of gestation to determine the motor and anatomical levels of the lesion before surgery. The anatomical level of the lesion was defined as the highest open posterior vertebral arch. The motor level was determined by systematic observation of the lower limb movements and was defined as the most distal active muscle present. Prenatal repair was performed at 23-26 weeks. At birth, motor level was assessed by a rehabilitation specialist by physical examination. Cases of intrauterine death or termination of pregnancy and those delivered at other sites were excluded from the neonatal assessment. The agreement between presurgery motor level and motor level at birth, and between presurgery anatomical level and motor level at birth, was assessed using the weighted kappa index (wκ). Logistic regression analysis was used to assess factors leading to a loss of two or more motor levels between the presurgery and postnatal assessments. RESULTS: Presurgery motor and anatomical levels were assessed in 61 fetuses at a median gestational age of 22.7 (interquartile range (IQR), 21.6-24.4) weeks. Prenatal repair was performed at a median gestational age of 24.6 (IQR, 23.7-25.7) weeks. Motor level at birth was assessed in 52 neonates after exclusion of nine fetuses due to loss to follow-up or fetal loss. There was moderate agreement between presurgery motor level and motor level at birth (wκ = 0.42; 95% CI, 0.21-0.63), with a median difference of 0 (IQR, -2 to 9) levels. Factors leading to a loss of two or more motor levels between the presurgery ultrasound assessment and postnatal examination were higher presurgery anatomical level (odds ratio (OR), 0.59 (95% CI, 0.35-0.98); P = 0.04) and larger difference between the anatomical and motor levels before surgery (OR, 1.85 (95% CI, 1.12-3.06); P = 0.017). None of the other ultrasound, surgery-related or neonatal variables assessed was associated significantly with a loss of two or more motor levels. There was slight agreement between the presurgery anatomical level of the lesion and motor level at birth (wκ = 0.07; 95% CI, -0.02 to 0.15). CONCLUSIONS: There is moderate agreement between fetal motor level of the lesion before prenatal repair of open spina bifida and motor level at birth, as opposed to only slight agreement between presurgery anatomical level and motor level at birth. A loss of two or more motor levels between the presurgery and postnatal assessments is associated with a higher presurgery anatomical level and with a larger difference between the presurgery anatomical and motor levels. Consequently, motor level, rather than the anatomical level, should be used for prenatal counseling. © 2023 The Authors. Ultrasound in Obstetrics & Gynecology published by John Wiley & Sons Ltd on behalf of International Society of Ultrasound in Obstetrics and Gynecology.

Fetal heart rate monitoring during fetoscopic repair of open spinal neural tube defects: a single-centre observational cohort study.

BACKGROUND: During fetal surgery, the haemodynamic stability of the fetus depends on the haemodynamic stability of the mother. The primary objective of this study was to assess changes in fetal heart rate (FHR) throughout the different stages of surgery. The secondary objective was to assess potential changes in maternal physiological parameters and their association with FHR. METHODS: This was a single-center observational cohort study conducted between 2015 and 2019 in 26 women undergoing intra-uterine fetoscopic repair of open spina bifida. The primary outcome was FHR. Maternal physiologic parameters were measured at the beginning, during and after surgery. The linear mixed-effects model fitted by maximum likelihood was used to assess changes in each variable at specific times throughout the surgery, and the repeated measures correlation coefficient was used to study the association between FHR and maternal physiological parameters. RESULTS: One (3.8%) case of fetal bradycardia (FHR <110 beats per minute) required the administration of intramuscular atropine. No other significant FHR changes were observed during surgery. Maternal oesophageal temperature (P <0.001), lactate levels (P=0.002), and mean arterial pressure (P=0.016) changed significantly during surgery, although none of these changes was clinically relevant. The FHR showed a significant association with maternal carbon dioxide tension (r=0.285, 95% CI 0.001 to 0.526) and maternal heart rate (r=0.302, 95% CI 0.025 to 0.535). CONCLUSION: The FHR remained stable during intra-uterine fetoscopic repair of open spina bifida. Maternal carbon dioxide tension and heart rate may have a mild influence on FHR.

Impact of the intellectual disability severity in the Spanish Personal Outcomes Scale.

BACKGROUND: The interest in measuring quality of life (QoL) in persons with intellectual disability (ID) has brought about a number of QoL measurements for this population. These measurements need to address two issues that have contributed to enhancing the current instruments. First, the necessity to develop measures with adequate psychometric properties, which has been discussed in recent studies, and second, the agreement between experts in analysing objective and subjective perspectives, as well as the use of self-report to include the participation of the person with ID. The question that we set out to investigate in this paper is whether the measurements function properly for the person with ID, independent of their level of severity. We used the Spanish version of the Personal Outcomes Scale, as it is a psychometrically sound instrument and includes three sources of information (the person with ID, a professional and a family member). METHOD: The sample was composed of 529 persons with ID (296 men, representing 55.95% of the total sample, and 233 women, with Mage  = 35.03, SD = 10.82) from several regions of Spain, along with their professional of reference and a family member. The severity variable was estimated for each item based on estimations of differential item functioning. RESULTS: The results showed that several items were undervalued by the assessments if the severity of the ID was greater. Mainly, this difference was observed in the assessments by professionals and in the dimensions of rights, personal development and self-determination. CONCLUSIONS: This paper focuses on the uses and interpretations of the results of the QoL measurements in the Personal Outcomes Scale. The results indicate that, in our sample, when people with high levels of ID are assessed, the functioning of some items are affected by the severity of this disability. For correct use, these items must be interpreted on the basis of the results obtained. Additionally, it is necessary to thoroughly review the QoL indicators for persons with severe or profound ID.

Fetoscopic two-layer closure of open neural tube defects.

OBJECTIVE: Fetoscopy for closure of open neural tube defects (NTD) remains controversial, as the use of patches or single-layer closure is not considered to meet the standards of good neurosurgical reconstruction. In this study, we describe a fetoscopic two-layer (myofascial and skin) closure technique for the treatment of NTD in five patients and report the preliminary anatomical outcome at birth. METHODS: From February to September 2017, five pregnant women with a fetus with a NTD, including three cases of myelomeningocele and two cases of myelocele, were operated on using a fetoscopic two-layer closure technique. In this technique, with the uterus exteriorized and using three 10-Fr ports, the placode is dissected from the surrounding tissue and detethered, removing the cystic tissue. The skin is undermined by blunt dissection and the defect is sutured to the midline in two layers (myofascial and skin) using a running 4/0 resorbable barbed suture. RESULTS: Median gestational age at the procedure was 24 + 3 (range, 23 + 5 to 27 + 3) weeks. Surgery was successful in all cases, without any intraoperative complications. Median time in surgery was 180 (range, 140-180) min and median time for fetoscopy was 105 (range, 65-120) min. In terms of obstetric complications, three cases of premature rupture of membranes and one case of chorioamnionitis were recorded. Median gestational age at delivery was 34 + 1 (range, 25 + 4 to 37 + 2) weeks and two patients delivered vaginally. The closed defect was watertight with good quality tissue in all cases. CONCLUSION: Fetoscopic two-layer closure of NTD may improve the quality of the tissue covering the defect, diminishing the need for postnatal surgical revision, and preserving the well-documented beneficial effects of prenatal closure on the neural tissue and hindbrain herniation. However, this technique may not be appropriate for those cases with wide diastasis of the myofascial layer or with a low quantity of available tissue. Copyright © 2018 ISUOG. Published by John Wiley & Sons Ltd.

The Spanish version of the Self-Determination Inventory Student Report: application of item response theory to self-determination measurement.

BACKGROUND: A new measure of self-determination, the Self-Determination Inventory: Student Report (Spanish version), has recently been adapted and empirically validated in Spanish language. As it is the first instrument intended to measure self-determination in youth with and without disabilities, there is a need to further explore and strengthen its psychometric analysis based on item response patterns. METHOD: Through item response theory approach, this study examined item observed distributions across the essential characteristics of self-determination. RESULTS: The results demonstrated satisfactory to excellent item functioning patterns across characteristics, particularly within agentic action domains. Increased variability across items was also found within action-control beliefs dimensions, specifically within the self-realisation subdomain. CONCLUSIONS: These findings further support the instrument's psychometric properties and outline future research directions.

Item response theory analysis applied to the Spanish version of the Personal Outcomes Scale.

BACKGROUND: The study of measurements of quality of life (QoL) is one of the great challenges of modern psychology and psychometric approaches. This issue has greater importance when examining QoL in populations that were historically treated on the basis of their deficiency, and recently, the focus has shifted to what each person values and desires in their life, as in cases of people with intellectual disability (ID). Many studies of QoL scales applied in this area have attempted to improve the validity and reliability of their components by incorporating various sources of information to achieve consistency in the data obtained. The adaptation of the Personal Outcomes Scale (POS) in Spanish has shown excellent psychometric attributes, and its administration has three sources of information: self-assessment, practitioner and family. The study of possible congruence or incongruence of observed distributions of each item between sources is therefore essential to ensure a correct interpretation of the measure. The aim of this paper was to analyse the observed distribution of items and dimensions from the three Spanish POS information sources cited earlier, using the item response theory. METHOD: We studied a sample of 529 people with ID and their respective practitioners and family member, and in each case, we analysed items and factors using Samejima's model of polytomic ordinal scales. RESULTS: The results indicated an important number of items with differential effects regarding sources, and in some cases, they indicated significant differences in the distribution of items, factors and sources of information. CONCLUSIONS: As a result of this analysis, we must affirm that the administration of the POS, considering three sources of information, was adequate overall, but a correct interpretation of the results requires that it obtain much more information to consider, as well as some specific items in specific dimensions. The overall ratings, if these comments are considered, could result in bias.

Tethered cord in patients affected by anorectal malformations: a survey from the ARM-Net Consortium.

PURPOSE: The goal of this study was to determine the degree of consensus in the management of spinal cord tethering (TC) in patients with anorectal malformation (ARM) in a large cohort of European pediatric centers. METHODS: A survey was sent to pediatric surgeons (one per center) members of the ARM-Net Consortium. RESULTS: Twenty-four (86%) from ten different countries completed the survey. Overall prevalence of TC was: 21% unknown, 46% below 15, and 29% between 15 and 30%. Ninety-six agreed on screening all patients for TC regardless the type of ARM and 79% start screening at birth. Responses varied in TC definition and diagnostic tools. Fifty percent of respondents prefer ultrasound (US), 21% indicate either US or magnetic resonance (MRI) based on a pre-defined risk of presenting TC, and 21% perform both. Discrepancy exists in complementary test: 82% carry out urodynamic studies (UDS) and only 37% perform somatosensory-evoked potentials (SSEP). Prophylactic untethering is performed in only two centers (8%). CONCLUSIONS: Survey results support TC screening in all patients with ARM and conservative management of TC. There is discrepancy in the definition of TC, screening tools, and complementary test. Protocols should be developed to avoid such variability in management.

[Conservative management of liver trauma and its complications: current gold-standard]. / Tratamiento conservador de los traumatismos hepáticos y sus complicaciones: gold-standard actual.

INTRODUCTION: The liver is the second most frequently involved organ in abdominal trauma in children. The aim of this study was to review the characteristics of liver traumas (LT) in children, its treatment and complications. MATERIAL AND METHODS: Retrospective study of patients with LT treated between 2010-2014. We analyzed data regarding diagnosis, conservative management (CM), complications and treatment. RESULTS: Twenty-four patients of LT with a mean age of 9.8 years (SD: 3.4) were treated at our center. Liver injury degrees according to the Organ Injury Scale of American Association for Surgery of Trauma (AAST) were: grade I (4), grade II (6), grade III (8), grade IV (5) and grade V (1). CT angiography was performed in 23 patients. Four of the six patients with initial hemodynamic instability required blood transfusion; of those, two required angioembolization for active bleeding in extrahepatic locations and a third required damage control surgery. Three patients presented late-onset complications: 2 large size bilomas which underwent spontaneous resolution and a third patient with a right biloma and section of the left bile duct who required a multidisciplinary approach. Median hospital stay was 6 days (r 1-92). With a mean follow-up of 17.75 months (SD: 16.35) (r: 2-57) long-term survival was 96%. The patient who received surgery died due to a post-traumatic brain injury. CONCLUSION: CM seems to be the treatment of choice in LT regardless of injury degree. Surgery should be reserved for cases refractory to CM due to the associated high mortality.

INTRODUCCION: El hígado es el segundo órgano más afectado en traumatismos abdominales en edad pediátrica. El objetivo de este trabajo es revisar las características de los traumatismos hepáticos (TH), su tratamiento y complicaciones. MATERIAL Y METODOS: Estudio retrospectivo de pacientes con TH atendidos entre 2010 -2014. Analizamos datos referentes al diagnóstico, tratamiento conservador (TC), complicaciones y tratamiento de las mismas. RESULTADOS: Se trataron 24 casos de TH con una edad media de 9,8 años (DS: 3,4). Los grados de lesiones hepáticas según la Organ Injury Scale of American Association for Surgery of Trauma (AAST) fueron: grado I (4), grado II (6), grado III (8), grado IV (5) y grado V (1). Se realizó angio-TC en 23 pacientes. Cuatro de los 6 pacientes que presentaron inestabilidad hemodinámica inicial requirieron transfusión de hemoderivados; de éstos, 2 requirieron angioembolización por sangrado activo extrahepático y un tercero se intervino de forma urgente. Tres pacientes presentaron complicaciones tardías: 2 bilomas de gran tamaño que se resolvieron espontáneamente y un biloma derecho con sección de vía biliar izquierda que requirió un abordaje multidisciplinar. En los 3 casos se trataba de traumatismos de alto grado (2 grado IV, 1 grado V). La mediana de estancia hospitalaria fue de 6 días (r: 1-92). Con una media de seguimiento de 17,75 meses (DS: 16,35) (r: 2-57) la supervivencia global fue del 96%. El paciente que requirió cirugía falleció por el traumatismo craneoencefálico asociado. CONCLUSIONES: El TC parece ser de primera elección en los TH independientemente del grado aunque no está exento de complicaciones. La cirugía debe reservarse para los casos refractarios al TC dada la alta mortalidad que conlleva.

Neuralgia del pudendo: a propósito de 2 casos / Pudendal neuralgia. A report of 2 cases

La neuralgia del pudendo es una causa infradiagnosticada de dolor neuropático en la zona perineal. Se produce a raíz del atrapamiento del nervio pudendo en algún punto de su trayecto. Su diagnóstico de sospecha es fundamentalmente clínico y se confirma mediante electromiografía y/o la mejoría tras infiltraciones perineurales. El tratamiento recomendado es inicialmente conservador y, si fracasa, quirúrgico. La rehabilitacio¿n tanto precirugía como después de la intervención quirúrgica tiene un papel importante en esta patología, aunque la pauta a seguir no está bien establecida. Como médicos rehabilitadores debemos tener en cuenta el atrapamiento del nervio pudendo como posible causa de dolor crónico en la región genital. Presentamos los casos de 2 pacientes diagnosticadas de neuralgia del pudendo que fueron derivadas a nuestra consulta de rehabilitación ambulatoria para valoración de tratamiento (AU)

Pudendal neuralgia is an underdiagnosed cause of neuropathic pain in the perineal area. It is caused by pudendal nerve entrapment at some point. Diagnosis is mainly clinical, and confirmation is by electromyography and/or improvement after perineural infiltration. The recommended treatment is initially conservative and, if unsuccessful, surgery can be performed. Pre- and post-surgical rehabilitation plays an important role in this disease, although there is still no well-established protocol. Specialists in physical medicine and rehabilitation should consider pudendal nerve entrapment as a cause of chronic pain in the genital region. We present the cases of two patients diagnosed with pudendal neuralgia who were referred to our clinic for treatment evaluation (AU)

Avances en Cirugía pediátrica / Advances in Pediatric Surgery

Los avances de la cirugía pediátrica han sido paralelos a los de la pediatría. Elperfeccionamiento de los medios diagnósticos, los avances en las unidades de cuidados intensivos neonatales y pediátricas y anestesiología, así como en el campo de las infecciones, entre otros, han permitido operaciones quirúrgicas más agresivas y complejas por parte del cirujano pediátrico, haciendo posibles intervenciones antes impensables. El conocimeinto cada vez más preciso del comportameinto biológico y las bases genéticas de los distintos tumores pediátricos y la aparición de nuevos tratamientos multimodales también han mejorado espectacularmente el pronóstico de los niños oncológicos. Desde el punto de vista tecnológico, el desarrollo de la cirugía mínimamente invasiva, en particular con la fabricación del instrumetnal adaptado a los niños, ha ido ampliando el espectro de las indicaciones a nivel pédiatrico, inlcuidos los neonatos, realizándose en la actualidad un gran número de procedimientos. De igual forma, la cirugía robótica es un nuevo instrumento que aumenta las capacidades y destreza del cirujano, y disminuye las dificultades y complicaciones de la laparoscopia. Su utilización está suponiendo otra revolución, tal como ha ocurrido con la laparoscopia. La cirugía fetal ya no es una ficción, sino una realidad. En este campo ha sido crucial la investigación translacional, llegando a la clínica humana desde el campo experimental (AU)

The evolution of Pediatric Surgery has run in parallel with Pediatrics. The advancements in radiological diagnosis, intesive care, anesthesia, and in the field of infections among others has allow to pediatric surgeons the perfomance of more aggressive and complex surgical interventions. The knowledge about the biological behavior and genetics of the pediatric tumors as well as the introduction of new multimodal treatments has improved enormously the prognosis of oncologist children. The development of minimally invasive surgery by manufacturing surgical instruments adapted to children size has expanded its indictions including neonates. Currently, these techniques (thoracoscopy, laparoscopy and endoscopy) are regular tools used in a daily base and have taken over to conventional surgery in a high number of the cases. Advantages are a more comfortable postoperative course, esthetical advantages and its cost-effectiveness. In the same way, robotic surgery is a new instrument that can increase the skill of surgeons, decreasing the difficulties and complications of laparoscopy. Its application in children is a new field in development that will mark the future of pediatric surgery as has ocurred with laparoscopy. Finally, fetal surgery is not anymore a fiction, it is a reality. The translational medicine form the lab to the clinical application is crucial in its development (AU)

Aplicación de un modelo politómico de TRI al test ASSIST para el estudio de sus propiedades métricas / Application of a IRT polytomous model to ASSIST test for the study of psychometric properties

La cocaína es, tras el cannabis, la sustancia de comercio ilegal más consumida en Europa y España. Su uso está fundamentalmente vinculado a los contextos recreativos de ocio y a jóvenes-adultos, quienes son reticentes a contactar con los servicios asistenciales, acudiendo a estos cuando desarrollan problemas graves. Por ello, resulta necesario disponer de herramientas de cribado que ayuden a la detección temprana de problemas relacionados con el consumo de cocaína. Objetivo. El objetivo de este trabajo es analizar las propiedades psicométricas de la versión auto-aplicada on line del test de cribado ASSIST (Alcohol, Smoking and Substance Involvement Screening Test). Método. La muestra está formada por 1176 consumidores de cocaína que cumplimentaron el ASSIST on line. Las propiedades psicométricas serán estudiadas empleando el Modelo del Crédito Parcial, dentro de la familia de la Teoría de la Respuesta al Ítem (TRI). Resultados. En términos generales, se observa un adecuado ajuste de los datos al modelo. No obstante, se aprecia un funcionamiento deficiente de las categorías de respuesta. Igualmente, se aprecia un desplazamiento de la posición de los ítems en el continuo con respecto a las personas, siendo deficientemente medidas las personas con niveles bajos de riesgo asociado al consumo. Conclusiones. El análisis del ASSIST desde la perspectiva de la TRI ha mostrado algunas deficiencias de este test cuando se aplica sobre este tipo de muestra consumidora de cocaína. A pesar de una calibración de los ítems adecuada, se proponen mejoras que permitan reducir el error de medida en las personas que presentan niveles bajos de riesgo asociado al consumo de cocaína (constructo) y modificaciones respecto a las alternativas de respuestas (AU)

Cocaine is, second after cannabis, the most used illegal drug in Europe and Spain. Its use is primarily linked to recreational nightlife settings and young adults who are reluctant to contact with health services and draw on these when they develop serious drug problems. Therefore, screening tools are needed to help early detection of problems related to cocaine use. Aim. The aim of this paper is to analyse the psychometric properties of an online self-applied version of ASSIST (Alcohol, Smoking and Substance Involvement Screening Test). Method. The sample consisted of 1176 cocaine users who completed the ASSIST online. The psychometric properties are studied using the Partial Credit Model, within the family Item Response Theory (IRT). Results. In general terms, the degree to which the test response data are as expected from the model is good. However, ASSIST test shows a poor fit of the response categories. Similarly, the relative positions of the items on the continuum imply poor measurement of people with low levels of risk associated with drug use. Conclusion. ASSIST analysis from the perspective of IRT has showed some shortcomings in this test when applied to this type of sample of cocaine users. Despite good item calibration, several improvements to reduce the measurement error in people with low levels of risk associated with cocaine use (construct) and changes in responses categories are proposed (AU)

Análisis de las diferencias en el perfil y patrón de consumo de drogas de hombres y mujeres que asisten a fiestas rave / Analysis of the differences in the profile and drug use patterns between male and female who attend raves

Objetivo. Estudios poblacionales muestran un consumo diferencial de drogas entre hombres y mujeres. Algunos trabajos han apuntado hacia las raves como una cultura andrógina donde las diferencias de género se diluyen. No obstante, las evidencias empíricas sobre el patrón diferencial según género en este contexto son escasas. Este estudio tiene como objetivo analizar las diferencias en el patrón de consumo de drogas y el perfil sociodemográfico de hombres y mujeres que asisten a fiestas rave. Material y método. Se entrevistó a 252 asistentes a fiestas rave en Andalucía (España). Se administró un cuestionario en el que se recogía información sobre el patrón de consumo de 15 drogas distintas y el perfil sociodemográfico. Resultados. Los resultados muestran un elevado consumo y policonsumo de drogas entre los participantes, no encontrándose diferencias significativas en el patrón de consumo y el perfil sociodemográfico según el género. Como media, los hombres han consumido alguna vez 9,9 drogas frente a 9,5 las mujeres. En el último mes, 7,3 frente a 6,9, y en la última rave, 5 frente a 4,9. Conclusiones. Al contrario de lo que sucede en la población general, donde la prevalencia de consumo de drogas de los hombres es superior a la de las mujeres, este trabajo no ha encontrado diferencias significativas en el patrón de consumo entre ambos géneros. Este hecho debe ser considerado para el diseño de estrategias preventivas de reducción de riesgos y daños en este colectivo (AU)

Objective. Population studies show differential drug consumption between male and female. Some studies point to rave as an androgynous culture, where gender differences disappear. Nonetheless, in this context, empirical evidences on differential patterns of drug use by gender are scarce. The purpose of this study is to analyze differences in drug use patterns and sociodemographic profile between male and female who attend raves. Material and method. Two hundred and fifty-two people who went to raves in Andalucía (Spain) were interviewed. It was administered a questionnaire to collect information on use patterns of 15 different drugs and sociodemographic profile. Results. Results show a high substance and polysubstance use between ravers. No significant differences by gender were found in drug use patterns or sociodemographic profile. The average number of drug consumed for male "some time in their lives" were 9.9, versus 9.5 for female. In the last month, 7.3 versus 6.9, and last rave, 5 versus 4.9. Conclusions. Opposite to what it happens in general population, where drug use prevalence of male is higher than female, this study haven´t found significant differences by gender. This fact must be considered in order to design risk and harm reduction preventive strategies (AU)

[Robotic surgery: first pediatric series in Spain]. / Cirugía robótica: primera serie pediátrica en España.

OBJECTIVES: Despite several surgical robots operating in Spain, the experience in pediatric pathology is limited. We found interesting to review the first full pediatric series in our country. We would like to share as well our views on the transition from conventional to robotic laparoscopy. METHODS: Retrospective review of all the pediatric laparoscopic surgery assisted by the da Vinci robot (Intuitive Surgical), in our center, between April 2009 and February 2010. RESULTS: 8 patients were operated (7-15 years), with an average weight of 42 Kg (18 to 83 Kg). 11 procedures were performed: bilateral salpingo-oophorectomy (1), inguinal hernia (1), cholecystectomy (4), splenectomy (2), resection of pancreatic mass (1), fundoplication (1), adrenalectomy (1). All proceedings, except two, were completed with the robot. As complications, there was one intraoperative bleeding that required blood transfusion, and in the postoperative period, there was a surgical wound infection. There were no conversions to open surgery. The average time of preparation before surgery was 130 minutes. The three-dimensional vision and lack of tremor are the main advantages cited by all surgeons. CONCLUSIONS: The learning curve of Robotic Surgery is shorter than that of conventional laparoscopy. Trained surgeons can perform complex procedures laparoscopically from the outset. The main difficulty in children is the proper planning of trocar placement, due to the smaller size of the surgical field. The organization of surgery is complex and success depends on close collaboration of all stakeholders.

Cirugía robótica: primera serie pediátrica en España / Robotic surgery: First pediatric series in Spain

Objetivos. A pesar de que funcionan varios robots quirúrgicos en España, la experiencia en patología pediátrica es escasa, por lo que creemos interesante revisar la primera serie íntegramente pediátrica del país. Queremos también transmitir nuestras impresiones sobre el paso de la laparoscopia convencional a la robótica. Métodos. Revisión retrospectiva de los casos pediátricos intervenidos mediante laparoscopia asistida por el robot da Vinci (Intuitive Surgical) entre abril de 2009 y febrero de 2010.Resultados. Se intervinieron 8 pacientes (7 a 15 años), con un pesomedio de 42 kg (18 a 83 kg). Se realizaron 11 procedimientos: salpingo-ooforectomía bilateral (1), herniorrafia inguinal (1), colecistectomía(4), esplenectomía (2), exéresis de masa pancreática (1), fundoplicatura(1), suprarrenalectomía (1). Todos los procedimientos, salvo 2, se (..) (AU)

Objectives. Despite several surgical robots operating in Spain, the experience in pediatric pathology is limited. We found interesting to review the first full pediatric series in our country. We would like to share as well our views on the transition from conventional to roboticlaparoscopy. Methods. Retrospective review of all the pediatric laparoscopicsurgery assisted by the da Vinci robot (Intuitive Surgical), in our center, etween April 2009 and February 2010.Results. 8 patients were operated (7-15 years), with an average weight of 42Kg (18 to 83Kg). 11 procedures were performed: bilateralsalpingo-oophorectomy (1), inguinal hernia (1), cholecystectomy (4),splenectomy (2), resection of pancreatic mass (1), fundoplication (1),adrenalectomy (1). All proceedings, except two, were completed with (..) (AU)

Family quality of life: adaptation to Spanish population of several family support questionnaires.

BACKGROUND: The concept of family quality of life has emerged as a decisive construct in the last decades to improve the capabilities of families and to assess the outcomes of the services and supports they get. The goal of this research is to adapt three instruments to the Spanish population: the 'Beach Center Family Quality of Life Scale', the 'Beach Center Family-Professional Partnership Scale' and the 'Service Inventory'. These tools were originally designed by researchers from the Beach Center on Disability, University of Kansas, in order to obtain some input from the families of people with intellectual disability (ID) with regard to the attention they get from the early childhood intervention services. METHOD: The sample included a total of 202 families of children with ID, between 0 and 6 years old, all of them cared for at 13 early childhood intervention centres. Based on a confirmatory factorial analysis, we have explored the psychometric properties of the three scales administered to respondents. Statistical analyses were conducted with the spss software version 17.0 and the EQS software version 6.1 for Structural Equation Models. RESULTS: The results confirm that the factor structure of the 'Beach Center Family Quality of Life Scale', the 'Beach Center Family-Professional Partnership Scale' and the 'Service Inventory' adapted for the Spanish population fit the factor models proposed by the authors of the surveys. Consequently, the scales are ready to be used. CONCLUSIONS: The developed measures may serve as a foundation for good decision-making from practices and policies.

[Long term follow-up of bile duct stenosis treated with interventional radiology in pediatric liver transplantation]. / Seguimiento a largo plazo de las estenosis de la vía biliar tratadas con radiología intervencionista en el trasplante hepático pediátrico.

The reported incidence of biliary strictures following pediatric liver transplantation has ranged between 5-34%, with a higher incidence in segmental grafts. Currently, percutaneous transhepatic balloon dilatation of biliary strictures is considered as the first line treatment owing to its minimal invasiveness. Between 1995-2006, 20 children who underwent liver transplantation developed biliary complications treated with interventional radiology. 16/20 developed biliary stricture, of whom 10 were treated with percutaneous transhepatic balloon dilatation. The mean age at the procedure was 6.6 years (range 8 m--14 years). The allograft types included whole (n=4), split (n=3), and reduced (n=3) livers. The procedure was performed at a mean time post-transplantation of 2.6 years. All patients are alive with a mean follow-up post-procedure of 24 months (range: 4 months-11 years). Currently, only 4 have a normal appearing biliary tree by imaging techniques and 6 developed stricture recurrence; of whom 3 developed biliary cirrhosis (2 splits, 1 reduced), one patient underwent successful rescue surgery, one was treated again percutaneously, and the remaining was lost to followup. In conclusion, treatment of percutaneous transhepatic balloon dilatation of biliary strictures is effective avoiding surgical correction. However, stricture recurrence in the medium- long term follow-up is frequent, particularly in segmental grafts. [corrected]

Seguimiento a largo plazo de las estenosis de la vía biliar tratadas con radiología intervencionista en el trasplante hepático pediátrico / No disponible

La incidencia de estenosis de la vía biliar en el trasplante hepático infantil varía entre un 5-34%, y es más acusada en los injertos segmentarios que en los completos. El tratamiento de estas complicaciones mediante radiología intervencionista evita en algunos casos la cirugía. Entre 1995-2006 se han tratado 20 niños con trasplante hepático y complicaciones de la vía biliar con radiología intervencionista. Dieciséis de ellos presentaron estenosis de la vía biliar, de los cuales en 10se corrigió con dilatación percutánea transparietohepática. La edad media de los niños fue de 6,6 años (rango 8 meses-14 años). Los tipos de injerto incluyen 4 completos y 6 parciales (3 splits, 3 reducidos). Las dilataciones se realizaron a una media de 2,6 años postrasplante. Todos los pacientes están vivos, con un seguimiento medio desde la dilatación de 24 meses (rango 4 meses-11 años). Actualmente, solo4 (40%) presentan una vía biliar de características normales por pruebas de imagen y en 6 (60%) ocurrió una recidiva de la estenosis. De estos 6, 3 han desarrollado cirrosis biliar (2 splits, 1 segmentario), un paciente ha requerido corrección quirúrgica, otro se ha vuelto ha dilatar y el paciente restante se le ha perdido el seguimiento. Las dilataciones percutáneas transparietohepáticas en el tratamiento de las estenosis de la vía biliar, inicialmente son efectivas y evitan la corrección quirúrgica. Sin embargo, las reestenosis a medio-largo plazo son frecuentes, en especial en los injertos parciales (AU)

Incidence of bile duct strictures in the paediatric liver transplant ranges from 5-34%, and is most pronounced in segmental grafts that complete. The treatment of these complications avoided in most cases surgery. Between 1995-2006 have been treated 20 children with liver transplantation and bile duct complication with interventional radiology. Sixteen of them were suffering from bile duct strictures of which 10 were corrected with percutaneous dilation. The average age of children was6.6 years (range 8 months-14 years). The types of graft include 4 complete and 4 partial (3 splits, reduced 3). The dilatation was made at an average of 2.6 years after transplant. All patients are alive, with a mean follow-up from the dilation of24 months (range 4 months-11 years). Currently, only 4 (40%) have a normal bile duct by imaging techniques and 6 (60%) have had a recurrence of biliary strictures. Of these, 3 have developed biliary cirrhosis(2 splits, segmental 1), two patient have required surgical correction, another has been delayed again and the remaining patient has been lost monitoring. The percutaneous dilation in the treatment of strictures of the bileduct is initially effective avoiding surgical correction. However there strictures medium-long term are frequent (AU)

[Rehbein's procedure versus De la Torre in Hirschsprung's disease]. / Rehbein versus De la Torre en la enfermedad de Hirschsprung.

The authors perform a retrospective study with a 4 years follow up of 46 patients operated of Hirschsprung's disease (HD). In 36 cases by with staplers Rehbein technique (TR) and in 10 others with De la Torre endorectal pull-through (TEPT). In all them diagnosis was achieved by mean of radiology, manometry, and hystochemical procedures. During the surgical procedure was performed in all cases biopsies to confirm the neuronal integrity of the colon descended. In the TR group, 16.6% of patients presented rectal achalasia with constipation due to 3 cms. aganglionic rectum remnant, while in the TEPT group this circumstance are not presented because all aganglionic rectum was eliminated. Otherwise TEPT technique permits an earlier application, diminuend the hospitalization time,shortening the start of feeding and with a good cosmetic result. None of this patients presented infection, stenosis, bleeding or incontinence.