Perception of Social and Educational Quality of Life of Minors Diagnosed with Rare Diseases: A Systematic Review and Meta-Analysis.

This study explores the perception of social and educational quality of life in minors with rare diseases (RDs). Two meta-analyses were performed, applying the random effects model. Results: Regarding the social Quality of Life, the meta-sample consisted of k = 40 samples, with a total population of 1943 children (mean age = 9.42 years), of whom 687 (35.3%) were girls, 615 (31.4%) were boys and 641 (33%) did not report their sex. The effect size was large (mean size = 7.68; p < 0.000; 99% Confidence Interval; lower limit = 7.22; upper limit = 8.14). The results of the meta-regression and model analysis showed the importance of the measurement instrument (Paediatric Quality-of-Life Inventory and Prototypes of the Quality of life) and the dissimilarity of perception among caregivers. The nationality and the type of RD were not relevant. With respect to the educational Quality of Life, the meta-sample consisted of k = 19 samples, with 699 minors (mean age = 10.3 years), of whom 266 (38%) were girls, 242 (34.6%) were boys and 191 (27.4%) did not report their sex. The effect size was large (mean size = 7.15; p < 0.000; 99% CI; lower limit = 6.35; upper limit = 7.94). The meta-regression and comparison of models showed that the type of RD was essential. The measurement instrument was a moderating variable, especially the Parent version Paediatric Quality-of-Life Inventory. This study reveals the need for further research on RDs and their social−educational effects.

Psychological Distress, Family Support and Employment Status in First-Year University Students in Spain.

Mental disorders are consistently and closely related to psychological distress. At the start of the university period, the relationship between a student's psychological distress, family support, and employment status is not well-known. The aims of this study were: To determine the prevalence of psychological distress in first-year university students and to analyze its relationship with family support and the student's employment status. Data from 4166 first-year university students from nine universities across Spain were considered. The prevalence of psychological distress was obtained using the GHQ-12, a valid and reliable screening tool to detect poor mental health. To analyze the relationship between psychological distress, family support, and employment status, logistic regression models were fitted. Regarding the prevalence found, 46.9% of men and 54.2% of women had psychological distress. In both genders, psychological distress levels increased as family support decreased. Among women, psychological distress was associated with their employment status. The prevalence of psychological distress among first-year university students in Spain is high. In addition, family support, and employment status for women, could be factors to take into account when developing psychological distress prevention strategies at the beginning of the university period.

A single Spanish version of maternal and paternal postnatal attachment scales: validation and conceptual analysis.

BACKGROUND: Postnatal bonding constitutes a major process during the postpartum period, and there is evidence that bonding difficulties have negative consequences for parents' mental health and the child's development. However, the conceptualization of postnatal bonding presents inconsistencies, as well as problems in having instruments that encompasses the father figure. The objective was to adapt the maternal postnatal attachment scale (MPAS) and the paternal postnatal attachment scale (PPAS) to Spanish, to evaluate its validity and reliability and to analyze the construct dimensionality of both questionnaires from a gender perspective. METHODS: Instrumental design. In 2016-2017, a sample of 571 mothers and 376 fathers, with children between 6 and 11 months of age, responded to the Spanish version of MPAS and PPAS, respectively. After a process of translation-back-translation of the instrument, we empirically analyzed the internal consistency (Cronbach alpha, composite reliability (CR)) construct and concurrent validity (with regard to postpartum depression and dyadic adjustment). Additionally, we studied the instrument's content validity, using the Delphi methodology; and the differential analysis in both samples (mothers and fathers), examining the invariance. RESULTS: A short version of 15 items was obtained, common for mothers and fathers. The results of the Delphi methodology showed a 100% inter-judge agreement, highlighting the absence of differences in the adequacy of the items as a function of the parents' gender. Confirmatory factor analysis showed a good fit of three original factors proposed by the authors. The global Cronbach alpha coefficients in the total sample were adequate (mothers, 0.70; fathers, 0.78); and Cronbach alpha of each dimension in the case of mothers was 0.50 (Quality of bonding), 0.55 (Absence of hostility), and 0.60 (Pleasure in interaction); in the case of fathers, it was respectively 0.54, 0.64, and 0.72. CR of each dimension were: quality of bonding, 0.74 in mothers and 0.80 in fathers; absence of hostility, 0.93 in mothers and 0.94 in fathers; pleasure in interaction, 0.83 in mothers and 0.90 in fathers. With regard to the analysis of group invariance, the results revealed empirical evidence of configural and metric invariance. Concurrent validity showed moderate negative correlations for postnatal depression (mothers, r = -0.41, p < 0.001; fathers, r = -0.38, p < 0.001), and positive correlations for dyadic adjustment (mothers, r = 0.39, p < 0.001; fathers, r = 0.44, p < 0.001). DISCUSSION: A new version of the instrument was generated, with good psychometric properties, adequate for use both with mothers and with fathers. This scale helps evaluate postnatal maternal and paternal bonding, allowing to study it from within the family system, a necessary step forward to advance perinatal mental health.

Estandarización ortográfica. Respuesta / Ortographic standarization. Answer

No disponible

Analgesia with continuous wound infusion of local anesthetic versus saline: Double-blind randomized, controlled trial in hepatectomy.

BACKGROUND: Surgical wound is source of pain in hepatectomy with laparotomy. Continuous wound infusion of ropivacaine may provide effective analgesia. METHODS: This prospective, randomized trial, patients scheduled for hepatectomy received a 48-h preperitoneal continuous wound infusion of either 0.23% ropivacaine or 0.9% saline at 5 ml/h. Primary endpoint was 48 h morphine consumption. RESULTS: 53 patients included in the ropivacaine group and 46 in the saline group. Morphine consumption was 24.63 mg in the ropivacaine group, and 26.78 mg (p = 0.669) in the saline group. Pain was comparable between groups and there were no differences in solid food intake, ambulation, or length of hospital stay. No local or systemic complications were recorded. CONCLUSIONS: Continuous wound infusion with ropivacaine is safe, but it neither reduced morphine consumption nor enhanced recovery in patients undergoing hepatectomy. Success of enhanced recovery in hepatectomy is not influenced by the analgesic regimen if pain is well controlled.

Ensayos clínicos y consentimiento informado: visión de investigadores, pacientes y médicos de familia / Informed consent process in clinical trials: Insights of researchers, patients and general practitioners

OBJETIVO: En investigación es fundamental informar adecuadamente a los pacientes y respetar el principio de autonomía. El objetivo de este estudio fue explorar la percepción de médicos de familia, investigadores y pacientes sobre el proceso del consentimiento informado (CI) en los ensayos clínicos (EC), y el papel que desempeña el médico de familia. DISEÑO: Estudio transversal mediante 3 cuestionarios y revisión de CI, historias clínicas e informes de alta hospitalaria. Emplazamiento: Médicos de familia, investigadores y pacientes involucrados en EC. PARTICIPANTES: Quinientos cuatro médicos de familia, 108 investigadores y 71 pacientes. RESULTADOS: En el 50% de los CI se recomendaba consultar con el médico de familia. Constaba la participación en un EC en el 33% de las historias clínicas de atención primaria y en el 3% de informes de alta hospitalaria. Los médicos de familia suspendieron, con 3,54 puntos, la información recibida a través del investigador principal. La legibilidad del CI fue puntuada con 8,03 puntos por los investigadores y con 7,68 por los pacientes (rango: 1-10 puntos). La satisfacción de los pacientes se relacionó positivamente con el tiempo de reflexión concedido. CONCLUSIONES: Los médicos de familia mostraron insatisfacción con la información que reciben sobre la participación de los pacientes de su cupo en EC. Los investigadores son conscientes de la necesidad de mejorar la información que reciben los médicos de familia, aunque están satisfechos con la información ofrecida a los pacientes. Los pacientes se mostraron colaboradores y satisfechos con la investigación biomédica y minimizaron los inconvenientes relacionados con la participación

OBJECTIVE: Adequate information for patients and respect for their autonomy are mandatory in research. This article examined insights of researchers, patients and general practitioners (GPs) on the informed consent process in clinical trials, and the role of the GP. DESIGN: A cross-sectional study using three questionnaires, informed consent reviews, medical records, and hospital discharge reports. SETTING: GPs, researchers and patients involved in clinical trials. PARTICIPANTS: Included, 504 GPs, 108 researchers, and 71 patients. RESULTS: Consulting the GP was recommended in 50% of the informed consents. Participation in clinical trials was shown in 33% of the medical records and 3% of the hospital discharge reports. GPs scored 3.54 points (on a 1-10 scale) on the assessment of the information received by the principal investigator. The readability of the informed consent sheet was rated 8.03 points by researchers, and the understanding was rated 7.68 points by patients. Patient satisfaction was positively associated with more time for reflection. CONCLUSIONS: GPs were not satisfied with the information received on the participation of patients under their in clinical trials. Researchers were satisfied with the information they offered to patients, and were aware of the need to improve the information GPs received. Patients collaborated greatly towards biomedical research, expressed satisfaction with the overall process, and minimised the difficulties associated with participation

[Not Available]. / Food consumption and risk of malnutrition in community-dwelling very old Spanish adults (≥ 80 years).

INTRODUCTION: There are few studies assessing overall diet and food patterns of the oldest population. OBJECTIVES: To examine food groups consumption (grams and servings) and their compliance with the dietary guidelines in community-dwelling very old Spanish adults. The relationship with the risk of malnutrition was also studied. METHODS: Within the cross-sectional health study of elderly people of Villanueva de la Cañada (Madrid, Spain), in 98 non-institutionalized elders aged ≥ 80 years (66% women) food consumption was calculated from a 24-hour dietary recall and nutritional risk was assessed by Mini Nutritional Assessment (MNA). Statistical significance was evaluated at 95% confidence level (p < 0.05). RESULTS: Men consumed significantly higher amounts of snacks/pickles and alcoholic beverages. The consumption of cereals/grain products (2 servings/day), vegetables (1.5 servings/day) and meat, fish, eggs (1.4 servings/day), was below desirable levels. As nutritional status got worse, fruit consumption was significantly smaller (p = 0.039). Relatively weak but highly significant correlations were found between MNA and oils/fats, fruits and alcoholic beverages. After adjustment for energy intake, oils and fats and fruits associations disappeared whereas a negative association between milk/dairy products and MNA was found. CONCLUSIONS: Dietary patterns of the elderly population of Villanueva are departing from the traditional Mediterranean diet and though adequate consumption of fruits, milk/dairy products, oils/fats and sugar/confectionery has been achieved, cereals/grain products, vegetables and the meat, fish, eggs group consumption was below the desirable levels. Deterioration of the nutritional status coincided with a reduction in the consumption of all food groups except for ready meals and milk/dairy products whose consumption increased. Further research on the influence of fruit, milk/dairy products, wine and olive oil consumption on nutritional status is required.

Food consumption and risk of malnutrition in community-dwelling very old Spanish adults (≥ 80 years) / Consumo de alimentos y riesgo de malnutrición en personas muy mayores (≥ 80 años) de vida independiente

Introduction: There are few studies assessing overall diet and food patterns of the oldest population. Objectives: To examine food groups consumption (grams and servings) and their compliance with the dietary guidelines in community-dwelling very old Spanish adults. The relationship with the risk of malnutrition was also studied. Methods: Within the cross-sectional health study of elderly people of Villanueva de la Cañada (Madrid, Spain), in 98 non-institutionalized elders aged ≥ 80 years (66% women) food consumption was calculated from a 24-hour dietary recall and nutritional risk was assessed by Mini Nutritional Assessment (MNA). Statistical significance was evaluated at 95% confidence level (p < 0.05). Results: Men consumed significantly higher amounts of snacks/pickles and alcoholic beverages. The consumption of cereals/grain products (2 servings/day), vegetables (1.5 servings/day) and meat, fish, eggs (1.4 servings/day), was below desirable levels. As nutritional status got worse, fruit consumption was significantly smaller (p = 0.039). Relatively weak but highly significant correlations were found between MNA and oils/fats, fruits and alcoholic beverages. After adjustment for energy intake, oils and fats and fruits associations disappeared whereas a negative association between milk/dairy products and MNA was found. Conclusions: Dietary patterns of the elderly population of Villanueva are departing from the traditional Mediterranean diet and though adequate consumption of fruits, milk/dairy products, oils/fats and sugar/confectionery has been achieved, cereals/grain products, vegetables and the meat, fish, eggs group consumption was below the desirable levels. Deterioration of the nutritional status coincided with a reduction in the consumption of all food groups except for ready meals and milk/dairy products whose consumption increased. Further research on the influence of fruit, milk/dairy products, wine and olive oil consumption on nutritional status is required (AU)

Introducción: existen pocos estudios que valoren el consumo de alimentos de la población muy mayor. Objetivos: evaluar el consumo de los grupos de alimentos (gramos y raciones) y su adecuación a las recomendaciones para la población anciana española. Además se estudia su relación con el riesgo nutricional. Métodos: dentro del estudio transversal sociosanitario en mayores de Villanueva de la Cañada (Madrid), en 98 individuos ≥ 80 años (66% mujeres) se evaluó el consumo de alimentos a partir de un recuerdo-24 horas y el riesgo nutricional fue valorado mediante Mini Nutritional Assessment (MNA). La significación estadística se evaluó a nivel de confianza del 95% (p < 0,05). Resultados: los hombres consumieron significativamente mayor cantidad de aperitivos y bebidas alcohólicas. El consumo de cereales y derivados (2 raciones/día), verduras y hortalizas (1,5 raciones/día) y alimentos del grupo carnes, pescados y huevos (1,4 raciones/día) no alcanzó las recomendaciones. Al empeorar el estado nutricional el consumo de frutas fue significativamente menor (p = 0,039). Se han encontrado correlaciones relativamente débiles, pero altamente significativas entre el MNA y el consumo de aceites/grasas, frutas y bebidas alcohólicas. Tras ajustar la ingesta de energía, la asociación con los aceites/grasas y con las frutas desaparece mientras que surge una asociación negativa con el consumo de lácteos. Conclusiones: el patrón alimentario observado se desvía del mediterráneo tradicional. Así, aunque existe un consumo adecuado de lácteos, frutas, aceites/grasas y azúcares/dulces, el consumo de cereales y derivados, verduras y hortalizas y alimentos del grupo carnes, pescados y huevos no alcanzó las recomendaciones. El deterioro del estado nutricional coincide con una disminución en el consumo de todos los grupos de alimentos menos en el caso de los precocinados y los lácteos cuyo consumo aumenta. La infuencia del consumo de fruta, lácteos, vino y aceite de oliva sobre el estado nutricional requiere más investigación (AU)

[Informed consent process in clinical trials: Insights of researchers, patients and general practitioners]. / Ensayos clínicos y consentimiento informado: visión de investigadores, pacientes y médicos de familia.

OBJECTIVE: Adequate information for patients and respect for their autonomy are mandatory in research. This article examined insights of researchers, patients and general practitioners (GPs) on the informed consent process in clinical trials, and the role of the GP. DESIGN: A cross-sectional study using three questionnaires, informed consent reviews, medical records, and hospital discharge reports. SETTING: GPs, researchers and patients involved in clinical trials. PARTICIPANTS: Included, 504 GPs, 108 researchers, and 71 patients. RESULTS: Consulting the GP was recommended in 50% of the informed consents. Participation in clinical trials was shown in 33% of the medical records and 3% of the hospital discharge reports. GPs scored 3.54 points (on a 1-10 scale) on the assessment of the information received by the principal investigator. The readability of the informed consent sheet was rated 8.03 points by researchers, and the understanding was rated 7.68 points by patients. Patient satisfaction was positively associated with more time for reflection. CONCLUSIONS: GPs were not satisfied with the information received on the participation of patients under their in clinical trials. Researchers were satisfied with the information they offered to patients, and were aware of the need to improve the information GPs received. Patients collaborated greatly towards biomedical research, expressed satisfaction with the overall process, and minimised the difficulties associated with participation.

Endoscopic necrosectomy of walled-off pancreatic necrosis using a lumen-apposing metal stent and irrigation technique.

BACKGROUND: Endoscopic management of walled-off pancreatic necrosis (WOPN) is an area of great interest with many still unanswered questions, including the role of mechanical necrosectomy versus irrigation. The aim of this study was to evaluate a new method of endoscopic transmural necrosectomy. METHODS: Patients with WOPN after necrotizing pancreatitis, who underwent endoscopic transmural necrosectomy using a lumen-apposing metal stent with vigorous irrigation sessions, were prospectively recruited between September 2011 and August 2014. Initial endoscopic session was performed by EUS-guided drainage and lavage sessions by flushing saline through the stent. Technical and clinical success rates, number of repeat interventions, and adverse events were analyzed. RESULTS: Twelve patients with 13 WOPN collections (median size 12.4 ± 2.94 cm) underwent endoscopic treatment. Clinical success was achieved in 100 % of cases after a median of three sessions per patient (range 2-8). The median length of hospitalization was 15.9 days. Median procedure time of the access session was 31 ± 10.16 min. No adverse events (AE) were described during the procedures or 24 h after. There were four AE (two infections and two bleedings) between sessions, but only two were severe (16.6 %). There was no need for surgery, and no mortalities occurred. Mean time to stent retrieval was 9 ± 3.4 weeks. Mean follow-up was 13 months with only one recurrence at 12 months after stent removal. CONCLUSIONS: This new variant of irrigation endoscopic transmural necrosectomy without mechanical debridement helps to simplify the technique, is feasible, and has excellent outcomes in WOPN treatment.

Puesta en marcha del informe de alta emitido por matronas en el puerperio de bajo riesgo / Implementation of the discharge delivered by midwives in low-risk postpartum

En el Hospital Universitario de Fuenlabrada, un 70-75% de los partos son eutócicos con puerperio fisiológico. Al ser éste el diagnóstico más frecuente, el equipo se planteó que las matronas emitiesen el informede alta. El marco legal afirma que la matrona podría emitir el informe de alta, sin la firma y el número de colegiado médico, en un régimen de delegación de actuaciones previamente establecidas y con la aprobación de un protocolo. Con estas condiciones se inició la puesta en marcha del proyecto «Alta clínica a cargo de la matrona en el servicio de hospitalización obstétrica». Este proyecto consta de cinco fases: planificación, rotación interna, elaboración de documentos, formación e implementación. En España no hay antecedentes sobre este tema, por lo que se abre una nueva línea de actuación e investigación (AU)

At the University Hospital of Fuenlabrada, the births are vaginal deliveries, of which approximately 70-75% are normal deliveries. Following consultation under the current legal framework, the midwife can issue and prepare a postnatal discharge form in physiological puerperium, without the signature and number of medical college, provided under a "delegation of performances", and following the previously established adoption of a protocol of clinical practice. With this legal cover, the obstetric and gynecologist department starts the implementation of the protocol "Clinical discharge by the midwife at the postnatal ward". The development and implementation of this protocol has been implemented in five stages: planning, internal rotation, development of documents ,training and implementation. Currently in our area, there is no background on the proposed topic, so this work opens a new line of action, debate and inquiry (AU)

Intoxicación por misoprostol en el tercer trimestre de gestación / Misoprostol poisoning in the third trimester of pregnancy

Introducción. El misoprostol es una análogo de las prostaglandinas E1, actualmente autorizado en nuestro ámbito para el tratamiento de la ulcera de estómago y la prevención de lesiones gastrointestinales inducida por AINE. Pacientes y métodos. Mujer grávida 5 (3 partos eutócicos y 1 embarazo ectópico), con 32 semanas de gestación, acude a urgencias con desorientación, confusión, dolor abdominal intenso, T.a 41°C, 83/46 mmHg, 100 lpm. Se objetiva, taquicardia fetal con FCF basal 170 lpm con buena variabilidad y dinámica uterina irregular. La gestante refiere la autoadministración intravaginal de 4.000 μg misoprostol. Se inicia tratamiento sintomático con rehidratación, antitérmicos, antibióticos y maduración fetal. Tras 5 días de ingreso se produce parto eutócico con recién nacido vivo pretérmino. Conclusión. La sobredosis y la toxicidad del misoprostol en gestantes durante el tercer trimestre cursa con hipertermia, alteraciones de la consciencia, hipotensión, hipertonía uterina y/o polisistolia, llegando incluso a la muerte fetal. No existe antídoto, por lo tanto, el tratamiento es sintomático (AU)

Background. Misoprostol is a prostaglandin analogue, authorised use for the treatment of stomach or duedenal ulcers. In Spain, this drug is no authorised use for obstetrics and gynecology. Pacientes y métodos. Gravida 5, para 3, 1 ectopic, at 32 weeks's gestation. Presents disorientation, confusion, intense abdominal pain, hyperthermia 41 °C, 83/46 mmHg and 100 bpm. Fetal monitoring reveals foetal tachycardia of 170 bpm with good variability and irregular contractions. The woman admitted self-medication intravaginal 4.000 μg misoprostol. The treatment was: rehydration, antipyretic medication, fetal monitoring and treatment of suspected chorioamnionitis and prematurity. Five days after, normal delivery. Conclusion. Overdose and toxicity of misoprostol in pregnant women during the third trimester presents with hyperthermia, altered consciousness, hypotension, uterine hypertonia and or polisistolia, even fetal death. There is no antidote, so the treatment is symptomatic (AU)

Comités éticos: perfil de los miembros no sanitarios de los comités éticos de investigación clínica y comités de ética asistencial de Cataluña / Profile of lay members of ethics committees in Catalonia (Spain)

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Derecho de los inmigrantes a la asistencia sanitaria / The right of immigrants to healthcare

Se lleva a cabo una revisión de las leyes que regulan la inmigración en nuestro país, desde la primera norma jurídica referida a este ámbito que entró en vigor en 1994, la llamada “Ley de Extranjería”, de la cual cabe señalar que era muy escueta en su contenido, hasta la “Ley Orgánica sobre Derechos y Libertades de los extranjeros en España y su integración social”, publicada en enero de 2000, así como del Código Deontológico de la Enfermería de España. • Con el presente trabajo se intenta dar respuesta a qué tipo de asistencia sanitaria tienen derecho los inmigrantes, si tienen los mismo derechos a las prestaciones sanitarias los inmigrantes con una situación administrativa regularizada o no regularizada y qué contempla el Código Deontológico enfermero respecto a la atención de los pacientes inmigrantes

The paper presents a review of the laws governing immigration in our country from the the time the first regulation in relation to this subject entered into effect in 1994 -the so called “Immigration Law for Aliens”- which was rather simple in its contents, to the “Organic Law on Rights and Freedom of the Immigrants in Spain and their social integration”, published in January 2000, as well as the Deontological Code of Nursing in Spain. • The aim of this paper is to attempt to ascertain the type of healthcare type that these immigrants have the right to receive, whether their rights should be the same as those immigrants who are legally living in Spain, and what the Deontological Nursing Code with regards to immigrant patients establishes in relation to immigrant patients

Cambio social en relación a la higiene personal. Principales representaciones simbólicas en torno al agua durante el renacimiento / Social change concerning the personal hygiene. Main symbolic representations of the water during the renaissance

El antropocentrismo propio de la Edad Moderna fue produciendo un singular cambio en torno a la necesidad de higiene. Sin embargo, durante esa misma época, los discursos médicos tuvieron una influencia negativa sobre la creación de mitos sociales en relación con el agua y los baños. La sociedad estigmatizó al usuario de los baños públicos, al éstos considerados fuente de pecado y de infecciones. Las prácticas higiénicas de la época se redujeron al aseo de las partes visibles, ignorando el resto del cuerpo, y al uso de polvos, perfumes y ropa interior. Como consecuencia de todo ello, desaparecieron los baños públicos (AU)

La estigmatización del enfermo. El caso del paciente leproso en la edad media / Stigmatization of the ill: the case of the leper in the Middle Age

Durante la Edad Media, la sociedad estigmatizó al leproso y su internamiento en las leproserías representó el punto más crítico de exclusión social. Al estigma de la pública condena se unieron privaciones de todo orden. Al estudiar la situación del leproso en la Edad Media, se constatan los tres niveles de la teoría "labelling": definición de conducta desviada, atribución de estatus de desviado e impacto de éste en la identidad del individuo. Al igual que la lepra lo fue en la Edad Media, la enfermedad puede ser causa de exclusión social en cualquier época de la Historia (AU)