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.

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.

[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.

[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.