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Purpose: This study aimed to provide a summary of the measures to assess narcoleptic symptoms or complications in pediatric narcolepsy patients. Methods: We searched in the National Center for Biotechnology Information (NCBI) for measures of narcoleptic symptoms for pediatric patients. Further review was conducted if relevant questionnaires or information were mentioned. Results: There were only two narcolepsy-specific questionnaires, the narcolepsy severity scale and Ullanlinna Narcolepsy Scale, neither of them was developed or validated in the pediatric population. For cataplexy, all the measures were study-specific diaries and were not validated questionnaires. For excessive daytime sleepiness, the Epworth Sleepiness Scale was most frequently used to measure excessive daytime sleepiness in children. For nighttime sleep, the Children's Sleep Habits Questionnaire was most frequently used. For depression, the Children Depression Inventory was the most frequently used. For attention-deficit/hyperactivity disorder, the Child Behavior Checklist was the most frequently used. For quality of life, KIDSCREEN was most frequently used. Conclusions: At present, there is a lack of disease-specific and validated questionnaires for pediatric narcoleptic patients. This need can be met by modifying and adjusting the existing adult questionnaires and developing new questionnaires for pediatric narcoleptic patients. [ABSTRACT FROM AUTHOR]

Background: Wild vegetables in the Mediterranean Basin are still often consumed as a part of the diet and, in particular, there is a great tradition regarding their use in Sicily. In this study, an ethnobotanical field investigation was carried out to (a) identify the wild native taxa traditionally gathered and consumed as vegetables in Sicily, comparing the collected ethnobotanical data with those of other countries that have nominated the Mediterranean diet for inclusion in the UNESCO Representative List of the Intangible Cultural Heritage of Humanity and (b) highlight new culinary uses of these plants. Methods: Interviews were carried out in 187 towns and villages in Sicily between 2005 and 2015. A total of 980 people over the age of 50 were interviewed (mainly farmers, shepherds, and experts on local traditions). Plants recorded were usually collected in collaboration with the informants to confirm the correct identification of the plants. The frequencies of citation were calculated. Results: Two hundred fifty-three taxa (specific and intraspecific) belonging to 39 families, and 128 genera were recorded (26 were cited for the first time). The most represented families were Asteraceae, Brassicaceae, Apiaceae, Amaryllidaceae, Malvaceae, and Polygonaceae. Only 14 taxa were cited by 75% of the people interviewed. The aerial parts of wild plants, including leaves, tender shoots, and basal rosettes, are the main portions collected, while the subterranean parts are used to a lesser extent. For some vegetables, more parts are utilized. Most of the reported vegetables are consumed cooked. In addition to the widely known vegetables (Borago officinalis, Beta spp., Cichorium spp., Brassica spp., Carduus spp., etc.), the so-called ancient vegetables are included (Onopordum illyricum, Centaurea calcitrapa, Nasturtium officinale, Scolymus spp., Smyrnium rotundifolium), and some unique uses were described. Comparing the Sicilian findings to those from other countries, a very high number of vegetable taxa were detected, 72 of which are eaten only in Sicily, while 12 are consumed in all the Mediterranean countries examined. Conclusions: The research shows a high level of Sicilian knowledge about using wild plants as a traditional food source. Wild vegetables are healthy and authentic ingredients for local and ancient recipes, which are fundamental to the revitalization of quality food strictly connected to traditional agroecosystems. [ABSTRACT FROM AUTHOR]

Background: Narcolepsy is a lifelong sleep disorder with a prevalence of between 0.03% and 0.06% and onset at around puberty. It is associated with psychiatric comorbidities and cognitive difficulties. No valid and reliable condition-specific health-related quality-of-life (HrQoL) instrument has been developed for this population.Methods: A questionnaire based on four mixed-gender age-defined focus group discussions and a patient panel analysis was administered to young people with narcolepsy and a control group. External reliability was measured by a test-retest procedure and internal reliability was measured using Cronbach's alpha. Convergent validity with the KIDSCREEN-10 index was assessed using with intraclass correlation coefficients (ICC) and receiver operating characteristic (ROC) curves. Factor analysis techniques were used to identify suitable items and confirm the factor structure. Baseline values were assessed for convergent validity, ceiling effects, agreement and sensitivity. Comparison with KIDSCREEN-10 was made on the basis of area under the curve (AUC).Results: One hundred young people with narcolepsy and 95 control subjects returned questionnaires. The factor structure revealed two main factors with five domains and 21 questions, which was confirmed with confirmatory factor analysis. The domains of the NARQoL-21 showed good independence while the floor and ceiling effects were acceptable. The external reliability (0.928), convergent validity (rs = 0.769) and internal consistency (Cronbach's alpha = 0.886) were excellent. A Bland-Altman plot revealed some proportional bias. Good discriminant validity was detected for control/patient (Cohen's d = 2.114). ROC analysis showed significantly better AUC for NARQoL-21 (0.939) than KIDSCREEN (0.877). A cut-off score equivalent to KIDSCREEN-10 for suboptimal HrQoL which maximized sensitivity (84%) and specificity (92%) was found at NARQoL-21 score below 42.Conclusions: Establishing the validity of a disease-specific HrQoL instrument in a population of people with a rare condition poses significant challenges. The mixed-methods approach adopted here has resulted in a questionnaire of 21 items with good discrimination and convergent validity, and excellent internal and external reliability, allowing precise and stable measurements. The cut-off score can be useful to identify patients with very poor HrQoL and thus improve the design of treatment options. Further testing in a longitudinal cohort is recommended in order to establish responsiveness. [ABSTRACT FROM AUTHOR]