Health-Related Quality of Life Assessments by Children and Adolescents with Sickle Cell Disease and Their Parents in Portugal.

Health-Related Quality of Life (HRQL) can be used to measure the impact of Sickle Cell Disease (SCD) on the child and their family and is generally reduced. No research has yet measured HRQL in Portuguese pediatric SCD patients. OBJECTIVES: (1) Describe and compare HRQL of children with SCD reported by them and their parents; (2) Compare with a pediatric population with no SCD; (3) Find predictive factors of HRQL in SCD children. METHODS: Descriptive, case-control study that included sixty-eight children and adolescents with SCD (aged 3 to 18 years) and their parents. Control group-children with no SCD, matched by age, gender and ethnic background. HRQL was assessed using the multidimensional self-report PedsQL® 4.0 Generic Scales. Summary scores for overall HRQL and subscale scores for physical, emotional, social and school functioning were compared within groups (children-parents) and with the control group. Clinical and socio-demographic variables were analyzed to find predictive factors of HRQL in pediatric SCD patients. RESULTS: Children with SCD and their parents had significantly lower overall and all subdomains of HRQL, compared with the control group. Children with SCD also rated lower when compared with their parents (only significant for social functioning), with low to moderate correlations. Children and parent reports declined with increasing age. Higher pain frequency was associated with worse total and psychosocial domains of HRQL. The number of hospitalizations was a predictor of worse school score, and female gender was a predictor of worse emotional score. CONCLUSIONS: SCD significantly affects children's HRQL. Parents can provide a good proxy report, although both evaluations are beneficial. Disease status, like number of hospitalizations and frequency of pain, influences HRQL. Interventions in SCD should consider improvements in HRQL as an important outcome.

Pain in Children and Adolescents With Sickle Cell Disease: Multidimensional Assessment.

BACKGROUND: Patients with sickle cell disease (SCD) suffer from recurrent painful vaso-occlusive episodes with a significant impact on their quality of life. The aim of this study was to perform a multidimensional assessment of pain in Portuguese children and adolescents with SCD. METHODS: Subjects were children and adolescents and their parents recruited from the outpatient pediatric hematology clinic in a Portuguese Hospital. Pain frequency and a broader multidimensional evaluation was performed using the Pediatric Pain Questionnaire (PedsQL) (that includes Visual Analog Scales, color indicators, qualitative descriptors of pain [open question] and body diagram) and a structured questionnaire (PQ2), that included a term list of the Adolescent Pediatric Pain Tool, among other questions. RESULTS: Included 60 children and adolescents (36 boys and 24 girls) with a mean age of 11±4.0 years (range, 5 to 18). The majority of children (83.1%) reported no present pain and 57.6% reported pain last month, with several degrees of pain intensity. Abdomen, thorax, and limbs were the most frequent localizations. Red was the color most chosen to describe "severe pain," whereas blue and green were more used to describe "no pain." The number of pain descriptors is different using an open-ended question (2.1±1.5) than a given list of terms (15.3±8.1). The most frequent terms used in the open question were "strong/very strong," "hurts a lot," "makes cry," and "horrible." Parents used similar pain descriptors. "Makes cry," "horrible," "tiring," "unbearable," and "uncomfortable" were the most frequent terms chosen in the PQ2. Pain interfered variably with daily activities for most of the patients. CONCLUSION: Pain experienced in SCD has a broad range of intensity levels, localization, and frequency. There are a number of pain descriptors and socio-emotional factors related to the pain experience. A comprehensive multidimensional assessment that includes both child's and parents' perspective seem to be the most adequate strategy to assess pain.

Overweight in youth and sleep quality: is there a link?

ABSTRACT Objective Overweight seems to be related to a higher prevalence of sleep disturbances. Decreased sleep duration and altered sleep quality are risk factors for obesity. Our aim was to compare the sleep pattern of overweight children with that of a matched control group and assess the relationship between sleep quality and obesity. Materials and methods Retrospective cohort study comparing 41 overweight children with a normal-weight control group, both submitted to polysomnography. The samples were matched for age, sex, and apnea-hypopnea index. Body mass index (BMI) z-scores were calculated using World Health Organization (WHO) growth charts. Insulin resistance in the study group was determined using the homeostatic model assessment for insulin resistance (HOMA-IR). Sleep patterns were compared. The statistical analysis was performed using SPSS® version 21. Results The mean age (± standard deviation) of the population was 10 ± 3.4 years (min. 5 years; max. 17 years). Fifty-six percent of the participants in both groups were girls. N3% was lower in the study group (18.95 ± 6.18%) compared with the control group (21.61 ± 7.39%; t (40) = 2.156, p = 0.037). We found a correlation in the study group between HOMA-IR and N3% (Rs = -0.434, p = 0.008). Conclusion The present study suggests a link between overweight/obesity and altered sleep quality due to compromised non-rapid eye movement sleep, an indirect marker of sleep quality. There was also a link between slow-wave sleep duration and insulin resistance. We must find a strategy to provide adequate slow-wave sleep duration to reduce the obesity epidemic at young ages. Further research is needed.

Overweight in youth and sleep quality: is there a link?

OBJECTIVE: Overweight seems to be related to a higher prevalence of sleep disturbances. Decreased sleep duration and altered sleep quality are risk factors for obesity. Our aim was to compare the sleep pattern of overweight children with that of a matched control group and assess the relationship between sleep quality and obesity. MATERIALS AND METHODS: Retrospective cohort study comparing 41 overweight children with a normal-weight control group, both submitted to polysomnography. The samples were matched for age, sex, and apnea-hypopnea index. Body mass index (BMI) z-scores were calculated using World Health Organization (WHO) growth charts. Insulin resistance in the study group was determined using the homeostatic model assessment for insulin resistance (HOMA-IR). Sleep patterns were compared. The statistical analysis was performed using SPSS® version 21. RESULTS: The mean age (± standard deviation) of the population was 10 ± 3.4 years (min. 5 years; max. 17 years). Fifty-six percent of the participants in both groups were girls. N3% was lower in the study group (18.95 ± 6.18%) compared with the control group (21.61 ± 7.39%; t (40) = 2.156, p = 0.037). We found a correlation in the study group between HOMA-IR and N3% (Rs = -0.434, p = 0.008). CONCLUSION: The present study suggests a link between overweight/obesity and altered sleep quality due to compromised non-rapid eye movement sleep, an indirect marker of sleep quality. There was also a link between slow-wave sleep duration and insulin resistance. We must find a strategy to provide adequate slow-wave sleep duration to reduce the obesity epidemic at young ages. Further research is needed.

Stunned myocardium after an anesthetic procedure in a pediatric patient - case report. / Síndrome Takotsubo após procedimento anestésico em idade pediátrica - um caso clínico.

Takotsubo syndrome (TTS) is an acquired transient type of systolic dysfunction which mimics myocardial infarction clinically and electrocardiographically. TTS is also known as stress cardiomyopathy, broken heart syndrome, apical ballooning, reversible acute heart failure, neurogenic stunned myocardium or acute catecholamine cardiomyopathy. This case report describes an uncommon presentation of myocardial stunning after an anesthetic procedure. A 14-year-old girl with a history of pineal cyst and hemiplegic migraine was admitted for control brain magnetic resonance imaging. During anesthesia induction with propofol she suffered bradycardia, which was reversed with atropine, followed by tachyarrhythmia, reversed with lidocaine and precordial thump. Within hours she developed pulmonary edema and global respiratory failure due to acute left ventricular dysfunction. A transthoracic echocardiogram showed a dilated left ventricle with global hypokinesia and depressed left ventricular systolic function (ejection fraction <30%). The electrocardiogram showed persistent sinus tachycardia and nonspecific ST-T wave abnormalities. Cardiac biomarkers were elevated (troponin 2.42 ng/ml, proBNP 8248 pg/ml). She was placed on diuretics, angiotensin-converting enzyme inhibitors, digoxin and dopamine. The clinical course was satisfactory with clinical, biochemical and echocardiographic improvement within four days. Subsequent echocardiograms showed no ventricular dysfunction. The patient was discharged home on carvedilol, which was discontinued after normalization of cardiac function on cardiac magnetic resonance imaging. Few cases of TTS have been described in children, some of them triggered by acute central nervous system disorders and others not fulfilling all the classical diagnostic criteria. In this case the anesthetic procedure probably triggered the TTS.

Giant tuberculoma in an adolescent: atypical form of tuberculosis.

A tuberculoma is a rare form of presentation of tuberculosis (TB) in children. We describe the case of a 13-year-old girl, with 3 weeks of progressive tiredness and asthenia and a 48 h fever and cough. Physical examination revealed diminished pulmonary sounds in the left lower hemithorax. A chest radiograph showed an oval hypotransparency image in this location. The TB skin test was anergic and sputum was negative for acid-fast bacilli (AFB). The thoracic CT revealed a cystic mass in the left lower half hemithorax, compressing the adjacent pulmonary lobe, with double non-calcificated membrane. The exeresis of the pulmonary mass was performed and the anatomopathological study revealed a tuberculoma with AFB. TB treatment was established with a favourable clinical and radiological evolution. TB is a prevalent disease around the world. In this case, due to the mass dimensions and adjacent-organ compression, surgery was essential for a favourable clinical evolution.

Competências éticas em enfermagem: uma revisão da literatura / Capacidades éticas en enfermeria: una revisión de la literatura / Ethical skills in nursing: a literature review

O estudo é uma revisão da literatura referente a estudos realizados, relacionados com a temática do desenvolvimento de competênciaséticas nos estudantes de enfermagem. Em traços gerais, podemos concluir que a literatura analisada aponta para um aumento dacapacidade de raciocínio ético ao longo do curso. No entanto, segundo alguns estudos, nota-se uma maior frequência de comportamentosnão éticos. Daí a pertinência e importância do tema.

The study is a literature review on studies developed that address ethical skills development in nursing students. To resume, we canconclude that studies point to an increase in ethical reasoning as the student goes forward in the program. Although, in some studiesthere is an evidence of increase in no ethical behaviours, which makes this theme very pertinent and important.

El estudio es una revisión de la literatura que hace referencia a estudios realizados, relacionados con la temática del desarrollo decompetencias éticas en los estudiantes de enfermería. De modo general, podemos concluir que la literatura analizada señala a unaumento de la capacidad de razonamiento ético a través del curso. Sin embargo, según algunos estudios, se nota una mayorfrecuencia de comportamientos no éticos. Por este motivo es importante y oportuno reflexionar sobre el tema.

Consideraciones sobre la sexualidad en personas con discapacidad físico-motora / Considerations on sexuality in physically handicap patients

Con el objetivo de profundizar en la realidad sexual del discapacitado físico-motor se efectuó una investigación descriptiva y transversal durante el cuatrimestre marzo-junio de 1999, que incluyó a 45 adultos con este tipo de incapacidad, residentes en 14 sectores del Policlínico “Ernesto Che Guevara” del poblado de Boniato en Santiago de Cuba. Se comprobó que la sexualidad no era igualmente vivida por aquellos cuya lesión se había producido antes o después de la pubertad y que los conflictos de relación, la falta de pareja y los problemas sexuales resultaron ser más frecuentes en los primeros. Las actividades sexuales solitarias se realizaban menos que lo esperado y aunque existía inconformismo con el nivel de satisfacción sexual, no se hacía nada para mejorarla. Hallar pareja y eliminar problemas relativos a la lesión fueron las necesidades mayormente expresadas(AU)