Factors associated with health-related quality of life in children with sickle cell disease.

BACKGROUND: Sickle cell disease is an inherited haematological condition with life-threatening consequences. It can affect all aspects of the lives of children with the condition, including biopsychosocial and cognitive aspects. These children tend to have a low health-related quality of life (HRQoL). AIM: To identify factors associated with HRQoL in Omani children with sickle cell disease. METHOD: The study was a secondary analysis of data from a randomised controlled trial conducted with 72 parent-and-child dyads who were recruited from two tertiary hospitals in Oman. The aim of the original study was to examine the effects of an educational programme on the knowledge and self-efficacy of parents of children with sickle cell disease. As part of that study, parents and children completed two questionnaires on HRQoL, one generic and one specific to sickle cell disease. RESULTS: Parents' knowledge of sickle cell disease, parents' self-efficacy in managing their child's symptoms, parents' age, children's age and treatment with hydroxyurea were found to affect children's HRQoL. CONCLUSION: Healthcare providers need to include biopsychosocial and cognitive aspects of HRQoL in their assessments of children with sickle cell disease. Programmes designed to enhance parents' and children's knowledge and self-efficacy, as well as measures designed to ensure that children receive treatment with hydroxyurea, are likely to improve the HRQoL of children with sickle cell disease.

Parental psychosocial needs in Brazilian paediatric intensive care units.

BACKGROUND: Having children admitted in the intensive care unit is a demanding experience for parents. They encounter several difficulties during this process, and it is important to properly identify their psychosocial needs for the health team to address appropriately. OBJECTIVE: The aim of the study is to identify the psychosocial needs encountered by parents of children in pediatric intensive care units in Brazil. METHODS: A descriptive study with a qualitative approach was used to increase understanding of psychosocial experiences of parents. Individual semi-structured interviews were conducted with 11 parents of hospitalized children in pediatric intensive care units in Brazil. Thematic analysis was used to analyze the data. The university ethics review committee approved the research protocol. All parents were informed on study details and provided written consent prior to the interview. RESULTS: Four themes were constructed: 1) Support from family and peers; 2) Support from the healthcare team; 3) Parental role; and 4) Emotional recovery. Parents expressed diverse psychosocial needs based on family and peer social support, child's clinical condition, as well as the structure, norms, and routines of health care teams during hospitalization. CONCLUSIONS: The findings highlight the importance of nursing assessment of psychosocial experiences encountered by parents of children in pediatric intensive care units, which will guide planning of individualized interventions and to increase family-centered care in pediatric intensive care units.

Health status, healthcare, and access in children with long-term medication use and difficulties with emotion, concentration, and behavior.

PROBLEM: Children with chronic conditions often have difficulties with emotions, concentration, and behaviors (ECB) and are not recognized and treated adequately. In this paper, long-term medication use (LTM) was adopted as a proxy for chronic illness due to the lack of consistent and standardized diagnostic criteria for chronic illnesses in children. METHODS: Children (8-12 years) were selected from the California Health Interview Survey (2017) based on: (1) households with children (<12 years), (2) parent/adult caregivers report about child's health indicating "yes" to, (3) "does your child require prescription medicine for a health condition that has lasted or is expected to last at least 12 months or more," and (4) "difficulties with ECB in past 6 months." FINDINGS: A total of 1600 children were included by the CHIS data set, and children whose parental report had met the selection criteria were children with LTM (n = 144; 7.4 ± 2.9 years), ECB (n = 233; 8.16 ± 2.14), and both LTM + ECB (n = 62; 8.61 ± 1.81). Children with LTM+ ECB were Caucasian (56.4%), Hispanic (19.3%), and males (64.5%). Children with both LTM + ECB had two to three (33.87%) or at least four (53.2%) physician visits, and/or receiving special therapy (45.1%). Children with LTM had prescription delays (n = 144; 5.6%) and were not able to get medical care due to lack of insurance (n = 144; 6.9%). The majority of the children with LTM (54.2%) and LTM + ECB (43.5%) had parental employment-based insurance. More children that have both LTM and ECB (48.4%) than children with LTM, No ECB (32.9%) were on Medi-Cal/Medicaid. CONCLUSION: Children with LTM need further evaluation for difficulties with ECB. Future studies are required to examine health status, healthcare use, and access for children with LTM and ECB.

Factors associated with young adult engagement with a web-based sickle cell reproductive health intervention.

Objective: To determine the factors predicting the engagement of young adults who have sickle cell disease (SCD) or sickle cell trait (SCT) with an online reproductive health education intervention and engagement effects on knowledge. Methods: The cross-sectional study included 167 participants who completed the web-based intervention either face-to-face (F2F) or online delivery (OL). Measures include: time used relative to length of the intervention narration and media (engagement) and the SCKnowIQ questionnaire. Ordinal regression was conducted. Results: The sample mean age was 26-years (SD=5), 68% were female, 54% had SCD, and 68% were in the F2F group. Adjusting for age, partner sickle cell status, marital status, and education, participants who were female (p=.003), had SCD (p=.018), or had F2F delivery (p < .001) were more likely to spend more time on the intervention. Adjusting for baseline knowledge and modality, more time spent on the intervention was associated with higher posttest knowledge (p=.006). Conclusions: Future studies are necessary to understand reasons underpinning engagement and to investigate other unmeasured factors, such as intervention interactivity elements, that could also be associated with engagement. Innovation: This study of young adults with SCD or SCT provides much needed insight about their engagement with online reproductive health education.

Qualidade de vida da população infantojuvenil oncológica com e sem fadiga / Calidad de vida de la población infantojuvenil oncológica con y sin fatiga / Quality of life of cancer children-adolescents with and without fatigue

Resumo Objetivo Comparar os escores de qualidade de vida relacionada à saúde (QVRS) de crianças e adolescentes hospitalizados com câncer que apresentaram e não apresentaram fadiga e correlacionar fadiga e QVRS. Método Estudo transversal realizado durante 48 meses no setor de onco-hematologia de hospital público localizado no interior paulista, com 63 crianças e adolescentes com câncer. Para mensurar a fadiga e a QVRS, os participantes preencheram, respectivamente, os instrumentos Pediatric Quality of Life Inventory™ Escala Multidimensional do Cansaço e Pediatric Quality of Life Inventory™ Inventário Pediátrico de Qualidade de Vida, versão acute, no módulo genérico e módulo câncer. Os dados foram analisados por meio de estatística descritiva, bivariada e multivariada. Resultados As médias dos escores total de fadiga (61,2±16,3) e QVRS (genérica: 61,5±20,5; câncer: 61,2±16,3) foram baixas, demonstrando que as crianças e os adolescentes com câncer se apresentam fadigados (p=0,000) e com baixa qualidade de vida (p=0,000). No modelo de regressão, a fadiga pôde ser explicada em 61,25% pelas variáveis funcionamento emocional (p=0,0110), funcionamento escolar (p=0,0004) e dificuldades cognitivas (p=0,0017). Participantes sem fadiga apresentaram melhor escore médio de QVRS quando comparado ao grupo com fadiga. Conclusão Crianças e adolescentes hospitalizados com câncer apresentam baixa qualidade de vida e altos níveis de fadiga. Ainda, é positiva a relação entre algumas dimensões da QVRS com a fadiga, indicando que, quanto pior for o funcionamento escolar e emocional e maiores forem as dificuldades cognitivas, maior também será a fadiga.

Resumen Objetivo Comparar las puntuaciones de calidad de vida relacionadas con la salud (CVRS) de niños y de adolescentes hospitalizados con cáncer que presentaron y que no presentaron fatiga y correlacionar la fatiga y la CVRS. Métodos Estudio transversal realizado durante 48 meses en el sector de oncohematología de un hospital público ubicado en el interior del estado de São Paulo, con 63 niños y adolescentes con cáncer. Para medir la fatiga y la CVRS, los participantes rellenaron, respectivamente, los instrumentos Pediatric Quality of Life Inventory™ Escala Multidimensional del Cansacio y Pediatric Quality of Life Inventory™ Cuestionario de Calidad de Vida Pediátrica, versión acute, en el módulo genérico y en el módulo cáncer. Los datos fueron analizados por medio de estadística descriptiva, bivariada y multivariada. Resultados Los promedios de las puntuaciones total de fatiga (61,2±16,3) y CVRS (genérica: 61,5±20,5; cáncer: 61,2±16,3) fueron bajas, demostrando que los niños y los adolescentes con cáncer se muestran fatigados (p=0,000) y con baja calidad de vida (p=0,000). En el modelo de regresión, se puede explicar la fatiga en el 61,25 % por las variables funcionamiento emocional (p=0,0110), funcionamiento escolar (p=0,0004) y dificultades cognitivas (p=0,0017). Participantes sin fatiga presentaron mejor puntuación promedio de CVRS al compararlos con el grupo sin fatiga. Conclusión Niños y adolescentes hospitalizados con cáncer presentan baja calidad de vida y altos niveles de fatiga. Aun así, es positiva la relación entre algunas dimensiones de la CVRS con la fatiga, indicando que, cuanto peor sea el funcionamiento escolar y emocional y mayores sean las dificultades cognitivas, mayor será también la fatiga.

Abstract Objective To compare the health-related quality of life (HRQoL) scores of children and adolescents hospitalized with cancer who had and did not have fatigue and to correlate fatigue and HRQoL. Method This is a cross-sectional study carried out for 48 months in the onco-hematology sector of a public hospital located in the interior of São Paulo, with 63 children and adolescents with cancer. To measure fatigue and HRQoL, participants completed the instruments Pediatric Quality of Life Inventory™ Multidimensional Fatigue Scale and Pediatric Quality of Life Inventory™ Pediatric Quality of Life Inventory - acute version - in the generic module and cancer module. Data were analyzed using descriptive, bivariate and multivariate statistics. Results The means of the total fatigue scores (61.2±16.3) and HRQoL (generic: 61.5±20.5; cancer: 61.2±16.3) were low, demonstrating that children and adolescents with cancer are fatigued (p=0.000) and with low quality of life (p=0.000). In the regression model, fatigue could be explained in 61.25% by the variables emotional functioning (p=0.0110), school functioning (p=0.0004) and cognitive difficulties (p=0.0017). Participants without fatigue had better mean HRQoL score when compared to the group with fatigue. Conclusion Children and adolescents hospitalized with cancer have a low quality of life and high levels of fatigue. Furthermore, the relationship between some HRQoL dimensions and fatigue is positive, indicating that the worse the school and emotional functioning and the greater the cognitive difficulties, the greater the fatigue.

Pain Experience, Physical Function, Pain Coping, and Catastrophizing in Children With Sickle Cell Disease Who Had Normal and Abnormal Sensory Patterns.

CONTEXT: Sickle cell disease (SCD) is associated with recurrent pain that could lead to abnormal sensory patterns (ASPs). OBJECTIVES: The purpose of this study is to compare children with SCD who had normal sensory patterns (NSPs) and ASPs in pain experience, physical function, pain coping, and pain catastrophizing. METHODS: Children with quantitative sensory testing data were selected from a larger study that examined pain and symptoms in children with SCD. Comparisons were made between children with NSP (n = 35; 13.9 ± 1.9 years) and ASP (n = 13; 12.8 ± 1.9 years). Children completed the Adolescent Pediatric Pain Tool, Functional Disability Inventory, Pain Coping Questionnaire, and Pain Catastrophizing Scale. RESULTS: No significant differences were found in pain intensity (2.9 ± 3.0 vs. 2.6 ± 2.8 on 0-10 Visual Analogue Scale) between the NSP and ASP, respectively. The most common marked pain sites for both groups were lower extremities (22.9%), head and neck (20.8%), and upper extremities (20.8%). Functional Disability Inventory scores were significantly worse in ASP (38.5%) compared with NSP (11.4%). The ASP group had significantly worse scores in emotion-focused pain coping subscales. CONCLUSION: Children with SCD with ASP had worse functional disability, were expressing more affective pain quality, and had emotion-focused pain coping compared with NSP. Future studies are needed to examine the effectiveness of physical activities on the physical function as well as psychosocial interventions such as peer support and creative arts expression to minimize development of ASP in children with SCD.

Self-Management, Self-Efficacy, and Health-Related Quality of Life in Children With Chronic Illness and Medical Complexity.

INTRODUCTION: Children with chronic illnesses and medical complexity (CIMC) require frequent health-care use, thereby increasing medical care costs. We evaluated parent-child perceptions of self-management, self-efficacy, and health-related quality of life (HRQOL) in children with CIMC. METHOD: Parent-children pairs (n = 32) completed three measures before discharge from the hospital (Patient Activation Measure, Self-Efficacy Scale, and Acute Care-Pediatric Quality of Life for Children 8-12 and 13-17 years). RESULTS: Parents (56.3%) and children (40.6%) reported moderate levels of self-management. HRQOL was correlated with both self-management (r = .441, p = .12) and self-efficacy (r = .464, p = .008). At least 25% to 50% reported low PedsQL subscale scores (< 70), which indicate problems with physical, emotional, social, and mental domains. DISCUSSION: Our findings support the assessment of not only physical but also mental, emotional, and social needs in children with CIMC. We recommend development and testing strategies promoting self-management and self-efficacy to maximize HRQOL and improve health outcomes in children with CIMC.

Quality of Life and Pain Experienced by Children and Adolescents With Cancer at Home Following Discharge From the Hospital.

An exploratory study was conducted to examine the quality of life and pain experienced by patients with pediatric cancer at home after discharge. Physical, cognitive, social, and emotional aspects of quality of life were measured and how these may be affected by age, sex, diagnosis, and pain status. The authors also characterized intensity, location, and quality of pain experienced. A sample of 33 patients participating in a larger study was selected on the basis of having pain on the day of discharge and having completed the Pediatric Quality of Life Inventory Generic, Cancer Module, Multidimensional Fatigue Scale, and the Adolescent Pediatric Pain Tool at home. Cancer diagnoses were leukemias/lymphomas (42.4%), brain/central nervous system tumors (27.3%), sarcomas (24.2%), or other (6.1%). More than half of patients reported pain (n=17; 51.5%). Patients with pain had more fatigue affecting the quality of life (P=0.01), and lower physical and emotional functioning, leading to lower overall health-related quality of life scores (P=0.011). Female individuals and adolescents reported worse emotional functioning (P=0.02 and P=0.05, respectively). Physical, cognitive, and social functioning were lowest among patients diagnosed with sarcomas (P=0.00, P=0.01, and P=0.04, respectively). It is important to understand the symptom experience of patients at home as a first step in moving towards optimal discharge teaching and treatment.

Multi-level Intervention Program - A Quality Improvement Initiative to Decrease Central Line-Associated Bloodstream Infections in the Pediatric Acute and Hematology/Oncology Units.

INTRODUCTION: Central Venous Catheters (CVCs) are placed in pediatric patients that require frequent and/or long-term access for intravenous treatments and increase the risk for Central line-associated bloodstream infections (CLABSIs). The specific aims of the study were to evaluate adherence to the intervention components and rates of Central Line Associated Bloodstream Infections (CLABSIs) over five years. METHODS: Implementation occurred on the acute care and hematology-oncology pediatric units of a quaternary health care setting in Southern California. Adherence rates were quantified using a CVC audit sheet and CLABSI rates were obtained quarterly before, and at year 1, 2, 3, 4, 5 of implementation. RESULTS: CLABSI rates for both pediatric units decreased over the five-year period. Adherence rates were 90% to 100% on the different features of the intervention; the lowest was adherence to Patient Protective Equipment (PPE). A total of 41 incidents of hospital-acquired CLABSIs were reported the year prior to the Bug Buster Committee, which decreased steadily to 9 incidents after implementation. The quarterly CLABSI rates in the Pediatric Acute Care ranged from 2.8 to 6.6/1,000 catheter days and in Pediatric Hematology-Oncology from 2.1 to 4.3/1,000 catheter days the year prior to implementation. CONCLUSIONS: While adherence for staff remains high, parent/family adherence was low. We recommend including in the multi-level intervention, procedures targeting parent adherence such as patient education handouts, reviewing content on admission, placing signs on doors indicating PPE requirements, and promptly providing PPE to non-adherent family members.

Prevention of Morbidity in Sickle Cell Disease (POMS2a)-overnight auto-adjusting continuous positive airway pressure compared with nocturnal oxygen therapy: a randomised crossover pilot study examining patient preference and safety in adults and children.

DESIGN: This randomised crossover trial compared nocturnal auto-adjusting continuous positive airway pressure (APAP) and nocturnal oxygen therapy (NOT) in adults and children with sickle cell anaemia, with patient acceptability as the primary outcome. Secondary outcomes included pulmonary physiology (adults), safety, and daily pain during interventions and washout documented using tablet technology. METHODS: Inclusion criteria were age > 8 years and the ability to use an iPad to collect daily pain data. Trial participation was 4 weeks; week 1 involved baseline data collection and week 3 was a washout between interventions, which were administered for 7 days each during weeks 2 and 4 in a randomised order. Qualitative interviews were transcribed verbatim and analysed for content using a funnelling technique, starting generally and then gaining more detailed information on the experience of both interventions. Safety data included routine haematology and median pain days between each period. Missing pain day values were replaced using multiple imputation. RESULTS: Ten adults (three female, median age 30.2 years, range 18-51.5 years) and eleven children (five female, median age 12 years, range 8.7-16.9 years) enrolled. Nine adults and seven children completed interviews. Qualitative data revealed that the APAP machine was smaller, easier to handle, and less noisy. Of 16 participants, 10 preferred APAP (62.5%, 95% confidence interval (CI) 38.6-81.5%). Haemoglobin decreased from baseline on APAP and NOT (mean difference -3.2 g/L (95% CI -6.0 to -0.2 g/L) and -2.5 g/L (95% CI -4.6 to 0.3 g/L), respectively), but there was no significant difference between interventions (NOT versus APAP, 1.1 (-1.2 to 3.6)). Pulmonary function changed little. Compared with baseline, there were significant decreases in the median number of pain days (1.58 for APAP and 1.71 for NOT) but no significant difference comparing washout with baseline. After adjustment for carry-over and period effects, there was a non-significant median difference of 0.143 (95% CI -0.116 to 0.401) days additional pain with APAP compared with NOT. CONCLUSION: In view of the point estimate of patient preference for APAP, and no difference in haematology or pulmonary function or evidence that pain was worse during or in washout after APAP, it was decided to proceed with a Phase II trial of 6 months APAP versus standard care with further safety monitoring for bone marrow suppression and pain. TRIAL REGISTRATION: ISRCTN46078697 . Registered on 18 July 2014.

Pain, sleep patterns and health-related quality of life in paediatric patients with cancer.

PURPOSE: To compare sleep and health-related quality of life (HRQOL) in children and adolescents with cancer who had pain, with those who had no pain during hospitalisation. METHOD: A prospective comparative study was used to collect data from paediatric oncology units in three countries (Portugal, Brazil, USA). Participants (n = 118; 8-18 years) completed the Quality of Life Inventory (PedsQL) Cancer module, which includes a pain subscale, and wore a wrist actigraph for at least 72 hr. RESULTS: Almost half of the participants (48.3%) reported having pain. Sleep patterns were not affected by pain. Girls, adolescents and patients diagnosed with leukaemia/lymphoma who reported pain, had significantly lower HRQOL scores. Low sleep duration and HRQOL were found, irrespectively of pain status. CONCLUSIONS: The low sleep duration and HRQOL score in children and adolescents with cancer highlight the importance of physical and psychosocial nursing interventions during hospitalisation. The mediating effect of gender, age and diagnoses on the relation between pain and HRQOL needs to be further understood.

Frequency, Severity, and Distress Associated With Physical and Psychosocial Symptoms at Home in Children and Adolescents With Cancer.

Malignancy- and cancer-related treatments lead to multiple symptoms. Although treatments focus on cure, few research studies have examined the symptoms that accompany these aggressive and complicated treatments. The purpose of the study was to evaluate the symptoms experienced by children at home. Children (n = 25) and adolescents (n = 33) diagnosed with cancer completed the Memorial Symptoms Assessment Scale during the 5 days at home after discharge from the hospital. The most frequent physical symptoms were fatigue (52.1%), nausea (50.7%), lack of appetite (43.7%), and pain (42.3%). The most frequent psychological symptoms were difficulty sleeping (21.1%), worrying (18.3%), feeling sad (18.3%), and feeling nervous (16.9%). Significant differences were found in the overall physical and psychosocial symptoms and Global Distress Index in patients with and without pain, fatigue, and nausea. Results indicated that physical and psychosocial symptoms and Global Distress Index increased as severity of pain, nausea, and fatigue increased. Children and adolescents were experiencing many symptoms at home but were often not reporting them.

Validation of the Adolescent Pediatric Pain Tool for the Multidimensional Measurement of Pain in Children and Adolescents Diagnosed with Osteogenesis Imperfecta.

Background: The Adolescent Pediatric Pain Tool (APPT) is a self-reported, multidimensional assessment of pain location, intensity, and quality in children and adolescents. Yet, it has not been validated for use in children and adolescents with osteogenesis imperfecta (OI). Aims: This study aimed to validate and evaluate the feasibility of the APPT for pain assessment in children and adolescents with OI. Methods: A prospective observational study was conducted at a university-affiliated pediatric hospital in Canada. Thirty-three children and adolescents with OI participated by completing the APPT pre-bisphosphonate intravenous infusion and 1 week post-bisphosphonate intravenous infusion. Main outcomes were internal consistency, convergent and discriminative validity, and feasibility. Results: The Kuder-Richardson test of internal consistency was 0.863, 0.661, and 0.729 for the Sensory, Affective, and Evaluative subscales, respectively. For the entire pain quality scale, the Cronbach's alpha was 0.835. Regarding convergent validity, a moderate correlation was observed between the ratings on the pain intensity scale and the Faces Pain Scale-Revised (Spearman's rho = 0.711). Patients for whom pain was a problem reported higher pain intensity (Mann Whitney U = 41.50, P = 0.032) and more pain quality descriptors (Mann Whitney U = 45.50, P = 0.020) and painful body areas (Mann-Whitney U = 25.50, P = 0.001) than those for whom it was not (Mann-Whitney U, P < 0.05). In terms of feasibility, completing the tool may require a considerable time commitment and assistance from a clinician or parent, especially if the patient is experiencing pain and provides detailed pain location and quality information by completing the APPT. Conclusions: This study suggests that the APPT is valid for the multidimensional assessment of pain in children and adolescents with OI, but feasibility needs to be enhanced.

Contexte: L'outil d'évaluation de la douleur des adolescents en pédiatrie (APPT) est une évaluation multidimensionnelle auto-déclarée de l'emplacement, de l'intensité et de la qualité de la douleur chez les enfants et les adolescents. Toutefois, l'utilisation de cet outil auprès des enfants et des adolescents souffrant d'ostéogénèse imparfaite n'a pas encore été validée.But: Cette étude avait pour but de valider et d'évaluer la faisabilité de l'APPT pour l'évaluation de la douleur dans cette population.Méthodes: Une étude observationnelle prospective a été menée dans un centre hospitalier universitaire à vocation pédiatrique au Canada. Trente-trois enfants et adolescents atteints d'ostéogénèse imparfaite ont participé à cette étude en répondant à l'APPT avant l'infusion intraveineuse de bisphosphonate et une semaine après celle-ci. Les principaux résultats étaient la cohérence interne, la validation convergente et discriminante, et la faisabilité.Résultats: Le résultat du test de Kuder-Richardson pour mesurer la cohérence interne était de 0,863 pour le sensoriel, 0,661 pour l'affectif et 0,729 pour les sous-échelles d'évaluation. Pour l'échelle de qualité de la douleur au complet, l'indice alpha de Cronbach était de 0,835. En ce qui concerne la validation convergente, une corrélation modérée a été observée entre les scores obtenus à l'échelle d'intensité de la douleur et le FPS-R (Rho de Spearman= 0,711). Les patients pour lesquels la douleur était problématique ont fait état d'une intensité de la douleur plus élevée, ont eu recours à un plus grand nombre de descripteurs de la qualité de la douleur et ont identifié davantage de parties du corps douloureuses que ceux pour lesquels la douleur n'était pas problématique (Mann-Whitney U, p < 0,05). En ce qui concerne la faisabilité, le temps requis pour répondre au questionnaire peut être considérable et l'aide d'un clinicien ou d'un parent peut être nécessaire, particulièrement si le patient ressent de la douleur et donne de l'information détaillée sur la localisation et la qualité de la douleur en répondant à l'APPT.Conclusions: Selon cette étude, l'APPT est valide pour l'évaluation multidimensionnelle de la douleur chez les enfants et les adolescens souffrant d'oastéogénèse imparfaite, mais sa faisabilité doit être améliorée.

Cross-cultural adaptation of the adolescent pediatric pain tool for brazilian children and adolescents with cancer / Adaptación cultural del instrumento adolescent pediatric pain tool para niños y adolescentes brasileños con cáncer / Adaptação cultural do instrumento adolescent pediatric pain tool para crianças e adolescentes brasileiros com câncer

ABSTRACT Objective: to describe the steps in the cross-cultural adaptation process of the Adolescent Pediatric Pain Tool, a pain assessment measure, for use with Brazilian children and adolescents with cancer. Method: a methodological and cross-sectional study was undertaken. The steps in the cross-cultural adaptation process of the tool that resulted in the semantic validation followed an adapted method, including: initial translation, consensus version of translations, evaluation by Expert Committee, back-translation, comparison with original tool and actual semantic validation. Results: the initial translation process of the tool until the final consensus was reached took approximately four months. In the evaluation by the Expert Committee, three health professionals participated in the study, who were knowledgeable on the theme and mastered the English language. In the semantic validation, 35 children and adolescents aged between eight and 18 unfinished years participated, who were patients at the institution where children and adolescents with cancer were treated and monitored. After concluding all steps, the researchers met to discuss the proposed changes. At the end of the cross-cultural adaptation process of the Adolescent Pediatric Pain Tool, all initially proposed 67 pain descriptors were maintained in their Portuguese version. Conclusion: the steps in the cross-cultural adaptation process of the Adolescent Pediatric Pain Tool were executed and described in detail, evidencing the rigorous development of the study.

RESUMEN Objetivo: describir las etapas realizadas en el proceso de adaptación cultural del instrumento de evaluación del dolor Adolescent Pediatric Pain Tool, para niños y adolescentes brasileños con cáncer. Método: se trata de un estudio metodológico y transversal. Las etapas recorridas del proceso de adaptación cultural del instrumento hasta la validación semántica siguieron un método adaptado que comprendió: traducción inicial, síntesis de las traducciones, evaluación por el Comité de Especialistas, retrotraducción, comparación con el instrumento original y validación semántica propiamente dicha. Resultados: el proceso de traducción inicial del instrumento hasta la obtención del consenso final tardó, aproximadamente, cuatro meses. En la etapa de evaluación por el Comité de Especialistas, participaron del estudio tres profesionales del área de la salud, con conocimiento en la temática y dominio de la lengua inglesa. Para la etapa de validación semántica, participaron 35 niños y adolescentes de ocho a 18 años incompletos, atendidos en la institución donde se realizaban el tratamiento y el seguimiento de niños y adolescentes con cáncer. Después de la conclusión de todas las etapas, los investigadores se reunieron para discutir los cambios propuestos. Al final de la adaptación cultural del instrumento Adolescent Pediatric Pain Tool, los 67 descriptores del dolor, propuesto inicialmente se mantuvieron en su versión portuguesa. Conclusión: las etapas del proceso de adaptación cultural del Adolescent Pediatric Pain Tool se alcanzaron y su descripción detallada, para evidenciar el rigor en la conducción del estudio.

RESUMO Objetivo: descrever as etapas realizadas no processo de adaptação cultural do instrumento de avaliação da dor Adolescent Pediatric Pain Tool, para crianças e adolescentes brasileiros com câncer. Método: trata-se de um estudo metodológico e transversal. As etapas percorridas do processo de adaptação cultural do instrumento até a validação semântica seguiram um método adaptado que compreendeu: tradução inicial, síntese das traduções, avaliação pelo Comitê de Especialistas, retrotradução, comparação com o instrumento original e validação semântica propriamente dita. Resultados: o processo de tradução inicial do instrumento até a obtenção do consenso final levou, aproximadamente, quatro meses. Na etapa de avaliação pelo Comitê de Especialistas, participaram do estudo três profissionais da área da saúde, com conhecimento na temática e domínio da língua inglesa. Para a etapa de validação semântica, participaram 35 crianças e adolescentes de oito a 18 anos incompletos, atendidos na instituição onde eram realizados o tratamento e o seguimento de crianças e adolescentes com câncer. Após a conclusão de todas as etapas, os pesquisadores se reuniram para discutir as mudanças propostas. Ao final do processo de adaptação cultural do Adolescent Pediatric Pain Tool, todos os 67 descritores da dor, propostos inicialmente, foram mantidos em sua versão em português. Conclusão: as etapas do processo de adaptação cultural do Adolescent Pediatric Pain Tool foram alcançadas e sua descrição detalhada de forma a evidenciar o rigor na condução do estudo.

Cultural adaptation of the Adolescent Pediatric Pain Tool in Turkish children with cancer.

PURPOSE: Pain is very common among pediatric cancers. This study aimed to assess the reliability and validity of the Turkish version of the Adolescent Pediatric Pain Tool (APPT). METHODS: In this methodological study, language validity and content validity of the words in the third section of the scale, which was administered to children with cancer, were tested using the Q-sort method. The APPT was used to measure test-retest reliability once for each of the 1st, 2nd and 3rd weeks of the chemotherapy protocols for 30 children. A reliability test was conducted using the APPT for 96 children with cancer. RESULTS: The number of words included in the third section of the APPT was reduced to 56 following the completion of the language and content validity using the Q-sort method. In the test-retest method, results from the three measures taken showed that the intra-class correlation coefficient was good. The internal consistency of the scale was also good (α = .78) in terms of the total number of body areas marked on body outline diagram, pain severity, pain intensity ratings, total number of word descriptors, and total number of sensory, affective, evaluative and temporal word descriptors. Correlations were found between the total number of body areas marked on the body outline diagram and the total number of word descriptors (r = .53), the pain severity and pain intensity ratings (r = .95), and the total number of word descriptors (r = .38). CONCLUSIONS: The Turkish version of the APPT was determined to be valid, reliable and easy to use for pediatric cancer patients.

Eating Behaviors, Weight Bias, and Psychological Functioning in Multi-ethnic Low-income Adolescents.

PURPOSE: The purposes of this study were to: 1) Describe the incidence of disordered eating, weight bias, body dissatisfaction, and psychological distress, 2) Examine the relationship between sociodemographic variables (gender, ethnicity, and income) and disordered eating, weight bias, body dissatisfaction, and psychological distress in a sample of low-income adolescents. DESIGN AND METHODS: A cross-sectional study was conducted with 105 adolescents from low-income neighborhoods. Participants completed self-report questionnaires to assess eating behaviors, weight bias, body dissatisfaction, and psychological functioning. Height and weight were measured, and information on household income was collected. RESULTS: The participant's mean age was 16.31 (SD=2.8) years, 66% female, 47% Hispanic, and 46% African American. The mean annual income was $17,018 (SD=11,355). Twenty-eight percent self-reported having some form of disordered eating, and 15% reported an eating disorder. The group with eating disorder reported the highest levels of weight bias (M=93.4, SD=109.6), body dissatisfaction (M=94.6, SD=47.6), and psychological distress (M=1.4, SD=0.97). CONCLUSION: This study found a high prevalence of eating disorders with eating disorder participants experiencing the highest levels of weight bias and psychological distress. Future studies are needed to identify and evaluate community and school-based interventions to minimize weight bias and disordered eating. PRACTICE IMPLICATIONS: Nurses are at the forefront of healthcare and should collaborate with educators, school counselors, administrators, coaches, parents, and students, to address weight bias and disordered eating in schools by implementing school-based curriculum and policies.

Fatigue and health related quality of life in children and adolescents with cancer.

PURPOSE: The study examined the different dimensions of fatigue (general, sleep/rest, cognitive), health related quality of life (HRQL) (physical, emotional, cognitive, social), and the relationships between fatigue and HRQL in hospitalized children and adolescents with cancer in Brazil. METHOD: Participants were recruited from a pediatric oncology inpatient unit in a comprehensive cancer care hospital in southeast Brazil. They completed the PedsQL Multidimensional Fatigue Scale and the PedsQL Inventory of Quality of Life (Generic and Cancer module) once during hospitalization. RESULTS: The majority (66.7%) of the participants (n = 38; mean age 12.1 ± 2.9 years) had total fatigue scores < 75 on 0 to 100 scale; with the mean total fatigue score of 63.8 ± 18.5. The majority (72.2% generic; 83.3% cancer modules) had total PedsQL scores < 75 on 0 to 100 scale. The mean PedsQL score on generic module (61.1 ± 17.0) was similar to the mean PedsQL score cancer module (59.1 ± 16.7). Significant correlations were found between total fatigue and quality of life generic (r = 0.63, p = 0.000) and cancer module (r = 0.74, p = 0.000). CONCLUSIONS: The study is the first to report fatigue and health related quality of life in hospitalized children and adolescents with cancer in Brazil. Similar to experiences of other children in the world, our findings indicate that children and adolescents with cancer had problems with fatigue that were associated with low HRQL. Future studies are recommended to examine interventions (exercise, leisurely activities) that may alleviate fatigue and improve HRQL in pediatric patients with cancer.

Simvastatin reduces vaso-occlusive pain in sickle cell anaemia: a pilot efficacy trial.

Sickle cell anaemia (SCA) is a progressive vascular disease characterized by episodic vaso-occlusive pain. Despite the broad impact of inflammation on acute and chronic clinical manifestations of SCA, no directed anti-inflammatory therapies currently exist. Statins are cholesterol-lowering agents shown to confer protection from vascular injury by suppressing inflammation. We previously documented a reduction in soluble biomarkers of inflammation in patients with sickle cell disease treated with simvastatin. To determine the potential clinical efficacy of simvastatin, we treated 19 SCA patients with single daily dose simvastatin for 3 months and assessed changes from baseline in the frequency and intensity of diary-reported pain and levels of circulating nitric oxide metabolites (NOx), high sensitivity C-reactive protein (hs-CRP), vascular cell adhesion molecule 1 (VCAM-1), intercellular adhesion molecule 1 (ICAM-1), ICAM-3, E-selectin, and vascular endothelial growth factor (VEGF). Treatment with simvastatin resulted in a significant reduction in the frequency of pain (P = 0·0003), oral analgesic use (P = 0·003) and circulating hs-CRP (P = 0·003), soluble (s)E-selectin (P = 0·01), sICAM-1 (P = 0·02), sICAM-3 (P = 0·02) and sVEGF (P = 0·01). Simvastatin had no effect on pain intensity or levels of NOx, sP-selectin and sVCAM-1. The observed reductions in pain rate and markers of inflammation were greatest in subjects receiving hydroxycarbamide (HC), suggesting a synergistic effect of simvastatin. These results provide preliminary clinical data to support a larger trial of simvastatin in SCA.

Depression, Anxiety, and Quality of Life In Children and Adolescents With Sickle Cell Disease.

The relationships among depression, anxiety, and quality of life were tested, as were the effects of age, gender, and pain frequency on these variables in children (n = 44) and adolescents (n = 31) with sickle cell disease. Participants completed the Revised Child Anxiety and Depression Scale (ROADS) and the Pediatric Quality of Life (PedQL Generic Model). The mean and standard deviation for summary RCADS scores for the majority of participants were below the clinical thresholds of T < 65, indicating low risk for depression (n = 65; 89.3%) and anxiety (n = 70; 93.3%). The subscale scores for the different dimensions of QOL health were a) psychosocial (73.3 ± 15.9), b) emotional (75.0 ± 20.7), c) social (80.8 ± 19.1), d) school functioning (64.0 ≥ 19.8), and e) physical (77.4 ± 17.4). Significant negative correlations were found between mean total quality of life scores and symptoms of a) general anxiety (r = -0.51, p < 0.0001), b) depression (r = -0.66, p < 0.0001), c) obsessive compulsive (r = -0.53, p < 0.0001), d) panic (r = -0.60, p < 0.0001), and e) social phobia (r = -0.57, p < 0.0001). Age and gender did not have significant effects on risk for depression and anxiety or poor QOL. Pain frequency also did not have significant effects on the risk for depression and anxiety. Findings suggest that health care providers need to screen for anxiety and depression, and make referrals for early interventions to improve quality of life and promote school function in youth with sickle cell disease.