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.

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.

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.

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.

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).

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.

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.

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.

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

: 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). : This study aimed to validate and evaluate the feasibility of the APPT for pain assessment in children and adolescents with OI.

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.

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.

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.

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.

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.

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.

Barriers to care and quality of primary care services in children with sickle cell disease.

Aims: The aims of this study were: to (1) identify barriers to care in children with sickle cell disease; (2) examine the quality of primary care services received by these children and (3) examine the relationship between barriers to care and quality of primary care services in children with sickle cell disease.

Background: Effective management in children with sickle cell disease requires early access to a comprehensive range of preventive screenings, urgent care treatments for vaso-occlusive pain crisis and ongoing prophylactic treatments.

Design: A cross-sectional survey of parents of children with sickle cell disease was conducted between April-September 2011.

Prevention of Morbidity in sickle cell disease--qualitative outcomes, pain and quality of life in a randomised cross-over pilot trial of overnight supplementary oxygen and auto-adjusting continuous positive airways pressure (POMS2a): study protocol for a randomised controlled trial.

Background: Sickle cell anaemia (SCA) is an inherited disorder of haemoglobin. Patients experience long-term health care problems, affecting quality of life (QOL) including frequent acute pain, which is difficult to document in trials except as hospital admissions. Pilot data suggests that overnight respiratory support, either supplementary oxygen or auto-adjusting continuous positive airways pressure (APAP), is safe and may have clinical benefit.

Fatigue and Sleep Experiences at Home in Children and Adolescents With Cancer.

Purpose/objectives: To (a) investigate fatigue and sleep patterns of children and adolescents at home and (b) examine factors associated with fatigue and sleep..

Design: Descriptive with repeated measures
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Diffusion Tensor Imaging and Neurobehavioral Outcome in Children With Brain Tumors Treated With Chemotherapy.

Background: Childhood brain tumor survivors (CBTS) often experience treatment-related neurocognitive deficits affecting quality of life (QOL), but systemic chemotherapy contributions to outcomes are unclear. Our objective was to relate brain tissue changes to neurocognitive and QOL effects after systemic myeloablative chemotherapy with autologous hematopoietic progenitor cell rescue in CBTS.

Procedure: Regional brain volumes and diffusion tensor indices were correlated with neurocognitive, behavioral, and QOL measures, and compared between 8 CBTS (mean age 8.

Cultural adaptation to Brazil of the questionnaire Costs of caring for children with cancer.

Objective: to present the cultural adaptation of the questionnaire Costs of caring for children with cancer, offering a valid and reliable tool to assess the economic repercussions of childhood cancer for Brazilian families.

Method: it is a methodological research with a cross-sectional design. The methodological framework to validate the questionnaire was a combined process that included seven steps: translation to Portuguese; first translated consensus version; evaluation by Expert Committee; consensus on the Expert Committee version; back-translation; consensus of back-translated versions; semantic validation.

Sensory and Thermal Quantitative Testing in Children With Sickle Cell Disease.

Very little is known about pain processing in sickle cell disease (SCD). We examined the mechanical and thermal sensory patterns in children with SCD. Children ages 10 to 17 years (n = 48; mean 13.