Pediatric quality life

Status dystonicus is the most severe form of dystonia with life-threatening complications if not treated promptly. We present consensus recommendations for the initial management of acutely worsening dystonia (including pre-status dystonicus and status dystonicus), as well as refractory status dystonicus in children. This guideline provides a stepwise approach to assessment, triage, interdisciplinary treatment, and monitoring of status dystonicus. The clinical pathways aim to: (1) facilitate timely recognition/triage of worsening dystonia, (2) standardize supportive and dystonia-directed therapies, (3) provide structure for interdisciplinary cooperation, (4) integrate advances in genomics and neuromodulation, (5) enable multicenter quality improvement and research, and (6) improve outcomes...

Crohn's disease (CD) is a chronic inflammatory disease of the digestive tract. The incidence of pediatric CD is increasing and is currently 2.5-11.4 per 100000 world-wide. Notably, approximately 25% of children with CD develop stricturing CD (SCD) that requires intervention. Symptomatic stricturing diseases refractory to pharmacological management frequently require non-pharmacological interventions. Non-pharmacological therapeutic strategies include endoscopic balloon dilatation, stricturoplasty, and surgical resection of the strictured segment...

Electronic cigarettes, which deliver an aerosolized, nicotine-containing product upon inhalation, are a public health issue that continue to gain popularity among adolescents and young adults in the United States. Use of electronic cigarettes is wide, and extends to pediatric patients with multiple comorbidities, including childhood cancer, leaving them vulnerable to further negative health outcomes. Acute leukemias are the most common type of cancer in pediatric populations, and treatment outcomes for these patients are improving; consequently, there is an increased emphasis on the effect of behavioral lifestyle factors on quality of life in survivorship...

INTRODUCTION: The article focuses on the professional quality of life of medical residents, and specifically on compassion fatigue and compassion satisfaction. Previous studies have indicated high levels of emotional stress among residents. Most of these studies were conducted within the positivistic paradigm. The qualitative study concentrates on pediatric residents during ER rotations in both routine and pandemic times. AIMS: The research goal is to explore how compassion fatigue and compassion satisfaction are manifested among the residents...

Hemochromatosis (HC) is characterized by the progressive accumulation of iron in the body, resulting in organ damage. Endocrine complications are particularly common, especially when the condition manifests in childhood or adolescence, when HC can adversely affect linear growth or pubertal development, with significant repercussions on quality of life even into adulthood. Therefore, a timely and accurate diagnosis of these disorders is mandatory, but sometimes complex for hematologists without endocrinological support...

PURPOSE: Pediatric Hematopoietic Stem Cell Transplant (HSCT) profoundly affects various dimensions of parents' lives. Effective coping strategies are essential for improving psychological well-being and overall quality of life. Therefore, this study aimed to explore parental coping strategies with their child's HSCT challenges. DESIGN AND METHODS: This qualitative study was conducted in Iran from February to November 2023, utilizing conventional content analysis with purposive sampling...

BACKGROUND: Celiac disease (CD) mass screening remains controversial in part because of a paucity of data to support its benefit. The Autoimmunity Screening for Kids (ASK) study is a mass screening study for pediatric CD and type 1 diabetes in Colorado. METHODS: This study prospectively follows children ages 1-17 years who screened positive for tissue transglutaminase IgA autoantibodies (tTGA) in the ASK study subsequently referred for diagnostic evaluation. Children diagnosed with CD by biopsy or serologic criteria were included in this study...

INTRODUCTION: Children, adolescent, and young adult cancer survivors experience overall increased risks of infertility that are preventable through effective fertility preservation services prior to starting cancer treatment. Oncofertility care is the evidence-based practice of informing newly diagnosed cancer patients about their reproductive risks and supporting shared decision-making on fertility preservation services. Despite longstanding clinical guidelines, oncofertility care delivery continues to be limited and highly variable across adult and pediatric oncology settings...

PURPOSE: To explore the influence of postoperative Hirschsprung-associated enterocolitis (post-HAEC) on long-term outcomes and to identify risk factors of post-HAEC. METHODS: The medical records of 304 eligible patients diagnosed with Hirschsprung's disease (HSCR) were reviewed. We analyzed the clinical characteristics of post-HAEC and its influence on long-term outcomes. Furthermore, risk factors for early and recurrent HAEC were identified separately. RESULTS: The overall incidence of post-HAEC was 29...

Background : Maxillofacial microvascular free-flap reconstructions are significant interventions in the management of congenital defects, traumatic injuries, malignancies, and iatrogenic complications in pediatric and young adult patients. Craniofacial disorders within this demographic can result in profound functional, cosmetic, and psychosocial impairments, highlighting the critical need for thorough investigation into factors that may influence procedural success and postoperative quality of life. This retrospective chart review aims to examine the outcomes and potential influencing factors, aiming to offer valuable insights into optimizing the effectiveness of these reconstructions and improving patient outcomes...

OBJECTIVE: Responsive neurostimulation (RNS) is a US FDA-approved form of neuromodulation to treat patients with focal-onset drug-resistant epilepsy (DRE) who are ineligible for or whose condition is refractory to resection. However, the FDA approval only extends to use in patients with one or two epileptogenic foci. Recent literature has shown possible efficacy of thalamic RNS in patients with Lennox-Gastaut syndrome and multifocal epilepsy. The authors hypothesized that RNS of thalamic nuclei may be effective in seizure reduction for patients with multifocal or regionalized-onset DRE...

Objective  The Body Image Disturbance Questionnaire for Scoliosis (BIDQ-S) for scoliosis derives from the Body Image Disturbance Questionnaire (BIDQ) with specific adaptation for scoliosis patients. Despite its significance and applicability, this instrument has never been translated into Brazilian Portuguese. The current study aimed to translate, transculturally adapt, and validate the BIDQ-S into Brazilian Portuguese. Methods  BIDQ-S was translated and culturally adapted into Brazilian Portuguese using the American Association of Orthopedic Surgeons (AAOS) criteria...

BACKGROUND: Adolescents with type 1 diabetes mellitus suffer from diabetes distress and poor health-related quality of life (HRQOL) since living with the condition that differentiates them from their peers. The present study investigated the effects of peer support and stress on diabetes distress and HRQOL and whether positive coping mediated the effects. METHODS: We used a prospective study design. A total of 201 adolescents with type 1 diabetes mellitus from 20 cities in 4 provinces were recruited...

BACKGROUND: We performed this study to improve understanding of the relationship between functional tic-like behaviors (FTLBs) and quality of life, loneliness, family functioning, anxiety, depression, and suicidality. METHOD: This cross-sectional study assessed self-reported quality of life, disability, loneliness, depression, anxiety, family functioning, tic severity, and suicide risk in age- and birth-sex matched youth with FTLBs, Tourette syndrome (TS), and neurotypical controls...

BACKGROUND: Concussion in children and adolescents is a significant public health concern, with 30% to 35% of patients at risk for prolonged emotional, cognitive, sleep, or physical symptoms. These symptoms negatively impact a child's quality of life while interfering with their participation in important neurodevelopmental activities such as schoolwork, socializing, and sports. Early psychological intervention following a concussion may improve the ability to regulate emotions and adapt to postinjury symptoms, resulting in the greater acceptance of change; reduced stress; and recovery of somatic, emotional, and cognitive symptoms...

BACKGROUND: The use of a smartphone built-in microphone for auscultation is a feasible alternative to the use of a stethoscope, when applied by physicians. OBJECTIVE: This cross-sectional study aims to assess the feasibility of this technology when used by parents-the real intended end users. METHODS: Physicians recruited 46 children (male: n=33, 72%; age: mean 11.3, SD 3.1 y; children with asthma: n=24, 52%) during medical visits in a pediatric department of a tertiary hospital...

BACKGROUND: Pediatric heart (HTx) and kidney transplant (KTx) recipients may have lower physical fitness than healthy children. This study sought to quantify fitness levels in transplant recipients, investigate associations to clinical factors and quality of life, and identify whether a quick, simple wall-sit test is feasible as a surrogate for overall fitness for longitudinal assessment. METHODS: Aerobic capacity (6-min walk test, 6MWT), normalized muscle strength, muscle endurance, physical activity questionnaire (PAQ), and quality of life (PedsQL™) were prospectively assessed in transplanted children and matched healthy controls...

OBJECTIVE: To examine women's experiences of pelvic congestion syndrome (PCS) pain. DESIGN: Descriptive, cross-sectional. SETTING: Online questionnaires in a Facebook PCS support group. PARTICIPANTS: Convenience sample of 143 women who self-identified as being diagnosed with PCS. METHODS: We recruited women through a social media support group and invited them to participate in a self-reported questionnaire...

OBJECTIVE: To evaluate the efficacy and costs of a brief, group-delivered parenting intervention for families of children with eczema. METHODS: A randomized controlled trial design was used. Families attending the Queensland Children's Hospital and from the community (n = 257) were assessed for eligibility (child 2-10 years, diagnosed with eczema, prescribed topical corticosteroids). Families who consented to participate (N = 59) were assessed at baseline for clinician-rated eczema severity, parent-reported eczema symptom severity, and electronically-monitored topical corticosteroid adherence (primary outcomes); and parenting behavior, parents' self-efficacy and task performance when managing eczema, eczema-related child behavior problems, and child and parent quality of life (secondary outcomes)...

BACKGROUND: College students with disabilities need to transition from pediatric-centered care to adult care. However, they may become overwhelmed by multiple responsibilities, such as academic activities, peer relationships, career preparation, job seeking, independent living, as well as managing their health and promoting healthy behaviors. OBJECTIVE: As the use of smartphones and wearable devices for collecting personal health data becomes popular, this study aimed to compare the characteristics of self-tracking health practices between college students with disabilities and their counterparts...