This paper describes the development of a video-based evaluation tool for use in Rett syndrome (RTT). Components include a parent-report checklist, and video filming and coding protocols that contain items on eating, drinking, communication, hand…
Rikkunshito (TJ-43), a herbal medicine consisting of eight herbs, is used to treat chronic dyspepsia. Studies have shown that TJ-43 improves human gastric emptying. This study investigated the effects of TJ-43 on the clinical symptoms and esophageal…
Background: Hand stereotypies are considered a hallmark of Rett syndrome (RTT) and are usually described as symmetric movements at the midline. However, related pathologies may show the same type of involuntary movement. Furthermore, patients with…
Health psychology is a rapidly expanding discipline at the interface of psychology and clinical medicine. This new edition is fully reworked and revised, offering an entirely up-to-date, comprehensive, accessible, one-stop resource for clinical…
Archival data from a survey of parent observations was used to determine the prevalence of social and behavioral problems in children with agenesis of the corpus callosum (ACC). Parent observations were surveyed using the Child Behavior Checklist…
Throughout the long history of opioid drug use by humans, it has been known that opioids are powerful analgesics, but they can cause addiction. It has also been observed, and is now substantiated by multiple reports and studies, that during opioid…
Background Few studies have investigated functional and behavioural variables of Cornelia de Lange Syndrome (CdLS) in a large sample of individuals. The aim of this study is to provide greater insight into the clinical, behavioural and cognitive…
Adrenoleukodystrophy (ALD) is an X-linked disorder caused by a defect in the metabolism of long chain fatty acids leading to demyelination, neurodegeneration, and death. The disease typically presents in young boys and adolescent boys. Allogeneic…
BACKGROUND: Providing ongoing family centred support is an integral part of childhood cancer care. For families living in regional and remote areas, opportunities to receive specialist support are limited by the availability of health care…
OBJECTIVES: To address the lack of synthesis regarding the factors, processes, and outcomes specific to the transition from child-centered to adult-centered health care for people with cerebral palsy (CP) and spina bifida (SB); more specifically, to…
PURPOSE: To examine US and United Kingdom (UK) parents' approaches to care and treatment when standard therapy has failed and consider implications for clinical practice. METHODS: We conducted a prospective, ethnographic study of parents, patients,…
OBJECTIVE: To evaluate the psychosocial functioning of fathers as primary caregivers of pediatric oncology patients. METHODS: Fathers who identified themselves as the primary medical caregivers were given a packet of questionnaires, including the…
This case study assesses the effect that health and social care had on the chronic life-limiting condition of a young man going through transition from children's to adult services. He was taken into foster care at 16 years old and placed with his…
Cystic fibrosis is a multisystem disease characterized primarily by chronic pulmonary infection and bronchiectasis, pancreatic exocrine impairment, and elevated sweat chloride. In the last 4 decades, new treatment strategies and aggressive…
CONTEXT: Multiple pathogenic mechanisms may be involved in generating the migraine symptom complex, and multimechanism-targeted therapy may confer advantages over monotherapy. OBJECTIVE: To evaluate the efficacy and safety of a fixed-dose tablet…
OBJECTIVES: Despite 56% of child deaths occurring in inpatient hospital settings, who these children are and how they die has not been fully described. The purpose of this study was to identify the characteristics of those infants and children who…
This article surveys worldwide medical, ethical, and legal trends and initiatives related to the concept of pain management as a human right. This concept recently gained momentum with the 2004 European Federation of International Association for the…
Objective:The purpose of this study was to identify factors important to parents in their infant's end-of-life care.Study Design:Participants were parents (n=19 families) whose infant (less than 1 year old) had died. Parents completed the Revised…
Studies report a clear association between medication non-adherence and an unfavorable transplant outcome. The adolescent population, in particular, has difficulty adhering to post-transplant medication regimens. The purpose of this study is to…
PURPOSE OF REVIEW: Over the past 15 years, the lysosomal storage diseases have become paradigms for the specific treatment of monogenic disorders, particularly those affecting children. This review summarizes the phenotypes and recent literature…
OBJECTIVE: This study aimed to assess the cost effectiveness of ziprasidone versus haloperidol in sequential intramuscular (IM)/oral treatment of patients with exacerbation of schizophrenia in Spain. METHODS: A cost-effectiveness analysis from the…
OBJECTIVE: To examine whether physicians or parents assume responsibility for treatment decisions for critically ill children and how this relates to subsequent parental experience. A significant controversy has emerged regarding the role of parents,…
The medical practitioner in the community is in a unique position to assist children and their families from the time of diagnosis with a life-threatening condition through to the end of life. The purpose of this article is to inform medical…
This article investigates the relationships of child- and family-related variables with family function in families with children who have Duchenne muscular dystrophy. Child-related variables included level of disability (indicator: Barthel Index)…
BACKGROUND: While there has been a rapid increase of inpatient palliative care (PC) programs, the financial and clinical benefits have not been well established. OBJECTIVE: Determine the effect of an inpatient PC consultation service on costs and…
OBJECTIVE: Our goal was to determine which of 3 analgesics, acetaminophen, ibuprofen, or codeine, given as a single dose, provides the most efficacious analgesia for children presenting to the emergency department with pain from acute musculoskeletal…
BACKGROUND AND OBJECTIVE: Although there are general guidelines for adolescents with chronic illnesses making the transition from paediatric to adult health care, there are few studies which evaluate transition programs. This cross-sectional study…
The adolescents with asthma are a distinct group of patients with different problems and needs compared to children and adults. Specific issues of asthma in adolescence are the variability of the clinical spectrum, the presence of particular risk…
PURPOSE: Palliative sedation therapy (PST) is a controversial issue. There is a need for internationally accepted definitions and standards. METHODS: A systematic review of the literature was performed by an international panel of 29 palliative care…
OBJECTIVES: We sought to determine the clinical spectrum, survival, and long-term functional outcome of a cohort of pediatric patients with mitochondrial diseases and to identify prognostic factors. METHODS: Medical charts were reviewed for 73…
As health researchers we need to investigate a wide range of topics to enhance our understanding of the many issues that affect health and well-being in today's society. Much of the health research undertaken today involves face-to-face encounters…
