Browse Items (71 total)

INTRODUCTION: The Pediatric Palliative Screening Scale (PaPaS Scale) was designed to help professionals to identify life-limiting or life-threatening children/young people with complex chronic conditions who would benefit from pediatric palliative…

The Delphi technique is an approach used to gain consensus among a panel of experts. This is normally achieved through a series of rounds where information is fed back to panel members using questionnaires. It has been used extensively within social…

The Hammersmith functional motor scale for children with spinal muscular atrophy was modified to establish a standard measure of functional ability in children with non-ambulant spinal muscular atrophy types 2 and 3 in a longitudinal multi-center…

Mitochondrial diseases affect all age groups, but those with childhood onset often seem to experience the greatest burden of disability. In some paediatric patients this can be explained by a cumulative disability acquired over many years. In others,…

A short form of the Posttraumatic Growth Inventory (PTGI-SF) is described. A sample of 1351 adults who had completed the Posttraumatic Growth Inventory (PTGI) in previous studies provided the basis for item selection. The resulting 10-item form…

AIM: This study aimed to systematically review the psychometric properties and clinical utility of measures of activities of daily living (ADL) for children with cerebral palsy (CP) aged 5 to 18 years. METHOD: Five electronic databases were searched…

OBJECTIVE: To systematically review the accuracy of physicians' clinical predictions of survival in terminally ill cancer patients. DATA SOURCES: Cochrane Library, Medline (1996-2000), Embase, Current Contents, and Cancerlit databases as well as hand…

This study assessed the validity of active and passive coping dimensions in chronic pain patients (n = 76) using the Coping Strategies Questionnaire and the Vanderbilt Pain Management Inventory. The validity of active and passive coping dimensions…

The psychometric characteristics of the Faces Pain Scale (FPS) were evaluated in three groups of preschool and school-aged children (3. 5-4.5; 4.5-5.5 and 5.5-6.5 years, respectively). The FPS was adequately comprehended by even young children. It…

Despite increasing emphasis on advance directives, there has been little methodologic work to assess preferences about the "do not resuscitate" (DNR) order. This developmental work assessed, in a non-patient group, the performance of a…

Epilepsy has a significant impact on a child's life, the extent to which is based on four factors: epilepsy, cognition, behavioral, and physical/neurologic function. This study evaluates the ability of the 44-item Impact of Childhood Neurologic…

The timing of the measurement of biological samples (e.g. biomarkers) is not always standardized. Biomarkers are the focus of many recent studies and treatments. The purpose of this study was to determine the timing of the release of beta-endorphin…

The Delphi technique enables the structuring of group opinion and discussion using a survey approach, maintaining the anonymity of panel members and preventing contamination of individual responses through peer pressure. The Delphi technique was used…

OBJECTIVE: Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality…

During the past decade, palliative care at home has become an alternative option to hospital care for terminally ill children. This study describes the experience of caring for a dying child at home from a parent's perspective. A qualitative research…

OBJECTIVE: This report describes the consensus outcome of an interdisciplinary workshop that was held at the National Institutes of Health in April 2001. The purpose of the workshop and this article are to define the terms "spasticity," "dystonia,"…

BACKGROUND: Pantothenate kinase-associated neurodegeneration is a progressive neurological disorder occurring in both childhood and adulthood. The objective of this study was to design and pilot-test a disease-specific clinical rating scale for the…

The Paediatric Pain Profile (PPP) is a 20-item behaviour rating scale designed to assess pain in children with severe neurological disability. We assessed the validity and reliability of the scale in 140 children (76 females, mean age 9 years 11…

Improving our ability to prevent or diminish suffering in dying children and adolescents and their families is dependent on the completion of high-quality pediatric end-of-life studies. The purpose of this article is to provide useful evidence-based…

AIM: The aim of this paper was to provide insight into the Delphi technique by outlining our personal experiences during its use over a 10-year period in a variety of applications. BACKGROUND: As a means of achieving consensus on an issue, the Delphi…

Passive or emotion-focused coping strategies are typically related to worse pain and adjustment among chronic pain patients. Emotional approach coping (EAC), however, is a type of emotion-focused coping that appears to be adaptive in some nonpain…

PURPOSE: This study aims to develop a scale to assess the stress of nurses caring for terminally ill children and to test the validity and reliability of the scale. BACKGROUND: Nurses caring for children experience various stressors that are…

The Paediatric Pain Profile (PPP) is a 20-item behavior-rating scale designed to assess pain in children with severe to profound neurological impairment. Three raters independently used the PPP to rate behavior of 29 children (mean age 9.6, SD 5.8)…

The purposes of this study were to replicate a recent report of the positive effects of hand splinting on the stereotypic hand movement of children with Rett syndrome and to evaluate the generality of these results to a different setting. Two…

The goal of good palliative care is to relieve suffering and to improve quality of life. However, it is clear that access to palliative care is inconsistent. At least in part, these deficiencies exist because of a lack of solid evidence on which to…

INTRODUCTION: A growing number of children and young people are surviving severe acquired brain injuries due to advances in healthcare. However, many fail to emerge from coma and continue to live with disorders of consciousness (DOC). Diagnostic,…

This study focuses on descriptive accounts of one Macmillan nurse's work, as provided by key individuals coming into contact with this specialist professional service. Twenty respondents (eight patients, five carers, five district nurses and two…

IMPORTANCE: Children with medical complexity (CMC) represent a growing population in the pediatric health care system, with high resource use and associated health care costs. A genetic diagnosis can inform prognosis, anticipatory care, management,…

OBJECTIVES: The aim of this research was to validate global and behavioral observation methods for measuring pain in children with cerebral palsy (CP)., MATERIALS AND METHODS: Nineteen children diagnosed with CP (2-21 years of age) and their primary…

The outcomes of clinical trials are based on the mean responses of large numbers of subjects but fail to address inter-individual differences. The molecular mechanisms that underlie pain vary among individuals over time and among different types of…

This paper reports the development and validation of a disease-specific measure of health status and well-being of children with severe cerebral palsy (CP). The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) was…
Output Formats

atom, dcmes-xml, json, omeka-xml, rss2