Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterised by progressive and permanent physical and cognitive decline. The impact of such conditions on families, and notably on siblings, has not yet been…
ABSTRACT: BACKGROUND: The Palliative Performance Scale (PPS) was first introduced in1996 as a new tool for measurement of performance status in palliative care. PPS has been used in many countries and has been translated into other languages.…
Introduction
Pulmonary hemorrhage is an uncommon event in infants. It has been described most commonly in the sick premature neonate, older child, or adolescent with chronic cardiopulmonary disease. Acute idiopathic pulmonary hemorrhage in…
This retrospective study analysed data for 703 children who died from 2000 to 2006 to examine where children with a broad range of progressive, life-limiting illnesses actually die when families are able to access hospital, paediatric hospice…
OBJECTIVE: To characterize the natural progression of infantile-onset Pompe disease. STUDY DESIGN: Retrospective chart reviews of 168 patients with documented acid alpha-glucosidase deficiency and symptom onset by 12 months of age; Kaplan-Meier…
The objectives of the study were to evaluate the psychometric properties and appropriateness of instruments for the study of resilience in adolescents. A search was completed using the terms resilience and instruments or scales using the EBSCO…
BACKGROUND: There is a positive relationship between parent and young child distress during cancer treatment. Dimensions of parent/child distress are multifaceted and associated with family function and quality of life outcomes. A critical…
Methadone, although having been available for approximately half a century, is now receiving increasing attention in the management of chronic pain. This is due to recent research showing that methadone exhibits at least three different mechanisms of…
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,…
OBJECTIVE: This scoping literature review, through finding and assessing researched bereavement service outcomes, sought to determine the state of bereavement services evaluation, to catalogue service types, and to identify which service or services,…
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…
BACKGROUND: Pain that occurs both within and outside of the hospital setting is a common and distressing problem for adolescents with cancer. The use of smartphone technology may facilitate rapid, in-the-moment pain support for this population. To…
After turning away from prescribed narcotics, a wounded Army sergeant has found hope. And some doctors see lessons for the business of long-term pain management.
Abstract Background: Outpatient palliative care services can improve patient outcomes, yet little is known about their structure and characteristics. Objective: To describe the structure and characteristics of outpatient palliative care services…
Context No consensus exists about the most appropriate dose ratio for conversion from parenteral to oral ketamine. Objectives To confirm that a 1:1 dose ratio is suitable for converting subcutaneous (s.c.) to oral ketamine in cancer patients. Methods…
• The records of 455 children were reviewed to investigate the relationship of nutritional status at time of first referral to various measurements of disease and survival. Initial symptoms of weight loss, anorexia, fatigue, and early satiety were…
PURPOSE: To compare IRB processes in 68 U.S. hospitals for the same multicenter study. DESIGN: Survey of IRB processes in 68 U.S. hospitals during 2001-2002. METHODS: Requirements of IRB submission including type and duration of review and…
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 identify psychometrically sound measures of outcomes in end-of-life care and to characterize their use in intervention studies.Data Sources. English language articles from 1990 to November 2005 describing measures with published…
OBJECTIVE: Review and analyze the evidence base comprising methadone conversion methods and associated dosing ratios for the treatment of pain. DESIGN: Systematic review. METHODS: Clinical trials and retrospective analyses, case series, and case…
OBJECTIVE: To conduct a systematic review of published research on the pharmacologic treatment of pain after spinal cord injury (SCI). DATA SOURCES: MEDLINE, CINAHL, EMBASE, and PsycINFO databases were searched for articles published 1980 to June…
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…
ABSTRACT: BACKGROUND: Being a family carer to a patient nearing the end of their life is a challenging and confronting experience. Studies show that caregiving can have negative consequences on the health of family carers including fatigue, sleep…
The purpose of this family-focused, grounded-theory study was to develop a substantive theory that explains how individual family members heal in the aftermath of youth suicide. Individual healing following youth suicide is conceptualized as a…
This report investigates the elements of care that are important to individuals at the end of their life. It argues that for too long the focus has been where people want to die rather than how. It delves deeper into the components of care that…
Pilot studies for phase III trials - which are comparative randomized trials designed to provide preliminary evidence on the clinical efficacy of a drug or intervention - are routinely performed in many clinical areas. Also commonly know as…
The aim of this study was to assess prospectively changes in the health-related quality of life (HRQL) of children and adolescents with diabetes, asthma or cystic fibrosis (CF). One hundred and twenty-two parents of children aged 10-16 years with…
Fatigue in adults with cancer has received considerable attention as a troublesome symptom that requires nursing intervention. Fatigue in children with cancer, however, has received considerably less focus. The first phase of the present study used…
