Browse Items (22 total)

Purpose: Deep brain stimulation is now widely accepted as an effective treatment for children with primary generalized dystonia. More variable results are reported in secondary dystonias and its efficacy in this heterogeneous group has not been fully…

OBJECTIVE: Firstly, this paper aims to systematically review the mitochondrial disease literature to identify studies assessing the needs and problems in the daily life of children with a mitochondrial disease and of their parents and family. The…

BACKGROUND: Sampling in the absence of accurate or comprehensive information routinely poses logistical, ethical, and resource allocation challenges in social science, clinical, epidemiological, health service and population health research. These…

SummaryAim To quantify any effect of Standardised Order Forms (SOFs), versus hand-written note entries for ‘Do Not Attempt Resuscitation’ – on the selection and survival of remaining cardiopulmonary resuscitation (CPR) attempts. Methods A…

A longitudinal feasibility study regarding quality of life and interventions for patients with advanced cancer or AIDS and their family caregivers was conducted to determine issues related to their recruitment and retention and to obtain pilot data…

Cachexia is a disturbing and disfiguring aspect of many advanced cancers. Parenteral nutrition (PN) is a controversial and expensive treatment for cancer cachexia. Guidelines for the use of PN for these patients have been suggested. These two case…

Systematic assessment of the effect of clinical research studies on child and parent participants has been limited. Such assessment could provide an empirical basis for the ethical conduct of research, assisting investigators and institutional review…

BACKGROUND: The growth of palliative care research has been limited by challenges of slow recruitment and underenrollment. One potential solution to this problem is the use of screening questions embedded in clinical data collection, which identify…

OBJECTIVE--To investigate the use and implementation in pediatric intensive care units (PICUs) of three levels of restriction of medical intervention: do not resuscitate (DNR), additional limitations of medical interventions beyond DNR, and…

In appropriately selected patients, PCA safely provides analgesia superior to that obtained with traditional IM prn opioid administration; however, to date, no compelling evidence shows that PCA is associated with a reduction in morbidity or a more…

AIM: Children with refractory or high-risk malignancies frequently suffer from poor quality of life during palliative care. This study explored the effect of metronomic drug administration on survival and quality of life in paediatric patients with…

CONTEXT: Pediatric palliative care randomized controlled trials (PPC-RCTs) are uncommon. OBJECTIVES: To evaluate the feasibility of conducting a PPC-RCT in pediatric cancer patients. METHODS: This was a cohort study embedded in the Pediatric Quality…

BACKGROUND:
When healthcare professionals or other involved parties prevent eligible patients from entering a trial as a research subject, they are gatekeeping. This phenomenon is a persistent problem in palliative care research and thought to be…
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