Browse Items · Pediatric Palliative Care Library

Disease severity in children and adults with Pompe disease related to age and disease duration

Information about 255 children and adults with Pompe disease was gathered through a questionnaire. Disease severity was associated with disease duration and not with age; an early manifestation of the disease implied earlier wheelchair or ventilator…

Clinical manifestation and natural course of late-onset Pompe's disease in 54 Dutch patients

Late-onset Pompe's disease (acid maltase deficiency, glycogen storage disease type II) is a slowly progressive myopathy caused by deficiency of acid alpha-glucosidase. Current developments in enzyme replacement therapy require detailed knowledge of…

Not ready for hospice: characteristics of patients in a pre-hospice program

CONTEXT: There are many patients with terminal illness for whom hospice care would be appropriate, but they either never enroll or enroll very late. In a pre-hospice program designed to help patients make the transition into hospice, we observed that…

Prognostication in hospice care: can the palliative performance scale help?

BACKGROUND: Accurate prognostication of the trajectory of an illness provides multiple benefits in end-of-life care. Prognostic information facilitates more realistic decision making regarding ongoing treatment, fosters risk-benefit considerations of…

Psychological distress in cancer patients assessed with an expert rating scale

The purpose of this study was to investigate psychosocial stress in a large sample of cancer patients using an expert rating scale. Specific aims were to analyse the relevance of setting variables (type of clinic, contact initiative, therapy) and…

Relationship between three palliative care outcome scales

BACKGROUND: Various scales have been used to assess palliative outcomes. But measurement can still be problematic and core components of measures have not been identified. This study aimed to determine the relationships between, and factorial…

The reflections you get': an exploration of body image and cachexia.

BACKGROUND: cachexia has a detrimental effect on quality of life and is an indicator of poor prognosis. The meanings people attach to their lived experiences of cachexia are unknown. AIMS: to explore the impact of cachexia on body image of people…

The Role of Social Support in Coping with Daily Pain among Patients with Rheumatoid Arthritis

Using a daily process methodology, the current study examined the role of social support in coping and pain severity among patients with rheumatoid arthritis (RA). Seventy-three adults with RA completed a structured record twice daily for one week on…

The impact of a palliative medicine consultation service in medical oncology.

This prospective study of consecutive patients describes the palliative medicine consult service in a tertiary level cancer center and its impact on patient care. All inpatients/outpatients referred to the Palliative Medicine Program in a 4-month…

Psychometric properties of the Dutch version of the posttraumatic growth inventory among cancer patients

In the current study, we investigated the psychometric properties of a Dutch translation of the posttraumatic growth inventory in a heterogeneous group of cancer patients. Its original five-factor structure was maintained. The internal consistency of…

Identifying potential need for cancer palliation in Nova Scotia

OBJECTIVE: To assess the degree to which Nova Scotia cancer patients who may need palliative care are being referred to the comprehensive Halifax-based Palliative Care Program (PCP). METHODS: The authors conducted a retrospective, population-based…

The effectiveness of a self-reporting bedside pain assessment tool for oncology inpatients

BACKGROUND: Pain is common during cancer treatment, and patient self-reporting of pain is an essential first step for ideal cancer pain management. However, many studies on cancer pain management report that, because pain may be underestimated, it is…

Intravenous morphine for emergency treatment of cancer pain

Despite the wide use of the World Health Organization (WHO) analgesic ladder for the relief of cancer pain, it is not uncommon to find patients presenting with severe pain to palliative care centres. This is more so in the developing world, where…

Usefulness of consecutive biomarkers measurement in the management of community-acquired pneumonia.

The aim of this study was to investigate whether procalcitonin (PCT), neopterin,

Complexities in prognostication in advanced cancer: "to help them live their lives the way they want to"

Predicting survival and disclosing the prediction to patients with advanced disease, particularly cancer, is among the most difficult tasks that physicians face. With the de-emphasis of prognosis in favor of diagnosis and therapeutics in the medical…

A communication strategy and brochure for relatives of patients dying in the ICU

BACKGROUND: There is a need for close communication with relatives of patients dying in the intensive care unit (ICU). We evaluated a format that included a proactive end-of-life conference and a brochure to see whether it could lessen the effects of…

Symptom pathways from referral to death: measuring palliative care outcomes.

This article reports on the first stage of a process to develop a clinical performance indicator for a community-based palliative care service that may inform the development of an agreed set of indicators for the whole sector. The study explores…

Resource utilization for ovarian cancer patients at the end of life: how much is too much?

OBJECTIVE: End-of-life (EOL) medical care consumes 10-12% of national health care expenditures and 27% of Medicare dollars annually. Studies suggest that hospice services decrease EOL expenditures by 25-40%. The goal of this study was to compare the…

Handgrip strength and mortality in the oldest old population: the Leiden 85-plus study

BACKGROUND: Poor muscular strength has been shown to be associated with increased morbidity and mortality in diverse samples of middle-aged and elderly people. However, the oldest old population (i.e., over 85 years) is underrepresented in such…

Prospective study of symptom control in 133 cases of palliative care inpatients in Shatin Hospital

We report a prospective study assessing the prevalence and severity of physical and nonphysical symptoms, and the benefits from treatment and intervention, in advanced cancer patients presenting to a local palliative care unit in Hong Kong. Patients…

The Spanish version of the dementia quality of life questionnaire: a validation study

BACKGROUND: The aim of the study was to adapt and validate culturally the dementia-specific health-related quality of life instrument (HRQoL) into Spanish for patients with mild to moderate dementia. METHODS: Two forward translations, a reconciled…

Comfort care for terminally ill patients. The appropriate use of nutrition and hydration

OBJECTIVE--To determine the frequency of symptoms of hunger and thirst in a group of terminally ill patients and determine whether these symptoms could be palliated without forced feeding, forced hydration, or parenteral alimentation.…

Efficacy and tolerability of levetiracetam versus phenytoin after supratentorial neurosurgery

BACKGROUND: Antiepileptic drugs are routinely given after craniotomy. Though phenytoin (PHT) is still the most commonly used agent, levetiracetam (LEV) is increasingly administered for this purpose. This retrospective study compared the use of LEV…

Reducing family members' anxiety and uncertainty in illness around transfer from intensive care: an intervention study

INTRODUCTION: This intervention study examines anxiety and uncertainty in illness in families transferring from intensive care to a general ward. METHODS: The pre-test, post-test design purposively allocated family members to a control (n = 80) and…

Beta-endorphin, Met-enkephalin and corresponding opioid receptors within synovium of patients with joint trauma, osteoarthritis and rheumatoid arthritis

OBJECTIVE: Intra-articularly applied opioid agonists or antagonists modulate pain after knee surgery and in chronic arthritis. Therefore, the expression of beta-endorphin (END), Met-enkephalin (ENK), and mu and delta opioid receptors (ORs) within…

First documented rhythm and clinical outcome from in-hospital cardiac arrest among children and adults

CONTEXT: Cardiac arrests in adults are often due to ventricular fibrillation (VF) or pulseless ventricular tachycardia (VT), which are associated with better outcomes than asystole or pulseless electrical activity (PEA). Cardiac arrests in children…

Goal setting as a measure of outcome in palliative care

Setting goals and assessing outcomes are essential elements in palliative care. This paper describes a multiprofessional project, conducted under the auspices of clinical audit, which attempted to evaluate important outcomes of care. Over a six-month…

The course of the terminal phase in patients with amyotrophic lateral sclerosis

The fear of "choking to death" is on the mind of most patients suffering from amyotrophic lateral sclerosis (ALS). So far, however, there have been no systematic surveys concerning the dying phase in a general ALS population. We therefore performed a…

Meaning in caregiving and its contribution to caregiver well-being.

This multivariate study examined the relationship between meaning in caregiving--positive beliefs about the caregiving situation and the self as caregiver--and the psychological well-being of 131 informal caregivers to community-residing frail…

The benefits of a hospital-based inpatient palliative care consultation service: preliminary outcome data

This report describes the multiple complementary analytic methods used to create a composite evaluation of the benefits of a hospital-based inpatient palliative care consultation service at Montefiore Medical Center in its preliminary phase. We…

Breast cancer patients' attitudes about rationing postlumpectomy radiation therapy: applicability of trade-off methods to policy-making

PURPOSE: Along with evidence, clinical policies must take patients' values into account. Particularly where evidence is limited and where assumptions of utility-maximizing behavior may not be valid, new methods such as trade-off techniques (TOTs),…

Brain and gut neuropeptides in peripheral blood mononuclear cells

Neuropeptides, initially thought to be common features of gut and brain, are only synthesized in immune cells and modulate immune functions. The presence and possible functions of these peptides in immune cells in both physiological or pathological…

Outcome evaluation in a home palliative care service

The complexity of assessing the impact of palliative care is much greater than in other fields of medicine, due to the shortcomings of traditional outcome indicators. We conducted a prospective study to describe the patient's quality of life at the…

Neostigmine for the treatment of acute colonic pseudo-obstruction

BACKGROUND: Acute colonic pseudo-obstruction -- that is, massive dilation of the colon without mechanical obstruction -- may develop after surgery or severe illness. Although it may resolve with conservative therapy, colonoscopic decompression is…

The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence, characteristics and distress

The Memorial Symptom Assessment Scale (MSAS) is a new patient-rated instrument that was developed to provide multidimensional information about a diverse group of common symptoms. This study evaluated the reliability and validity of the MSAS in the…

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