Browse Items · Pediatric Palliative Care Library

Case study: the Interact Home Telehealth Project

Two home telehealth technologies (the Intel Health Guide and the Apple iPad) were trialled by four clinical services of the Hunter New England Local Health District. The iPad was selected by the Paediatric Palliative Care Service, the Stroke Service…

Causes and palliation of transfusion-associated vaginal bleeding in patients with metastatic cancer

PURPOSE: The current study was undertaken (1) to capture a clinically relevant, systematically collected series of patients with metastatic cancer and transfusion-associated vaginal bleeding and (2) to provide insight into how best to palliate this…

Changing geographies of care: employing the concept of therapeutic landscapes as a framework in examining home space

Changes in health care service delivery have resulted in the transfer of care from formal spaces such as hospitals and institutions towards informal settings such as home. Due to the degree of this transfer, it is increasingly important for…

Changing mortality in congenital heart disease

OBJECTIVES: This study sought to characterize temporal trends in all-cause mortality in patients with congenital heart disease (CHD). BACKGROUND: Historically, most deaths in patients with CHD occurred in early childhood. Notable advances have since…

Characteristics of Critically Ill Infants at the End of Life in the Neonatal Intensive Care Unit

Objectives: About 16,000 infants die in the neonatal intensive care unit (NICU) each year with many experiencing invasive medical treatments and high number of symptoms.1 To inform better management, we characterized diagnoses, symptoms, and patterns…

Clinical experience with oral methadone administration in the treatment of pain in 196 advanced cancer patients

PURPOSE: The aims of this study were to describe the analgesia, side effects, and dosage and the causes of suspension of treatment in a large sample of advanced cancer patients with pain after treatment with oral methadone from 7 to 90 days. PATIENTS…

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…

Clinical pharmacokinetics of morphine

Morphine, the most widely used mu-opioid analgesic for acute and chronic pain, is the standard against which new analgesics are measured. A thorough understanding of the pharmacokinetics of morphine is required in order to safely and effectively use…

Clinical problems with the performance of euthanasia and physician-assisted suicide in The Netherlands

BACKGROUND AND METHODS: The characteristics and frequency of clinical problems with the performance of euthanasia and physician-assisted suicide are uncertain. We analyzed data from two studies of euthanasia and physician-assisted suicide in The…

Clinical rating scale for pantothenate kinase-associated neurodegeneration: A pilot study

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…

Tags: 2017, Adolescent, Adult, Aged, Aguilera-Albesa S, Behavior, Castro C A, Child, Coelho M, Cognitive Dysfunction/di [Diagnosis], Cognitive Dysfunction/et [Etiology], Correia G L, Costa C, Cross-sectional Studies, Cuadras P D, Darling A, Disabled Persons, dystonia/di [Diagnosis], Dystonia/et [Etiology], Espinos C, Ferreira J, Garcia P J, Garrido C, Gaston I, Gavilan I T, Gonzalez G L, Gutierrez F, Hernandez L C, Humans, IND, Lin J P, Lorenzo S G, Lupo V, Madruga M, Magalhaes M, Marti M J, Marti S L, Martinez-Martin P, Martorell L, Mental Disorders/di [Diagnosis], Mental Disorders/et [Etiology], Middle Aged, Moreira F, Movement Disorders, Nardocci N, Ocular Motility Disorders/di [Diagnosis], Ocular Motility Disorders/et [Etiology], Ortigoza E J D, Pantothenate Kinase-Associated Neurodegeneration/co [Complications], Pantothenate Kinase-Associated Neurodegeneration/di [Diagnosis], Pantothenate Kinase-Associated Neurodegeneration/ge [Genetics], Parkinsonian Disorders/di [Diagnosis], Parkinsonian Disorders/et [Etiology], Perez D B, Pilot Projects, Pires P, PKANDRS, Pons R, Pujol M, Ramos L J, Rego P, Reproducibility of Results, Rodriguez-Blazquez C, scale development, Severity Of Illness Index, Stamelou M, Stefanis L, Tello C, Temudo T, Tomas V M, tone and motor problems, tool development, Tustin K, Vela L, Young Adult, Zorzi G

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.…

Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood

BACKGROUND: As an increasing number of patients with chronic conditions of childhood survive to adulthood, experts recommend that young adults with chronic conditions transfer from child-focused to adult-focused primary care. Little, however, is…

Communicating the benefits of chronic preventive therapy: does the format of efficacy data determine patients' acceptance of treatment?

Patients' informed acceptance of chronic medical therapy hinges on communicating the potential benefits of drugs in quantitative terms. In a hypothetical scenario of treatment initiation, the authors assessed how three different formats of the same…

Comparison of continuous subcutaneous and intravenous hydromorphone infusions for management of cancer pain

To compare the safety and efficacy of subcutaneous and intravenous infusion of opioid analgesics, a randomised, double-blind, crossover trial was carried out in inpatients. 15 patients with severe cancer pain received two 48 h infusions of…

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…

Conflict in the care of patients with prolonged stay in the ICU: types, sources, and predictors

OBJECTIVE: To determine types, sources, and predictors of conflicts among patients with prolonged stay in the ICU. DESIGN AND SETTING: We prospectively identified conflicts by interviewing treating physicians and nurses at two stages during the…

Continuity of care: influence of general practitioners' knowledge about their patients on use of resources in consultations.

OBJECTIVE--To examine the relation between general practitioners' knowledge about their patients and the use of resources in consultations. DESIGN--A cross sectional evaluation of consultations. SETTING AND SUBJECTS--A representative sample of 133…

Contrasting emotional approach coping with passive coping for chronic myofascial pain

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…

Coping with chronic pain

Many models of pain give coping an important role in understanding adaptation to chronic pain. Among these, Lazarus and Folkman's cognitive-phenomenological model of stress and coping provides a theoretical framework to conceptualise stress phenomena…

Coping, self-efficacy and psychiatric history in patients with both chronic widespread pain and chronic fatigue

OBJECTIVE: To investigate the relationship of coping style and self-efficacy to functional impairment in a group of patients with both chronic widespread pain (CWP) and chronic fatigue, as well as the possible mediating role of psychiatric diagnosis.…

Couples at risk following the death of their child: predictors of grief versus depression

This longitudinal study examined the relative impact of major variables for predicting adjustment (in terms of both grief and depression) among bereaved parents following the death of their child. Couples (N = 219) participated 6, 13, and 20 months…

Course of disability and respiratory function in untreated late-onset Pompe disease

Fifty-two untreated patients with late-onset Pompe disease completed questionnaires about their clinical condition and level of handicap at baseline and at 1-year (n = 41) and 2-year follow-ups (n = 40). During this period, declines in functional…

Crying out in pain-A systematic review into the validity of vocalization as an indicator for pain

BACKGROUND: Vocalization is often used to assess pain, sometimes combined with other behaviours such as facial expressions. Contrary to facial expressions, however, for vocalization, there is little evidence available on the association with pain.…

Tags: 2020, Achterberg WP, Aged, Aged 80 and over, April 2021 List, Child, Crying, de Vries R, European Journal Of Pain, Helmer LML, Humans, Lautenbacher S, Lobbezoo F, Pain Measurement, Pain/diagnosis, Sampson EL, Weijenberg RAF

Decisions to forgo life-sustaining therapy in ICU patients independently predict hospital death

OBJECTIVE: More than one-half the deaths of patients admitted to intensive care units (ICUs) occur after a decision to forgo life-sustaining therapy (DFLST). Although DFLSTs typically occur in patients with severe comorbidities and intractable acute…

Decreased proopiomelanocortin mRNA in lymphocytes of chronic alcoholics after intravenous human corticotropin releasing factor injection

BACKGROUND: Alcohol abuse may involve an altered neuroendocrine response that mediates lymphocyte-derived proopiomelanocortin (POMC) production and inflammation. We investigated POMC messenger RNA (mRNA) expression in human lymphocytes ex vivo and…

Deep Brain Stimulation in Rare Inherited Dystonias

Background Rare causes of inherited movement disorders often present with a debilitating phenotype of dystonia, sometimes combined with parkinsonism and other neurological signs. Since these disorders are often resistant to medications, DBS may be…

Designing pain research from the patient's perspective: What trial end points are important to patients with chronic pain?

Objectives. The goals of this study were to define the endpoints of pain research that are important to patients with chronic pain and to identify clinical and demographic variables that are associated with patients' choices of endpoints. Patients &…

Determinants of do-not-resuscitate orders in palliative home care.

OVERVIEW: Do-not-resuscitate (DNR) orders allow home care clients to communicate their own wishes over medical treatment decisions, helping to preserve their dignity and autonomy. To date, little is known about DNR orders in palliative home care.…

Development and preliminary validation of the 'Mind the Gap' scale to assess satisfaction with transitional health care among adolescents with juvenile idiopathic arthritis

BACKGROUND: To develop a scale to assess satisfaction with transitional health care among adolescents with a chronic illness and their parents. METHODS: The 'Mind the Gap' scale was developed using evidence from a previous needs assessment, in three…

Development, behaviour and seizures in 300 cases of tuberous sclerosis

Three hundred cases of tuberous sclerosis were surveyed by postal questionnaire, including 240 cases with learning difficulties. People who have tuberous sclerosis and severe learning disabilities also have a higher frequency of epileptic seizures…

Differences On Psychosocial Outcomes Between Male And Female Caregivers Of Children With Life-limiting Illnesses

This secondary analysis of data examined the psychosocial outcomes of meaning in caregiving, self-esteem, optimism, burden, depression, spirituality, and posttraumatic growth in 273 parents caring for children with life-limiting illnesses to (a)…

Diphosphonate treatment of Paget's disease

Ethane-1-hydroxy-1, 1-diphosphonate (EHDP) was administered in a dose of 20 mg/kg/d to 21 patients with symptomatic Paget's disease. All patients were treated for 6 months and then followed for an additional 6 months. There was a striking decline in…

Direct conversion from oral morphine to transdermal fentanyl: a multicenter study in patients with cancer pain

Direct conversion from oral morphine to transdermal fentanyl with a ratio of oral morphine/transdermal fentanyl (100:1 mg) daily was examined in patients with cancer pain. Patients with a 'stable and low level of cancer pain' receiving a constant…

Tags: 1996, Administration, Adult, Aged, Analgesics, Backlog, Cutaneous, Donner B, Female, Fentanyl, Humans, Journal Article, Male, Middle Aged, Morphine, Neoplasms, Opioid, Pain, Pain Measurement, Regression Analysis, Strumpf M, Tryba M, Zenz M

Disappearance of morphine-induced hyperalgesia after discontinuing or substituting morphine with other opioid agonists

Hyperalgesia and allodynia in 4 cancer patients treated with morphine disappeared after discontinuing or substituting morphine with other opioid agonists. The first case describes a young female who developed hyperalgesia and myoclonus during…

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…

Distance from home when death occurs: a population-based study of Washington State, 1989-2002

OBJECTIVE: For patients who die in hospitals, the regionalization of tertiary health care services may be increasing the home-to-hospital distance, particularly for younger patients whose care is especially regionalized and for whom access to and use…

Distinguishing starvation from cachexia

The poor response to hypercaloric feeding in ill adults may be caused by failure to distinguish cachexia from starvation (Table 1). The chief difference between starvation and cachexia is that refeeding reverses starvation but is less effective for…

Tags: 2002, Aged, Backlog, Cachexia/diagnosis, Clinics In Geriatric Medicine, Diagnosis, Differential, Energy Intake, Humans, Journal Article, Nutrition Assessment, Nutritional Status, Starvation/diagnosis, Thomas DR

Do parents want to be present during invasive procedures performed on their children in the emergency department? A survey of 400 parents

STUDY OBJECTIVES: No large study has addressed whether parents want to be present when invasive procedures are performed on their children in the emergency department. We conducted a survey to address this question. METHODS: The study used a…

Does a palliative care clinic have a role in improving end-of-life care? Results of a pilot program

OBJECTIVE: To assess the efficacy of a palliative care clinic (PCC), which provided some of the interdisciplinary services and expertise of an inpatient consult service to outpatients, in traditional clinic sessions. DESIGN: Chart review. SETTING: A…

Does palliative care improve quality? A survey of bereaved family members

Palliative care is the interdisciplinary specialty that aims to relieve suffering and improve the quality of care for patients with serious illness and their families. Although palliative care programs are becoming increasingly prevalent in U.S.…

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