Browse Items (346 total)

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…

OBJECTIVE: The purpose of this review of published literature was to identify the number and focus of empirically based papers that included research methods used to directly solicit patient-reported outcomes (PRO) from pediatric oncology patients at…

Introduction: The high incidence and prevalence of chronic pain in patients with CF is well documented. In patient surveys, reports of intense pain range from 33% - 82% of respondents. Commonly reported sources of pain include headache, sinuses,…

Pediatric palliative care (PPC) focuses on children and adolescents with life-limiting diseases. It may be initiated at various points of the disease trajectory, if possible early enough to support living with the best possible quality of life…

BACKGROUND: End-of-life decisions (EoLDs) are very difficult to make. How parents and physicians incorporate quality of life (QoL) considerations into their end-of-life decision making (EoLDM) for children with profound intellectual and multiple…

BACKGROUND: When curative treatments are no longer options for patients dying of cancer, the focus of care often turns from prolonging life to promoting quality of life (QOL). Few data exist on what predicts better QOL at the end of life (EOL) for…

PURPOSE: To compare quality of life of children with cancer with no reasonable chance of cure reported by parents 6 months or fewer versus more than 6 months before death. PATIENTS AND METHODS: This cross-sectional study included children between the…

The care of children in the U.S. with life-limiting illnesses is inadequate. Misallocated resources, flawed assumptions and models of care, and a lack of appropriate professional education foster a costly, inefficient system that falls short of its…

OBJECTIVE: To describe goals of care for children with complex, life-limiting conditions and to assess the variables that may influence these goals. METHODS: Goals of care were elicited from the parents and children with complex, life-limiting…

Pediatric surgeons can play an important role in offering procedures that may improve the quality of life for terminally ill children. As with all palliative interventions, surgical therapies should be evaluated in the context of explicitly defined…

Consensus exists that a do-not-attempt-resuscitation order (DNAR) is appropriate if a resuscitation attempt is futile. Less agreement exists when this point is reached. We investigated the influence of three major considerations for in-hospital DNAR…

Hospices were founded to alleviate suffering at the end of life. Quality improvement in hospices should, therefore, target patients' subjective assessments of their care and its outcomes. However, little is known about the relationships among…

The objective of the study was to determine whether teams providing specialist palliative care improve the health outcomes of patients with advanced cancer and their families or carers when compared to conventional services. The study involved a…

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…

This is the first report on the McGill Quality of Life Questionnaire (MQOL), a questionnaire relevant to all phases of the disease trajectory for people with a life-threatening illness. This questionnaire differs from most others in three ways: the…

SCOPE OF THE REPORT: This report is concerned with the evaluation of measures broadly designed to measure quality of life (QoL) in children and adolescents, either by self-report or proxy raters. Four research questions were identified: (1) To what…

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 authors assessed the test-retest reliabilities of two treatment-preference instruments recently applied to the measurement of the utilities of health states after different treatment modalities for cancer. The first instrument measures the…

This study was carried out in eight palliative care services in four Canadian cities. A revised version of The McGill Quality of Life Questionnaire (MQOL) is compared to a single-item scale measuring overall quality of life (SIS), and the…

Feeding difficulties are common in neurologically impaired children, often leading to great distress and frustration in the child and family. A gastrostomy may be advocated if oral intake is inadequate causing poor weight gain or when there is…

OBJECTIVE: To determine the frequency of selective nontreatment of extremely premature, critically ill, or malformed infants among all infant deaths in a level III intensive care nursery (ICN) and to determine the reasons documented by neonatologists…

OBJECTIVE: To prospectively determine opinions of members of a pediatric intensive care unit (PICU) team regarding the appropriateness of aggressive care. The types of support that caregivers sought to limit and their reasons for wanting these limits…

Using data from Americans' Changing Lives: Wave 1, 1986, this study examined the long-term effects on the personal functioning of older women and men following the death of an adult child or a spouse. Guided by Weiss's (1993) theoretical framework,…

Despite the universality of dying, research has not focused on developing conceptual models and measurement tools for examining the quality of care and quality of life of dying patients and their loved ones. We present here a vision and research…

One hundred fifty-nine young adults in the 17-18 year old age group suffering from chronic disease or handicap participated in this study which examined their attitudes towards enforced treatment and euthanasia in terminal patients. The comparison…

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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