Journal of pediatric hematology/oncology
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J. Pediatr. Hematol. Oncol. · Oct 2011
ReviewPalliative care and the cancer patient: current state and state of the art.
Comprehensive cancer care requires the integration of palliative care practices and principles across the trajectory of the cancer experience. It complements the treatment of curable disease and may be the sole focus of care for those patients with advanced incurable disease. ⋯ There are numerous barriers to the provision of integrated care, including the ongoing misconception that palliative care is end-of-life care, the "cure-care dichotomy," inadequate training of health professionals and lack of resources. This article reviews the essential elements of comprehensive cancer care and the challenges to providing integrated cancer and palliative care to patients world-wide.
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J. Pediatr. Hematol. Oncol. · Oct 2011
Clinical TrialMeasuring death-related anxiety in advanced cancer: preliminary psychometrics of the Death and Dying Distress Scale.
The alleviation of distress associated with death and dying is a central goal of palliative care, despite the lack of routine measurement of this outcome. In this study, we introduce the Death and Dying Distress Scale (DADDS), a new, brief measure we have developed to assess death-related anxiety in advanced cancer and other palliative populations. We describe its preliminary psychometrics based on a sample of 33 patients with advanced or metastatic cancer. ⋯ Dying and death-related distress was positively associated with depression and negatively associated with spiritual, emotional, physical, and functional well-being, providing early evidence of construct validity. This distress was relatively common, with 45% of the sample scoring in the upper reaches of the scale, suggesting that the DADDS may be a relevant outcome for palliative intervention. We conclude by presenting a revised 15-item version of the scale for further study in advanced cancer and other palliative populations.
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J. Pediatr. Hematol. Oncol. · Oct 2011
Case ReportsInfluenza A (H1N1) in a pediatric patient with newly diagnosed acute promyelocytic leukemia and invasive pulmonary aspergillosis.
Influenza A (H1N1) pandemic reached its peak in Europe in autumn 2009. H1N1 infection can be a serious complication in patients with comorbidity or immunodepression. Here, we report of a boy with newly diagnosed acute promyelocytic leukemia with a very severe respiratory distress caused by influenza A (H1N1) infection in pulmonary aspergillosis, successfully treated with antifungal therapy, oseltamivir, and extracorporeal membrane oxygenation.
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J. Pediatr. Hematol. Oncol. · Oct 2011
The National Palliative Care Research Center and the Center to Advance Palliative Care: a partnership to improve care for persons with serious illness and their families.
The elimination of suffering and the cure of disease are the fundamental goals of medicine. While medical advances have transformed previously fatal conditions such as cancer and heart disease into illnesses that people can live with for many years, they have not been accompanied by corresponding improvements in the quality of life for these patients and their families. Living with a serious illness should not mean living in pain or experiencing symptoms like shortness of breath, nausea, or fatigue. ⋯ S. healthcare landscape. Specifically, persons facing serious illness and their families must know to request palliative care, medical professionals must have the knowledge and skills to provide palliative care, and hospitals and other healthcare institutions must be equipped to deliver and support palliative care services. The Center to Advance Palliative Care (CAPC) and the National Palliative Care Research Center (NPCRC) are accomplishing this three-part mission by working in partnership to: 1) Develop research to serve as the knowledge base for quality clinical care and the foundation on which to build palliative care programs and systems; 2) Disseminate this knowledge to patients, families, professionals, and institutions throughout the United States and ensure that it is integrated within mainstream healthcare; and 3) Influence and collaborate with policy makers , regulatory bodies, and federal funding agencies to ensure that the healthcare infrastructure supports the continued growth and development of palliative care.
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It is undeniable that there are barriers to providing palliative care. Recent research suggests there is value in palliative care for patients, families, and those providing this care. ⋯ First, this article will look at some of the barriers that sometimes prevent offering adequate palliative care to patient and families when the care is needed most. Second, this article will present results in a simplistic manner from actual research studies, which helps make the case through evidence of the value of palliative and quality end of life care.