Journal of pain and symptom management
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The concept of "ubuntu," a Nguni word, is found in many southern African cultures and means that we are part of all humanity and we are who we are through our interconnectedness with others. Children with life-limiting conditions often become isolated and take on a new identity in the eyes of others, linked to their illness and treatment. ⋯ The concept of ubuntu can help the child, the family, and the community to ensure the child remains connected to society. Programs providing palliative care for children often say they feel isolated; ubuntu principles are relevant to effective network development.
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J Pain Symptom Manage · Sep 2015
Implementation of HIV Palliative Care: Interprofessional Education to Improve Patient Outcomes in Resource-Constrained Settings, 2004-2012.
Palliative care (PC), introduced early in the management of chronic illness, improves patient outcomes. Early integration of a palliative approach for persons with HIV has been documented to be effective in identifying and managing patient-level concerns over the past decade in African settings. The experience of implementing PC in multiple African and other resource-constrained settings (RCSs) emphasizes the need for essential palliative competencies that can be integrated with chronic disease management for patients and their families facing life-limiting illness. ⋯ S. city and may represent a mechanism for expanding the palliative approach into management of chronic disease. Such competencies may play a role in the development of the patient-centered medical home, a critical component of U. S. health care reform.
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J Pain Symptom Manage · Sep 2015
Patient-Reported Outcomes for Determining Prognostic Groups in Veterans with Advanced Cancer.
Physicians overestimate survival in patients with advanced cancer. Patient-reported outcomes could provide another way to estimate survival. We previously reported four prognostic groups based on Karnofsky Performance Status, Functional Assessment of Cancer Therapy physical well-being subscale, and Memorial Symptom Assessment Scale-Short Form physical symptom distress subscale scores. ⋯ The four prognostic groups remained distinct in the prospective cohort. Small differences in patient-reported physical well-being can halve survival estimates. Patient-reported outcomes can correct for physician overestimate of prognosis. This study provides a way to use patient-reported outcomes for prognosis in patients with advanced cancer, with important implications for assessment.
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J Pain Symptom Manage · Sep 2015
Assessing the Quality of Death and Dying in an Integrated Health Care System in Rural Pennsylvania.
With growing emphasis on improving the value of health care, there is increased scrutiny of quality outcomes and high health expenditures during the final months of life. ⋯ Several findings suggest that factors such as NOK depression and anxiety, prolonged illness, dying in the hospital, receipt of conflicting information, and confusion around the doctor in charge are associated with lower quality of the dying and death experience for NOK. Further investigation is warranted to facilitate high-quality measurement and the use of measurement results to improve care.
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J Pain Symptom Manage · Sep 2015
Randomized Controlled TrialThe Effect of Methylphenidate on Fatigue in Advanced Cancer: An Aggregated N-of-1 Trial.
Fatigue is common in life-limiting cancer. Methylphenidate (MPH), a psychostimulant, may be a useful therapy. Gathering evidence in patients with advanced cancer can be challenging. ⋯ MPH does not improve fatigue in the population of patients with end-stage cancer. Aggregated N-of-1 trial methodology is feasible and produces population-based sample estimates with less than half the sample size required for the equivalent parallel-group RCT. It also identified individuals who did and did not respond to MPH, which is a feature difficult to achieve in a standard RCT. The study was registered with the Australian Clinical Trials Registry (12609000794202).