Journal of palliative medicine
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Background: Intellectual and Developmental Disabilities (IDD) are defined as physical/mental impairments before age 18. Not only are many IDD patients living into adulthood, but deinstitutionalization has also led to most living in community settings. Little is known about end-of-life needs in these adults, and existing literature does not examine attitudes of Canadian providers. Objective: Thematic and content analysis examined attitudes of Canadian Pediatric Palliative Care (PPC) practitioners on caring for adults with IDD to identify components of care, which could be improved. Design: An anonymized survey was created (Surveymonkey.com) using open-ended and Likert-scale questions, with thematic/subthematic coding on NVivo11. ⋯ Knowledge ratings of adult palliative care and generalist practitioners by respondents were evenly distributed, but only pediatricians gave ratings of poor or worse. PPC practitioners are comfortable being consulted by adult palliative care and generalist colleagues. However, frequency of consults varied dramatically, from one to two times/month in British Columbia to never. Conclusions: PPC practitioners across Canada identified several major issues and barriers to optimal palliative care for adults with IDD.
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Meta Analysis
Role of Arts Therapy in Patients with Breast and Gynecological Cancers: A Systematic Review and Meta-Analysis.
Background: Women with breast and gynecological cancers often experience adverse symptoms such as anxiety, depression, pain, and fatigue. Objective: The purpose of this meta-analysis was to clarify the role of arts therapy (based on music, painting, and dance) in quality of life and reported symptoms among women with breast and gynecological cancers. Methods: Articles on arts therapy were retrieved from relevant electronic databases through to May 2020. The outcomes (quality of life and symptoms such as anxiety, depression, pain, and fatigue) were estimated according to standard or validated scales that assessed psychological status and activities of daily living. The effect sizes for arts therapy were combined to show the standardized mean difference (SMD) and corresponding confidence interval (CI), and a random-effects model was used for computation. Results: In total, 19 randomized controlled studies were included in this meta-analysis. ⋯ However, the summary SMDs for arts therapy was not significant for sleep disturbance, anger, vigor, tension, confusion, and stress. Conclusion: This meta-analysis shows that arts therapy has favorable effects on improving quality of life and depression among patients with breast and gynecological cancers. Arts therapy also has positive effects on improving anxiety, pain, and fatigue symptoms among patients with breast cancer. Further studies are required to confirm the effect of arts therapy on anxiety, pain, and fatigue in patients with gynecological cancer.
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Background: Integrated pediatric palliative oncology (PPO) outpatient models are emerging to assist oncologists, children, and families throughout their course with cancer. Significant time is devoted to care coordination ("nonbillable" time), but the scope, time per patient, and ratio of nonbillable to billable (NB:B) minutes are unknown. This information is crucial to designing new PPO outpatient clinics and advocating for appropriate personnel, physician time, and resources. ⋯ Deceased patients had a higher ratio of NB:B minutes than alive patients (1.9 vs. 0.8, p = 0.012). Billable and nonbillable minutes both increased over time. Conclusions: Care coordination in a PPO clinic is time intensive and grows with clinic volume. When devising a PPO outpatient program, this NB:B ratio should be accounted for in clinician time and personnel devoted to patient and family assistance.
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Randomized Controlled Trial
The Development of the Australian National Palliative Care Clinical Studies Collaborative "Integrating Qualitative Research into Clinical Trials Framework".
Qualitative methodologies have multiple contributions to health research, including improving baseline understanding in new areas of enquiry; questioning existing assumptions; understanding viewpoints of specific subgroups; and offering complex, contextual information. While the role of qualitative research within mixed methods approaches is well documented, the contribution to clinical trial design and conduct is less well recognized. ⋯ This practical framework provides real-world examples, including sample qualitative questions, to consider at each phase of controlled clinical trial development. As the number of randomized clinical trials in palliative care increases, a readily accessible approach to integrating qualitative research into clinical trial design and conduct is needed so that its full potential for improving study recruitment, conduct, outcomes, interpretation, and implementation may be realized.
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Over 140,000 people in the United States have died as a result of infection with COVID-19. These patients have varying death experiences based on their location of death, the availability and utilization of various medical technologies, the amount of strain on the local health care system, the involvement of specialist palliative care (PC) teams, and access to essential medications to alleviate symptoms at the end of life. The objective of this report is to describe the death experiences of four patients cared for in an urban academic medical center who received very different degrees of medical interventions and to examine the interventions of our interdisciplinary PC team. We conclude that PC teams must adapt to this new landscape by creating best practices for ensuring adequate symptom control, modifying approaches for withdrawal of life-sustaining medical technologies, and gaining facility with communication through teleconferencing platforms to meet the challenge of alleviating suffering for people dying from COVID-19.