Journal of palliative medicine
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Background: Within palliative care research, best practice guidelines to conduct scientifically rigorous clinical trials for neurodegenerative diseases are underexplored. This patient population experiences unique challenges, including fluctuations in cognitive capacity, care partner (CP) and proxy involvement, and high adverse events (AEs), that necessitate special consideration when designing clinical trials. Objective: The objective of this study was to describe and identify clinical trial design features that have been documented in studies involving a neuropalliative intervention for persons with neurodegenerative diseases, highlighting features that have been adapted for this unique patient population. ⋯ Conclusions: To date, neuropalliative care clinical trials have had varied study designs and the majority of research has focused on dementia. Research guideline development for high-quality neuropalliative care clinical trials is greatly needed across the range of neurodegenerative diseases. To increase the scientific rigor of clinical trials and neuropalliative care, we recommend a standardized capacity assessment for consent, defining conditions for the CP, proxy, and AEs, systematizing appropriate comparators, and outlining preemptive recruitment and retention strategies to address the broader unpredictable challenges of palliative care research.
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Background: Patients with life-limiting illnesses receiving palliative care have a high symptom burden that can be challenging to manage. Guided imagery (GI), a complementary and integrative therapy in which patients are induced to picture mental images with sensory components, has proven in quasi-experimental studies to be effective as a complementary therapy for symptom management. Objective: To systematically review randomized controlled trials that report evidence of guided imagery for symptom management in patients with life-limiting illnesses. ⋯ GI was found to be effective in managing symptoms in 10 out of the 14 studies. Regardless of the disease stage, patients who received guided imagery experienced relief from anxiety, depression, pain, sleep disturbances, and fatigue. Conclusion: GI therapy has shown promising results regarding symptom management in palliative care patients with life-limiting illnesses at different stages.
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Background: Acute leukemia is a cancer of the blood and bone marrow with a high symptom burden and a high mortality rate in adults. The quality of end-of-life care among this patient population is deemed to be low based on health care administrative data, though the patient experience is not included in this evaluation. Objective: This scoping review aims at exploring and mapping the current research literature on the experience of care among adults with incurable acute leukemia near the end of life. ⋯ The medicalization of end-of-life care, including intensive care unit admissions and invasive medical procedures, were viewed as the norm by some providers, though perceived as distressing for both patients and their loved ones. Conclusions: Adults with acute leukemia face significant challenges in accessing high-quality end-of-life care brought about by the complex nature of their disease and its treatment. A systematic exploration of the end-of-life experience among these patients through direct patient engagement or by way of patient reporting proxies is needed.