Journal of palliative medicine
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The palliative care field is experiencing substantive growth in clinical trial-based research. Randomized controlled trials provide the necessary rigor and conditions for assessing a treatment's efficacy in a controlled population. It is therefore important that a trial is meticulously designed from the outset to ensure the integrity of the ultimate results. ⋯ These ten tips cover a range of topics that can prove challenging in trial design, from developing initial methodologies to planning sample size and powering the trial, as well as collaboratively navigating the ethical issues of trial initiation and implementation as a cohesive team. We aim to help new researchers design sound trials and continue to grow the evidence base for our specialty. The guidance provided here can be used independently or in addition to the ten tips provided by this team in a separate article focused on what palliative care clinicians should know about interpreting a clinical trial.
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Background: Some commentators and several professional medical associations have expressed concern that legalizing medical aid in dying ("MAID") will undermine patient trust in the medical profession, particularly among historically disadvantaged patient populations. While this concern remains influential, it has been subject to limited empirical scrutiny. Objectives: This study aims to empirically assess whether MAID legalization undermines patient trust, with considerations of potential trust/demographic correlations in marginalized and minority patient populations. ⋯ Conclusions: Most of the participants not notified that MAID was legal in DC were not aware of this fact (92.5%). Patients who were notified that MAID was legal in DC were significantly more likely to report approval of MAID legalization (p = 0.0410), but showed no significant difference in AWFS score for trust in their physicians. The study did not substantiate concerns that legalizing medical aid in dying undermines patient trust in the medical profession.
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Context: As pediatric palliative care (PPC) expands within institutions and nationally, little guidance is available on building outpatient programs. Objectives: We asked outpatient PPC (OPPC) program leaders in the United States about clinic development experiences to gather advice for growing programs. Methods: As part of a larger OPPC study, 48 freestanding children's hospitals with inpatient PPC programs were invited to complete a survey on OPPC. ⋯ Participants focused advice on slow programmatic growth to optimize sustainability. Conclusion: Program leaders offer tangible guidance informed by their OPPC development experience. Future work is needed to leverage this advice within institutions to promote resilient and sustainable PPC growth.
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Myeloproliferative neoplasms (MPNs) are a group of rare chronic progressive blood cancers that vary widely in clinical presentation, yet all patients have a risk of disease progression and thrombotic complications. Diseases include primary myelofibrosis, polycythemia vera, and essential thrombocythemia. ⋯ Although significant advances have been made in preventing arterial and venous complications while mitigating inflammatory processes, comprehensive palliative care can help address unmet complex physical and psychosocial needs on a long-term basis. This article, created by a multidisciplinary group of providers, offers an overview of MPNs so palliative care clinicians can better support patients with these hematologic cancers.
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Background: Loneliness and social isolation coexist, making it difficult to study each separately. The COVID-19 lockdown provided an unprecedented and ethically viable opportunity to study loneliness in seriously ill nursing home residents under uniformly imposed social isolation conditions. Objective: To understand the phenomenon of loneliness of the seriously ill nursing home patients under a uniform social isolation condition imposed by the COVID-19 pandemic lockdown. ⋯ Participants in the last year of life also reported higher levels of loneliness. Conclusion: A study of loneliness under uniform social isolation conditions in seriously ill nursing home patients showed a high prevalence of loneliness and a strong correlation between self-reported loneliness and social isolation, especially in persons from minority communities and those in the last year of life. In-person support provided by nursing home staff and virtual support from family was helpful to patients.