Journal of palliative medicine
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Background: Navigating pediatric advanced cancer is challenging for children and parents, resulting in increased risk for psychological distress. While research has explored parent worries/concerns, few studies have included children's perspectives. Objectives: To explore worries/concerns in children with advanced cancer and their parents. ⋯ Quantitatively, parents similarly identified worries about prognosis and symptom burden but also endorsed concern about being unable to help their child feel better. Conclusions: Our findings highlight similarities and differences in worries/concerns among children and parents as they navigate a child's advanced cancer journey. Early integration of palliative care may be helpful in mitigating these issues.
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Background: Population-based methods to identify patients with serious illness are necessary to provide equitable and efficient access to palliative care services. Aim: Create a validated algorithm embedded in the electronic medical record (EMR) to identify hospitalized patients with serious illness. Design: An initial algorithm, developed from literature review and clinical experience, was twice adjusted based on gaps identified from chart review. ⋯ Results: Compared with the gold standard of expert consensus, the final algorithm for identifying hospitalized patients with serious illness was found to have a sensitivity of 89%, specificity of 82%, positive predictive value of 80%, and negative predictive value of 90%. At our hospital, an average of 284 patients a day (54%) screened positive for at least one criterion, with an average of 38 patients newly screening positive daily. Conclusions: Data from the EMR can identify hospitalized patients with serious illness who may benefit from palliative care services, an important first step in moving to a system in which palliative care is provided proactively and systematically to all who could benefit.
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Background: This analysis examined regret from participation in cancer clinical trials (CCT) and explored associations between regret and symptom burden, symptom bother, therapeutic optimism, and the importance of spiritual beliefs. Methods: This is a secondary analysis of cross-sectional data from a study of American CCT patient-participants conducted from 2015 to 2019. Descriptive statistics, bivariate associations, and logistic regression were used to evaluate regret in this sample (n = 325). ⋯ The final regression model identified that younger age, symptom burden, and therapeutic optimism significantly predicted regret (p < 0.05). Conclusions: Understanding regret among research participants may improve CCT retention and ensure ethical research practices. Symptom experiences may play a key role in experiences of regret in CCT participation.
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Introduction: Sexual and gender minority (SGM) individuals face increased risk of receiving suboptimal care, including palliative care. Despite research demonstrating strategies to improve care, little is known about the experiences of palliative care clinicians providing care to these communities. Objectives: The primary aim of this study is to characterize attitudes and practices of palliative care physicians around providing care to SGM individuals. ⋯ Results: Four main themes represent perspectives on improving palliative care for SGM individuals: (1) increasing experience with and knowledge about SGM communities increases clinicians' confidence and competency; (2) standardizing inclusive sexual orientation and gender identity (SOGI) data collection and documentation can improve patient care; (3) addressing individual, systemic, and societal biases may improve palliative care provided to SGM individuals; and (4) knowing SOGI improves care quality. Conclusions: Clinicians must familiarize themselves with the importance of SOGI to the care provided as well as the palliative care needs of SGM communities. Institutions should provide tailored training around the unique needs of SGM patients and implement policies and tools that standardize sexual and gender orientation data collection and documentation.