Prevalence of palliative care consultations in phase I pediatric oncology trials.

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 108-108
Author(s):  
Andrea Joan Cuviello ◽  
Andrea Beri ◽  
Renee D Boss ◽  
Nirali N. Shah ◽  
Brigitte C. Widemann ◽  
...  

108 Background: In 2015 the Psychosocial Standards of Care Project for Childhood Cancer published 15 evidence-based standards for pediatric psychosocial care for children with cancer and their families. One standard endorses incorporation of palliative care to “reduce suffering throughout the disease process, regardless of disease status”. Patients enrolling on phase I studies represent a unique cohort within pediatric oncology, as they generally represent a patient population that has not responded to standard therapies and a chance of cure is limited. Phase I trials, primarily designed to test safety and feasibility, offer a low chance of therapeutic benefit and high risk of death. This study aims to define the prevalence of palliative medicine consultation for phase I patients. Methods: A retrospective chart review of pediatric patients enrolled in a National Cancer Institute (NCI) Pediatric Oncology Branch Phase I clinical trial between 2015-present, using the NIH Biomedical Translational Research Information System (BTRIS). Palliative Care Consult Notes, Advance Directive information, diagnoses and medications were captured. Results: We reviewed the records of 126 phase I patients; 66% were male, 47% were >18 years, 67% had relapsed/refractory leukemia, and 46% are now recorded as deceased. Palliative medicine was consulted in <20% of patients; all consultations were for symptom management, primarily pain control (91%). Only 9% of patients had an advance directive prior to enrollment at the NCI. During therapy at the NCI, an additional 20% of patients completed an advance directive, just over a third (35%) of which were patients who received palliative medicine consultation. Conclusions: Palliative care was infrequently consulted in a highly vulnerable patient population where survival outcomes are poor and disease or therapy side effects are substantial. Efforts to increase the use of palliative care services in this population may improve the quality of life for children and families. Future directions include working to standardize the involvement of palliative medicine for pediatric patients enrolling onto phase I clinical trials.

2019 ◽  
Vol 66 (8) ◽  
Author(s):  
Andrea Cuviello ◽  
Renee Boss ◽  
Nirali Shah ◽  
Haven Battles ◽  
Andrea Beri ◽  
...  

2014 ◽  
Author(s):  
Margaux J. Barnes ◽  
Joseph Pressey ◽  
Julia Adams ◽  
Molly A. Hensler ◽  
Avi Madan-Swain

2020 ◽  
Vol 37 (8) ◽  
pp. 589-593 ◽  
Author(s):  
Bridget H. Highet ◽  
Elizabeth R. Lesser ◽  
Patrick W. Johnson ◽  
Judith S. Kaur

Background: Palliative medicine physicians are challenged by lack of guidance regarding effectiveness and dosing of cannabis products in the setting of their emerging popularity. Objective: The aim of this study was to describe early patterns of tetrahydrocannabinol (THC) and cannabidiol (CBD) use in Florida following passage of the state’s first medical marijuana law. We describe here the perceived benefits, side effects, and beliefs expressed by patients in a single outpatient academic palliative medicine practice. Methods: A cross-sectional survey was performed of a sequential convenience sample of patients who presented to an outpatient academic palliative medicine clinic over a 3-month period. Results: In all, 24% (14/58) of respondents reported THC use, with half using THC on a daily basis. Patients reported improvements in pain, appetite, and nausea. In all, 71% (10/14) began using THC after the diagnosis of their chronic illness, and the most common form of usage was vaping. In all, 24% (14/58) of patients reported CBD use. Patients reported improvements in pain, and the most common form of usage was topical application. None of the patients had used CBD prior to the onset of their chronic illness. In all, 21% (3/14) of THC users and 21% (3/14) of CBD users thought that their substance was helping to cure their illness. Individual reported side effects in both groups were minimal. Conclusions: Approximately a quarter of outpatient palliative care patients use THC or CBD, often on a daily basis. Palliative care providers should be aware of the frequency, diverse usage, and beliefs behind cannabis product use in this patient population.


2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 12001-12001
Author(s):  
Thomas J. Smith ◽  
Vincent Chung ◽  
Mark T. Hughes ◽  
Marianna Koczywas ◽  
Nilofer Saba Azad ◽  
...  

12001 Background: The purpose of this study was to test a Palliative Care Intervention for patients with solid tumors enrolled in phase I therapeutic trials. Methods: This randomized trial compared patients accrued to phase I Clinical Trials in groups of Usual Care compared to a Palliative Care Intervention (PCI) in two comprehensive cancer centers. The PCI included assessment of quality of life (QOL) and symptoms, an interdisciplinary meeting to discuss the care plan, including goals of care, and two nurse-delivered teaching sessions. Subjects (n=479) were followed for 24 weeks, with 12 weeks as the primary outcome point. Results: Outcomes revealed that relative to Usual Care, PCI subjects showed less Psychological Distress (1.9 in Intervention and 1.2 in Control pts, p=0.03) and a trend toward improved QOL (3.7 versus 1.6, p=0.07), with differences between sites. We observed high rates of symptom-management admissions (41.3%) and low rates of Advance Directive completion (39%), and use of supportive care services including hospice (30.7%, for only1.2 months duration), despite a median survival for all patients in both groups of 10.1 months from initiating a phase 1 study until death. Patient satisfaction with oncology care was already high at baseline, and we did not see clinically significant changes in those scores by week 12. Conclusions: Palliative care interventions can improve QOL outcomes and distress for patients participating in phase 1 trials. Greater integration of PC is needed to provide quality care to these patients and to support transitions from treatment to supportive care, especially at the end of life. Clinical trial information: NCT01828775 .


2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 75-75
Author(s):  
Marisa R Moroney ◽  
Breana Hill ◽  
Jeanelle Sheeder ◽  
Jennifer Robinson Diamond ◽  
Melony Avella-Howell ◽  
...  

75 Background: ASCO guidelines recommend patients with advanced cancer receive early integrated specialty palliative care based on evidence of multiple clinical benefits. To our knowledge, there is no literature evaluating utilization of specialty palliative care in Phase I clinical trial patients, but there is limited data demonstrating underutilization of palliative care services in patients with life-threatening diseases including advanced cancer. Methods: A retrospective review of ovarian cancer patients enrolled in Phase I clinical trials at one institution from 2008 to 2018. Charts were reviewed for patient and disease characteristics including age, disease stage, number of chemotherapy regimens and date of death. Charts were also reviewed to determine if and when patients received specialty palliative care services. Results: A total of 121 patients with ovarian cancer were enrolled in Phase I clinical trials. Median age at time of Phase I enrollment was 59 years (range 33-88). 87% of patients had advanced stage disease: 60% Stage III and 27% Stage IV. Median number of chemotherapy regimens received prior to Phase I enrollment was 5 (range 1-13). Median survival was 311 days (95%CI 225.9-396.1). Of the 121 patients, 4 (3.3%) received specialty palliative care prior to Phase I enrollment, 7 (5.8%) within 30 days after enrollment, and 53 (43.8%) more than 30 days after enrollment. 57 patients (47.1%) never received specialty palliative care. Conclusions: Ovarian cancer patients enrolled in Phase I clinical trials have advanced cancer – defined by ASCO as disease that is late-stage and life limiting with a prognosis less than 24 months – and should therefore receive early integrated specialty palliative care. This study demonstrates that a significant portion of Phase I ovarian cancer patients are either receiving no or late integration of specialty palliative care. Further work needs to focus on increasing early integration of specialty palliative care in this population.


2021 ◽  
Vol 5 (3) ◽  
pp. 91-94
Author(s):  
Joana Muniz Mendonça ◽  
Luana Luzia de Assis Arruda Corbari ◽  
Matheus Mychael Mazzaro Conchy ◽  
Renan da Silva Bentes

This research has as general theme "Nursing care in palliative care in pediatric oncology", an approach that needs to be further discussed due to the need to prepare nursing professionals working in the pediatric sector with cancer patients who are terminally. Thus, an informative text was produced with information based on authors who have already conducted research on this theme, with a qualitative approach, because this is a Bibliographic research. To guide this research, the general objective was to identify the knowledge and reactions of nursing professionals in pediatric cancer care and as specific objectives to identify the perceptions and feelings that permeate pediatric nursing practice in relation to cancer, treatment, and its implications and to know the care/care activities aimed at children hospitalized in the pediatric oncology sector. It is concluded that the courses directed to nursing need to offer disciplines that prepare these professionals to deal with pediatric patients who are in terminal state, preparing them to comfort the family in the face of the failure of the treatments that the patient underwent.


This chapter describes the emergence of the field of paediatric palliative care. It looks at the differences between children’s palliative care and the adult world. It goes on to discuss the management of various symptoms looking particularly at the pharmacological approaches that can be used. All dosages are aligned with the Association of Paediatric Palliative Medicine formulary guidelines. Advances in the treatment of life-threatening neonatal and paediatric conditions have dramatically improved survival rates over recent years. One of the most striking reductions in mortality has been achieved for children with malignant conditions, although there remain certain forms of cancer for which the prognosis remains extremely poor. Similarly, despite advances, there is a range of non-malignant conditions which continue to be life-limiting. The patient population in paediatric palliative care is quite different from that encountered in adult practice. Approximately 25–30% of children with palliative care needs have a malignancy.


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