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      Practical considerations when providing palliative care to patients with neuroendocrine tumors in the context of routine disease management or hospice care

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          Abstract

          This serves as a white paper by the North American Neuroendocrine Tumor Society (NANETS) on the practical considerations when providing palliative care to patients with neuroendocrine tumors in the context of routine disease management or hospice care. The authors involved in the development of this manuscript represent a multidisciplinary team of patient advocacy, palliative care, and hospice care practitioners, endocrinologist, and oncologists who performed a literature review and provided expert opinion on a series of questions often asked by our patients and patient caregivers affected by this disease. We hope this document serves as a starting point for oncologists, palliative care teams, hospice medical teams, insurers, drug manufacturers, caregivers, and patients to have a frank, well-informed discussion of what a patient needs to maximize the quality of life during a routine, disease-directed care as well as at the end-of-life.

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          Most cited references69

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          Trends in the Incidence, Prevalence, and Survival Outcomes in Patients With Neuroendocrine Tumors in the United States.

          The incidence and prevalence of neuroendocrine tumors (NETs) are thought to be rising, but updated epidemiologic data are lacking.
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            Early palliative care for patients with metastatic non-small-cell lung cancer.

            Patients with metastatic non-small-cell lung cancer have a substantial symptom burden and may receive aggressive care at the end of life. We examined the effect of introducing palliative care early after diagnosis on patient-reported outcomes and end-of-life care among ambulatory patients with newly diagnosed disease. We randomly assigned patients with newly diagnosed metastatic non-small-cell lung cancer to receive either early palliative care integrated with standard oncologic care or standard oncologic care alone. Quality of life and mood were assessed at baseline and at 12 weeks with the use of the Functional Assessment of Cancer Therapy-Lung (FACT-L) scale and the Hospital Anxiety and Depression Scale, respectively. The primary outcome was the change in the quality of life at 12 weeks. Data on end-of-life care were collected from electronic medical records. Of the 151 patients who underwent randomization, 27 died by 12 weeks and 107 (86% of the remaining patients) completed assessments. Patients assigned to early palliative care had a better quality of life than did patients assigned to standard care (mean score on the FACT-L scale [in which scores range from 0 to 136, with higher scores indicating better quality of life], 98.0 vs. 91.5; P=0.03). In addition, fewer patients in the palliative care group than in the standard care group had depressive symptoms (16% vs. 38%, P=0.01). Despite the fact that fewer patients in the early palliative care group than in the standard care group received aggressive end-of-life care (33% vs. 54%, P=0.05), median survival was longer among patients receiving early palliative care (11.6 months vs. 8.9 months, P=0.02). Among patients with metastatic non-small-cell lung cancer, early palliative care led to significant improvements in both quality of life and mood. As compared with patients receiving standard care, patients receiving early palliative care had less aggressive care at the end of life but longer survival. (Funded by an American Society of Clinical Oncology Career Development Award and philanthropic gifts; ClinicalTrials.gov number, NCT01038271.)
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              Lanreotide in metastatic enteropancreatic neuroendocrine tumors.

              Somatostatin analogues are commonly used to treat symptoms associated with hormone hypersecretion in neuroendocrine tumors; however, data on their antitumor effects are limited. We conducted a randomized, double-blind, placebo-controlled, multinational study of the somatostatin analogue lanreotide in patients with advanced, well-differentiated or moderately differentiated, nonfunctioning, somatostatin receptor-positive neuroendocrine tumors of grade 1 or 2 (a tumor proliferation index [on staining for the Ki-67 antigen] of <10%) and documented disease-progression status. The tumors originated in the pancreas, midgut, or hindgut or were of unknown origin. Patients were randomly assigned to receive an extended-release aqueous-gel formulation of lanreotide (Autogel [known in the United States as Depot], Ipsen) at a dose of 120 mg (101 patients) or placebo (103 patients) once every 28 days for 96 weeks. The primary end point was progression-free survival, defined as the time to disease progression (according to the Response Evaluation Criteria in Solid Tumors, version 1.0) or death. Secondary end points included overall survival, quality of life (assessed with the European Organization for Research and Treatment of Cancer questionnaires QLQ-C30 and QLQ-GI.NET21), and safety. Most patients (96%) had no tumor progression in the 3 to 6 months before randomization, and 33% had hepatic tumor volumes greater than 25%. Lanreotide, as compared with placebo, was associated with significantly prolonged progression-free survival (median not reached vs. median of 18.0 months, P<0.001 by the stratified log-rank test; hazard ratio for progression or death, 0.47; 95% confidence interval [CI], 0.30 to 0.73). The estimated rates of progression-free survival at 24 months were 65.1% (95% CI, 54.0 to 74.1) in the lanreotide group and 33.0% (95% CI, 23.0 to 43.3) in the placebo group. The therapeutic effect in predefined subgroups was generally consistent with that in the overall population, with the exception of small subgroups in which confidence intervals were wide. There were no significant between-group differences in quality of life or overall survival. The most common treatment-related adverse event was diarrhea (in 26% of the patients in the lanreotide group and 9% of those in the placebo group). Lanreotide was associated with significantly prolonged progression-free survival among patients with metastatic enteropancreatic neuroendocrine tumors of grade 1 or 2 (Ki-67 <10%). (Funded by Ipsen; CLARINET ClinicalTrials.gov number, NCT00353496; EudraCT 2005-004904-35.).

                Author and article information

                Journal
                Endocr Relat Cancer
                Endocr Relat Cancer
                ERC
                Endocrine-Related Cancer
                Bioscientifica Ltd (Bristol )
                1351-0088
                1479-6821
                20 March 2023
                05 April 2023
                01 July 2023
                : 30
                : 7
                : e220226
                Affiliations
                [1 ]Developmental Therapeutics Branch , National Cancer Institute, National Institutes of Health, Bethesda, USA
                [2 ]NorCal CarciNET Community , Oakland, California, USA
                [3 ]Department of Internal Medicine , Division of Palliative Medicine, University of California, San Francisco, San Francisco, California, USA
                [4 ]Harvard Medical School , Program in Carcinoid and Neuroendocrine Tumors, Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA
                [5 ]Good Shepherd Community Care , Harvard Kennedy School, Natick, Massachusetts, USA
                [6 ]Providence Cancer Institute Franz Clinic , Portland Providence Medical Center, Portland, Oregon, USA
                [7 ]Department of Surgery , Section of General Surgery, University of Calgary, Cumming School of Medicine, Calgary, Canada
                [8 ]Department of Internal Medicine , Division of Geriatrics and Palliative Medicine, Alpert Medical School, Providence, Rhode Island, USA
                [9 ]Odette Cancer Centre , Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada
                [10 ]Department of Medicine , Division of Endocrinology, Metabolism and Diabetes, Department of Biomedical Informatics, University of Colorado School of Medicine, Aurora, Colorado, USA
                Author notes
                Correspondence should be addressed to J Del Rivero: jaydira.delrivero@ 123456nih.gov

                *(J Del Rivero and J Mailman contributed equally to this work)

                Author information
                http://orcid.org/0000-0001-9710-4030
                http://orcid.org/0000-0002-8151-5107
                Article
                ERC-22-0226
                10.1530/ERC-22-0226
                10326633
                37017232
                0388859b-c32b-495e-b188-1df9534c05a3
                © NANETS

                This work is licensed under a Creative Commons Attribution 4.0 International License.

                History
                : 20 February 2023
                : 20 March 2023
                Categories
                Guidelines and Guidance

                Oncology & Radiotherapy
                neuroendocrine tumors,palliative care,hospice care,end of life,management
                Oncology & Radiotherapy
                neuroendocrine tumors, palliative care, hospice care, end of life, management

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