Comparison of Health-Related Quality of Life in Patients With Neuroendocrine Tumors With Quality of Life in the General US Population

Beaumont, Jennifer L.; Cella, David; Phan, Alexandria T.; Choi, Seung Wook; Liu, Zhimei; Yao, James C.

doi:10.1097/mpa.0b013e3182328045

Cited by 158 publications

(143 citation statements)

References 22 publications

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“…15 Debulking up to 90% of tumour burden, even with positive margins, has been shown to be beneficial for symptom relief. 6 In the present study, 9 patients were identified who did not meet criteria for standard resections owing to the diffuse nature of their liver metastases but who were increasingly symptomatic, despite systemic therapies, secondary to their disease burden.…”

Section: Discussionmentioning

confidence: 99%

Hepatic parenchymal preserving technique in the management of diffuse bilateral neuroendocrine tumour liver metastases: a feasible approach

Nadler

Cukier

Milot

et al. 2014

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Background: Aggressive surgical resection of neuroendocrine tumour liver metastases (NET-LM) is associated with symptomatic relief. Debulking up to 90% of tumour burden, even with positive margins, may be beneficial. However, patients with diffuse hepatic metastases may not qualify for resection owing to associated insufficient remnant liver parenchyma. The purpose of this study is to describe an early experience with a hepatic parenchymal preserving (HPP) approach. Methods:We retrospectively reviewed our institutional neuroendocrine tumours database to identify patients with NET-LM, including symptomatic patients with extensive bilobar involvement, who underwent virtual volumetric assessment (VVA) combined with HPP resection between October 2008 and July 2011.Results: Our study involved 9 patients. The median number of liver metastases resected was 10 (range 4-50). Symptomatic improvement was observed in all patients. Immediate postoperative normalization of 5-HIAA 24-hour urine levels occurred in 89% of patients. Symptomatic and biochemical response remained stable or improved in 75% of patients at 12 months of follow-up. Four patients had postoperative complications. There was no 90-day mortality. Conclusion:The described HPP approach is feasible and safe. Most patients experienced symptomatic and biochemical improvement. This reproducible approach could expand surgical resection options for patients with NET-LM and diffuse bilobar involvement.Contexte : La résection chirurgicale radicale des métastases hépatiques des tumeurs neuroendocrines procure un soulagement des symptômes. La résection d'une portion du fardeau tumoral allant jusqu'à 90 %, même en présence de marges positives, peut être bénéfique. Toutefois, les patients porteurs de métastases hépatiques diffuses ne seront pas toujours de bons candidats à la résection parce que leur parenchyme hépa-tique résiduel ne sera pas suffisant. Le but de cette étude est de décrire une première expérience avec une approche de préservation du parenchyme hépatique (PPH).Méthodes : Nous avons passé en revue de manière rétrospective la base de données de notre établissement sur les tumeurs neuroendocrines afin de recenser les patients porteurs de métastases hépatiques, y compris les patients symptomatiques présentant une atteinte bilobaire importante qui ont subi une évaluation volumétrique virtuelle en lien avec une résection de type PPH entre octobre 2008 et juillet 2011.Résultats : Notre étude a regroupé 9 patients. Le nombre médian de métastases hépatiques réséquées a été de 10 (entre 4 et 50). On a observé une amélioration des symptômes chez tous les patients. Une normalisation postopératoire immédiate des taux urinaires de 5-HIAA sur 24 heures a été observée chez 89 % des patients. La réponse symptomatique et biochimique est demeurée stable ou s'était améliorée chez 75 % des patients au 12e mois de suivi. Quatre patients ont présenté des complications postopératoires. On n'a déploré aucun décès dans les 90 jours.Conclusion : L'approche par PPH décrite ici est fa...

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Section: Discussionmentioning

confidence: 99%

Hepatic parenchymal preserving technique in the management of diffuse bilateral neuroendocrine tumour liver metastases: a feasible approach

Nadler

Cukier

Milot

et al. 2014

cjs

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“…In addition to deployment with a representative sample of the U.S. population (Craig et al, 2014), the instrument has successfully measured HRQoL in chiropractic patients (Alcantara, Ohm, and Alcantara, 2016) and people with neuroendocrine tumors (Beaumont et al, 2012;Pearman et al, 2016), systemic sclerosis (Hinchcliff et al, 2011), irritable bowel syndrome (IsHak et al, 2017), rheumatoid arthritis and osteoarthritis (Katz, Pedro, and Michaud, 2017), systemic lupus erythematosus (Lai et al, 2017), and human immunodeficiency virus (HIV) (Schnall et al, 2017), among other populations. In prior testing, the PROMIS-29 has also been administered in a variety of settings (e.g., at the patient's home or in a medical clinic) and by a variety of methods (e.g., online or via paper and pencil).…”

Section: Previous Testing and Use Of The Patient-reported Outcomes Mementioning

confidence: 99%

“…The construct validity of the PROMIS-29 has already been extensively evaluated in many populations (Alcantara, Ohm, and Alcantara, 2016;Beaumont et al, 2012;Craig et al, 2014;Hinchcliff et al, 2011;IsHak et al, 2017;Katz, Pedro, and Michaud, 2017;Lai et al, 2017;Pearman et al, 2016;Schnall et al, 2017), but never in a population of such advanced age and high illness burden. We examined criterion validity for PROMIS-29 measures in two ways.…”

Section: Question 6: Do the Risk-adjusted Patient-reported Outcomes Mmentioning

confidence: 99%

Patient-Reported Outcome–Based Performance Measures for Older Adults with Multiple Chronic Conditions

Edelen¹,

Rose²,

Bayliss³

et al. 2017

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This document and trademark(s) contained herein are protected by law. This representation of RAND intellectual property is provided for noncommercial use only. Unauthorized posting of this publication online is prohibited. Permission is given to duplicate this document for personal use only, as long as it is unaltered and complete. Permission is required from RAND to reproduce, or reuse in another form, any of its research documents for commercial use. For information on reprint and linking permissions, please visit www.rand.org/pubs/permissions.The RAND Corporation is a research organization that develops solutions to public policy challenges to help make communities throughout the world safer and more secure, healthier and more prosperous. RAND is nonprofit, nonpartisan, and committed to the public interest.RAND's publications do not necessarily reflect the opinions of its research clients and sponsors.Support RAND Make a tax-deductible charitable contribution at www.rand.org/giving/contribute www.rand.org For more information on this publication, visit www.rand.org/t/RR2176This study was conducted in response to contract HHSN271201500064C NIH NIA (AG).Published by the RAND Corporation, Santa Monica, Calif. © Copyright 2017 RAND CorporationR® is a registered trademark.iii Preface Ensuring patients' survival and curing disease are no longer the sole goals of patient care; functional status and well-being must also be optimized. Standardized assessments through patient-reported outcome (PRO) performance measures (PMs) allow evaluators to see how well these aspects of care are being delivered and compare the performance of health care systems and different provider groups.To meaningfully assess health-related quality of life, PMs must align with patients' goals. Most PMs in current use assess technical quality of care, the benefit of which can take years to realize. These sorts of measures might not be particularly salient to older adults (especially age 80 and older) with multiple chronic conditions (MCC) because their expectations for long-term survival are limited. The desire of such patients to maximize quality of life for the remainder of their life spans is obviously undiminished. However, no PMs have been formally developed or validated for use in this population. Therefore, policymakers and researchers who focus on quality of health care are especially interested in developing PRObased PMs to measure the care delivered to older adults with MCC.This project aimed to address this gap in validated PRO-based PMs through the completion of two aims. The first aim was to determine whether the Patient-Reported Outcomes Measurement Information System 29-item (PROMIS-29) profile instrument is valid for use in this population. The second aim was to study how well PMs based on PROs, specifically the Veterans RAND 36 Item Health Survey (VR-36) and the PROMIS-29, measure functional status and well-being in the same population. This report summarizes our analyses and provides recommendations for future efforts to develo...

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“…34 Imaging involves one or a combination of modalities including computed tomography (CT), magnetic resonance imaging (MRI), endoscopic ultrasonography (EUS), and radiolabeled somatostatin analogue scintigraphy using 99 Tc-labeled or 111 In-pentetreoide ( 111 In-DTPApentetreotide; Octreoscan) and in those negative on Octreoscan, Expression and identification of somatostatin receptors subtype 2A (SST-2A) is particularly useful in guiding imaging and predicting response to treatment with somatostatin analogues or peptide-receptor radionuclide therapy (PRRT). 35 Positron emission tomography-computed tomography with 18 F-flurodeoxyglucose (FDG) imaging (PET-CT) is reserved for patients with undifferentiated and nonsecretory tumors due to their increased proliferative activity (Ki-67 index) or in patients with negative or equivocal imaging on 123 I-MIBG. 7,33 Endoscopic or percutaneous obtained biopsy is required for histopathology to confirm the diagnosis.…”

Section: Diagnosis and Treatmentmentioning

confidence: 99%

Flushing Disorders Associated with Gastrointestinal Symptoms: Part 1, Neuroendocrine Tumors, Mast Cell Disorders and Hyperbasophila

et al. 2018

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Flushing is the subjective sensation of warmth accompanied by visible cutaneous erythema occurring throughout the body with a predilection for the face, neck, pinnae, and upper trunk where the skin is thinnest and cutaneous vessels are superficially located and in greatest numbers. Flushing can be present in either a wet or dry form depending upon whether neural-mediated mechanisms are involved. Activation of the sympathetic nervous system results in wet flushing, accompanied by diaphoresis, due to concomitant stimulation of eccrine sweat glands. Wet flushing is caused by certain medications, panic disorder and paroxysmal extreme pain disorder (PEPD). Vasodilator mediated flushing due to the formation and release of a variety of biogenic amines, neuropeptides and phospholipid mediators such as histamine, serotonin and prostaglandins, respectively, typically presents as dry flushing where sweating is characteristically absent. Flushing occurring with neuroendocrine tumors accompanied by gastrointestinal symptoms is generally of the dry flushing variant, which may be an important clinical clue to the differential diagnosis. A number of primary diseases of the gastrointestinal tract cause flushing, and conversely extra-intestinal conditions are associated with flushing and gastrointestinal symptoms. Gastrointestinal findings vary and include one or more of the following non-specific symptoms such as abdominal pain, nausea, vomiting, diarrhea or constipation. The purpose of this review is to provide a focused comprehensive discussion on the presentation, pathophysiology, diagnostic evaluation and management of those diseases that arise from the gastrointestinal tract or other site that may cause gastrointestinal symptoms secondarily accompanied by flushing. This review is divided into two parts given the scope of conditions that cause flushing and affect the gastrointestinal tract: Part 1 covers neuroendocrine tumors (carcinoid, pheochromocytomas, vasoactive intestinal polypeptide, medullary carcinoma of the thyroid), polyneuropathy, organomegaly, endocrinopathy, monoclonal protein, skin changes (POEMS), and conditions involving mast cells and basophils; while Part 2 covers dumping syndrome, mesenteric traction syndrome, rosacea, hyperthyroidism and thyroid storm, anaphylaxis, panic disorders, paroxysmal extreme pain disorder, and food, alcohol and medications.

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Comparison of Health-Related Quality of Life in Patients With Neuroendocrine Tumors With Quality of Life in the General US Population

Cited by 158 publications

References 22 publications

Hepatic parenchymal preserving technique in the management of diffuse bilateral neuroendocrine tumour liver metastases: a feasible approach

Hepatic parenchymal preserving technique in the management of diffuse bilateral neuroendocrine tumour liver metastases: a feasible approach

Patient-Reported Outcome–Based Performance Measures for Older Adults with Multiple Chronic Conditions

Flushing Disorders Associated with Gastrointestinal Symptoms: Part 1, Neuroendocrine Tumors, Mast Cell Disorders and Hyperbasophila

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Comparison of Health-Related Quality of Life in Patients With Neuroendocrine Tumors With Quality of Life in the General US Population

Cited by 158 publications

References 22 publications

Hepatic parenchymal preserving technique in the management of diffuse bilateral neuroendocrine tumour liver metastases: a feasible approach

Hepatic parenchymal preserving technique in the management of diffuse bilateral neuroendocrine tumour liver metastases: a feasible approach

Patient-Reported Outcome&ndash;Based Performance Measures for Older Adults with Multiple Chronic Conditions

Flushing Disorders Associated with Gastrointestinal Symptoms: Part 1, Neuroendocrine Tumors, Mast Cell Disorders and Hyperbasophila

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Patient-Reported Outcome–Based Performance Measures for Older Adults with Multiple Chronic Conditions