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Laing E, Gough K, Krishnasamy M, Michael M, Kiss N. Prevalence of malnutrition and nutrition-related complications in patients with gastroenteropancreatic neuroendocrine tumours. J Neuroendocrinol 2022; 34:e13116. [PMID: 35415851 DOI: 10.1111/jne.13116] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/09/2021] [Revised: 02/16/2022] [Accepted: 02/25/2022] [Indexed: 11/29/2022]
Abstract
Cross-sectional studies report that up to 25% of people with gastroenteropancreatic neuroendocrine tumours (GEP NET) are malnourished. However, the changes in nutritional status and dietary intake over time are unknown. The present study aimed to comprehensively describe the impact of a GEP NET on nutritional status and quality of life (QOL). Patients diagnosed with a GEP NET were recruited to this prospective longitudinal study on initial attendance to the NET Unit at two tertiary hospitals in Melbourne (VIC, Australia). Patient self-reported QOL measures (European Organisation for Research and Treatment Cancer QLC-C30 and QLC-GINET21) and nutritional outcomes (nutritional status, weight change, fat-free mass [FFM], dietary change, dietitian contact) were collected bi-monthly for six months. Sixty-one patients were recruited (66% male) with a mean ± SD age of 62 ± 12 years, predominantly diagnosed with small intestinal NET and Grade 1/2 disease. Commonly reported symptoms were fatigue (79%), abdominal discomfort (75%) and pain (68%). More patients were malnourished at baseline than at 6 months (29% vs. 13%). Over this 6 months, 48% lost weight, 20% lost ≥ 5% of their body weight, and 62% lost FFM with an average FFM loss of 2.8 kg (95% confidence interval = 2.0, 3.6), consistent with altered body composition. Dietary change was reported by 56% at baseline and 53% at six months, but only 21% consulted a dietitian at baseline and 18% at 6 months. Clinically significant loss of weight and FFM affected many patients with a GEP NET; however, few patients were referred to/or received a consultation with a dietitian. Valid screening practices are needed to identify weight loss and nutrition issues in GEP NET patients, and to facilitate referral to dietitian services.
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Affiliation(s)
- Erin Laing
- Nutrition and Speech Pathology Department, Peter MacCallum Cancer Centre, Victorian Comprehensive Cancer Centre, Melbourne, VIC, Australia
- Department of Nursing, School of Health Sciences, The University of Melbourne, Melbourne, VIC, Australia
| | - Karla Gough
- Department of Nursing, School of Health Sciences, The University of Melbourne, Melbourne, VIC, Australia
- Department of Health Services Research, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia
| | - Meinir Krishnasamy
- Department of Nursing, School of Health Sciences, The University of Melbourne, Melbourne, VIC, Australia
- Victorian Comprehensive Cancer Centre, Melbourne, VIC, Australia
- Academic Nursing Unit, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia
| | - Michael Michael
- Neuroendocrine Unit (ENETs COE), Peter MacCallum Cancer Centre, Victorian Comprehensive Cancer Centre, Melbourne, VIC, Australia
- Sir Peter MacCallum Department of Medical Oncology, The University of Melbourne, Melbourne, VIC, Australia
| | - Nicole Kiss
- Institute for Physical Activity and Nutrition (IPAN), Deakin University, Geelong, VIC, Australia
- Allied Health Research, Peter MacCallum Cancer Centre, Victorian Comprehensive Cancer Centre, Melbourne, VIC, Australia
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Gosain R, Gupta M, Roy AM, Strosberg J, Glaser KM, Iyer R. Health-Related Quality of Life (HRQoL) in Neuroendocrine Tumors: A Systematic Review. Cancers (Basel) 2022; 14:1428. [PMID: 35326587 PMCID: PMC8946839 DOI: 10.3390/cancers14061428] [Citation(s) in RCA: 12] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/03/2022] [Revised: 03/08/2022] [Accepted: 03/08/2022] [Indexed: 12/28/2022] Open
Abstract
Therapeutic advancements in neuroendocrine tumors (NETs) have improved survival outcomes. This study aims to review the impact of the current therapeutics on health-related quality of life (HRQoL) in NET patients. A literature review was performed utilizing PubMed, The Cochrane Library, and EMBASE, using the keywords "Carcinoid", "Neuroendocrine tumor", "NET", "Quality of life", "Chemotherapy", "Chemoembolization", "Radiofrequency ablation", "Peptide receptor radionucleotide therapy", "PRRT", "Surgery", "Everolimus", "Octreotide", "Lanreotide", "Sunitinib", and "Somatostatin analog". Letters, editorials, narrative reviews, case reports, and studies not in English were excluded. Out of 2375 publications, 61 studies met our inclusion criteria. The commonly used instruments were EORTC QLQ-C30, FACT G, and EORTC- QLQ GI.NET-21. HRQoL was assessed in all pivotal trials that led to approvals of systemic therapies. All systemic therapies showed no worsening in HRQoL. The NETTER-1 study was the only study to show a statistically significant improvement in HRQoL in several domains. The trial examining sunitinib versus placebo in pancreatic NETs showed no change in QoL, except for worsening of diarrhea. In addition to clinical outcomes, patient-reported outcomes are a key element in making appropriate treatment decisions. HRQoL data should be readily provided to patients to assist in shared decision-making.
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Affiliation(s)
- Rohit Gosain
- University of Pittsburgh Medical Center (UPMC) Hillman Cancer Center, UPMC Chautauqua Hospital, Jamestown, NY 14701, USA;
| | - Medhavi Gupta
- Program in Women’s Oncology, Women and Infants Hospital and Warren Alpert Medical School of Brown University, Providence, RI 02912, USA;
| | - Arya Mariam Roy
- Department of Medicine, Roswell Park Comprehensive Cancer Center, Buffalo, NY 14263, USA;
| | - Jonathan Strosberg
- Department of Gastro Intestinal Oncology, Moffitt Cancer Center, 12902 Magnolia Dr., Tampa, FL 33612, USA;
| | - Kathryn M. Glaser
- Department of Cancer Prevention & Control, Roswell Park Comprehensive Cancer Center, Buffalo, NY 14263, USA;
| | - Renuka Iyer
- Department of Medicine, Roswell Park Comprehensive Cancer Center, Buffalo, NY 14263, USA;
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van Leeuwaarde RS, González-Clavijo AM, Pracht M, Emelianova G, Cheung WY, Thirlwell C, Öberg K, Spada F. A Multinational Pilot Study on Patients' Perceptions of Advanced Neuroendocrine Neoplasms on the EORTC QLQ-C30 and EORTC QLQ-GINET21 Questionnaires. J Clin Med 2022; 11:jcm11051271. [PMID: 35268362 PMCID: PMC8910955 DOI: 10.3390/jcm11051271] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/22/2022] [Revised: 02/20/2022] [Accepted: 02/22/2022] [Indexed: 12/29/2022] Open
Abstract
Among the available neuroendocrine neoplasm (NEN)-specific HR-QoL scales, only the EORTC QLQ-C30 and EORTC QLQ-G.I.NET21 questionnaires have been validated in several languages. We aim to assess patients' perceptions of these questionnaires. A cross-sectional qualitative pilot study was conducted among 65 adults from four countries with well-differentiated advanced gastro-entero-pancreatic (GEP) or unknown primary NENs. Patients completed the EORTC QLQ-C30 and EORTC QLQ-G.I.NET21 questionnaires and then a survey containing statements concerning the questionnaires. The majority of patients had a small intestine NET (52%). Most tumors were functioning (55%) and grade 2 NET (52%). Almost half of the patients identified limitations in the questionnaires, with nine (14%) patients scoring the questionnaires as poor and 16 (25%) patients as moderate. Overall, 37 (57%) patients were positive towards the questionnaires. Approximately a quarter of patients considered the questionnaires not suitable for all ages, missing some of their complaints, not representative of their overall HR-QoL regarding the treatment of their NET and too superficial. The current validated EORTC QLQ-C30 and EORTC QLQ-G.I.NET21 questionnaires may show some limitations in the design of questions and the patients' final satisfaction reporting of the questionnaire. Large-scale, high-quality prospective studies are required in HR-QoL assessment regarding NETs.
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Affiliation(s)
- Rachel S. van Leeuwaarde
- Department of Endocrine Oncology, University Medical Center Utrecht, 3584 Utrecht, The Netherlands;
| | - Angélica M. González-Clavijo
- Department of Physiological Sciences, School of Medicine, Universidad Nacional de Colombia, Bogota 111321, Colombia;
- Instituto Nacional de Cancerología, Bogota 111321, Colombia
| | - Marc Pracht
- Department of Medical Oncology, Centre Eugène Marquis, 35000 Rennes, France;
| | - Galina Emelianova
- Department of Oncology, National Medical Research Center N.N. Blokhin, 115191 Moscow, Russia;
- Department of Medicine and Dentistry, A.I. Yevdokimov Moscow State University, 127473 Moscow, Russia
| | - Winson Y. Cheung
- Department of Oncology, University of Calgary, Tom Baker Cancer Center, Calgary, AB T2N 4N2, Canada;
| | - Christina Thirlwell
- Cancer Institute, University College London, London WC1E 6DD, UK;
- Department of Medicine and Health, University of Exeter School, Exeter EX4 4PY, UK
| | - Kjell Öberg
- Department of Endocrine Oncology, Uppsala University Hospital, 75185 Uppsala, Sweden;
- Department of Medical Sciences, Uppsala University, 75236 Uppsala, Sweden
| | - Francesca Spada
- Division of Gastrointestinal Medical Oncology and Neuroendocrine Tumors, European Institute of Oncology (IEO), Istituto di Ricovero e Cura a Carattere Scientifico, 20141 Milan, Italy
- Correspondence: ; Tel.: +39-02-57489258
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Begum N, Hunold H, Gerdes B, Keck T, Waldmann A. Anxiety, Depression and Quality of Life in Patients with Neuroendocrine Neoplasia After Surgery. World J Surg 2022; 46:1408-1419. [PMID: 35194674 PMCID: PMC9054889 DOI: 10.1007/s00268-022-06479-z] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 01/25/2022] [Indexed: 12/17/2022]
Abstract
BACKGROUND Neuroendocrine neoplasia (NEN) are rare and complex, with surgery as key therapy even in cases with metastasis. Little is known regarding the quality of life, prevalence of depression, anxiety and the impact of surgery. METHODS This prospective, follow-up study included 90 consecutively recruited patients with NEN after surgery in a university hospital. The EORTC QLQ-C30, EORTC QLQ-GI-NET.21, and Hospital Anxiety and Depression Scale and a hospital specific questionnaire were completed during follow-up after 3 to 5 years (t1-t5). RESULTS Mean age was 54 (SD 15) years, 13% had secondary malignancies and 11% had psychiatric diagnoses (depression n = 8, schizophrenia n = 2) pre-existent. Critical life events occurred in 51% within 5 years before diagnosis. Surgery was done in curative intention in 82% and R0-resection rate was 90%. The median survival was 25.3 years. The 10-year survival rate was 87%, 98%, 95% and 26% for all patients (n = 90), stage I/II (n = 45), stage III (n = 25) and stage IV (n = 20), respectively (p < .001). Anxiety score was pathological in 30% after 1 year (t1) and in 10% after 5 years, depression score in 25% (t1) and 30% (t5). Fatigue and muscle/body pain were elevated symptoms with > 50 and 40 points 3 years after surgery. CONCLUSION Depression rate remains high whereas anxiety declines over time. Fatigue and muscle/body pain were identified as relevantly elevated after surgery. Systematic screening and supportive therapy should be implemented during follow-up after surgery.
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Affiliation(s)
- Nehara Begum
- Department of General-, Visceral-, Thoracic- and Endocrine Surgery, Johannes Wesling Klinikum Minden, University Hospital of the Ruhr-University Bochum(RUB), Hans-Nolte Str. 1, 32429, Minden, Germany. .,Department for General Surgery, University Hospital Schleswig-Holstein (UKSH), Ratzeburger Allee 160, 23538, Luebeck, Germany.
| | - Hannah Hunold
- Institute of Social Medicine and Epidemiology, University of Luebeck, Luebeck, Germany
| | - Berthold Gerdes
- Department of General-, Visceral-, Thoracic- and Endocrine Surgery, Johannes Wesling Klinikum Minden, University Hospital of the Ruhr-University Bochum(RUB), Hans-Nolte Str. 1, 32429, Minden, Germany
| | - Tobias Keck
- Department for General Surgery, University Hospital Schleswig-Holstein (UKSH), Ratzeburger Allee 160, 23538, Luebeck, Germany
| | - Annika Waldmann
- Institute of Social Medicine and Epidemiology, University of Luebeck, Luebeck, Germany
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Song L, Cao Y, Li J, Lu M, Tang L. Psychological distress and resilience in patients with gastroenteropancreatic neuroendocrine tumor. Front Endocrinol (Lausanne) 2022; 13:947998. [PMID: 36465662 PMCID: PMC9708874 DOI: 10.3389/fendo.2022.947998] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/19/2022] [Accepted: 10/27/2022] [Indexed: 11/17/2022] Open
Abstract
An increased incidence of gastroenteropancreatic neuroendocrine tumors (GEP-NETs) has been reported in many countries. However, the prevalence and impact factors of psychological distress and resilience in patients with GEP-NETs are unclear. We recruited 200 patients with GEP-NETs to assess psychological distress and resilience. Measures comprised the Distress Thermometer, the Hospital Anxiety and Depression Scale, Connor-Davidson Resilience scale and Medical Coping Modes Questionnaire. Our results found that the prevalence of distress, anxiety, depression and low resilience were 31.5%, 31%, 17.8%, and 25.9%, respectively. Female patients were more likely to be distressed, as were those with NET Grade 1, were partly aware of diagnosis, and had known the diagnosis less than 3 months. Distress positively correlated with acceptance-resignation, and resilience positively correlated with confrontation and avoidance. Resilience negatively correlated with psychological distress. Patients coping disease with acceptance-resignation had higher odds of anxiety, depression, and low resilience. Our findings indicate that psychological distress and low resilience were common in patients with GEP-NETs. This suggests a need to integrate psychosocial domain into GEP-NETs clinical practice.
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Affiliation(s)
- Lili Song
- Department of Psycho-Oncology, Key Laboratory of Carcinogenesis and Translational Research (Ministry of Education/Beijing), Peking University Cancer Hospital and Institute, Beijing, China
| | - Yanshuo Cao
- Department of Gastrointestinal Oncology, Key Laboratory of Carcinogenesis and Translational Research (Ministry of Education/Beijing), Peking University Cancer Hospital and Institute, Beijing, China
| | - Jie Li
- Department of Gastrointestinal Oncology, Key Laboratory of Carcinogenesis and Translational Research (Ministry of Education/Beijing), Peking University Cancer Hospital and Institute, Beijing, China
| | - Ming Lu
- Department of Gastrointestinal Oncology, Key Laboratory of Carcinogenesis and Translational Research (Ministry of Education/Beijing), Peking University Cancer Hospital and Institute, Beijing, China
- *Correspondence: Lili Tang, ; Ming Lu,
| | - Lili Tang
- Department of Psycho-Oncology, Key Laboratory of Carcinogenesis and Translational Research (Ministry of Education/Beijing), Peking University Cancer Hospital and Institute, Beijing, China
- *Correspondence: Lili Tang, ; Ming Lu,
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Lauricella E, Cives M, Bracigliano A, Clemente O, Felici V, Lippolis R, Amoruso B, Pelle' E, Mandriani B, Esposto C, Forte C, Perri F, Porta C, Tafuto S. The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability. J Neuroendocrinol 2021; 33:e13041. [PMID: 34596289 PMCID: PMC8646700 DOI: 10.1111/jne.13041] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/16/2021] [Revised: 08/06/2021] [Accepted: 09/05/2021] [Indexed: 12/14/2022]
Abstract
The COVID-19 pandemic has added another layer of complexity to the fears of patients with neuroendocrine tumors (NETs). Little is known regarding the psychological impact of the COVID-19 outbreak on patients with gastroenteropancreatic or bronchopulmonary (BP) NETs. We longitudinally surveyed the mental symptoms and concerns of NET patients during the plateau phase of the first (W1) and second epidemic waves (W2) in Italy. Seven specific constructs (depression, anxiety, stress, health-related quality of life, NET-related quality of life, patient-physician relationship, psychological distress) were investigated using validated screening instruments, including DASS-21, EORTC QLQ-C30, EORTC QLQ GI.NET21, PDRQ9 and IES-R. We enrolled 197 patients (98 males) with a median age of 62 years. The majority of the patients had G1/G2 neoplasms. Some 38% of the patients were on active treatment. At W1, the prevalence of depression, anxiety and stress was 32%, 36% and 26% respectively. The frequency of depression and anxiety increased to 38% and 41% at W2, whereas no modifications were recorded in the frequency of stress. Poor educational status was associated with higher levels of anxiety at both W1 (odds ratio [OR] = 1.33 ± 0.22; p = .07) and W2 (OR = 1.45 ± 0.26; p = .03). Notably, post-traumatic stress symptoms were observed in the 58% of the patients, and both single marital status (OR = 0.16, 95% confidence interval [CI] = 0.06-0.48; p = .0009) and low levels of formal education (OR = 0.47, 95% CI = 0.23-0.99; p = .05) predicted their occurrence. No significant deteriorations of health-related quality of life domains were observed from W1 to W2. High patient care satisfaction was documented despite the changes in health systems resource allocation. NET patients have an increased risk of developing post-traumatic stress symptoms as result of the COVID-19 pandemic. Specific screening measures and psychological interventions should be implemented in NET clinics to prevent, recognize and treat mental distress in this vulnerable population.
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Affiliation(s)
- Eleonora Lauricella
- Department of Biomedical Sciences and Human Oncology, University of Bari "Aldo Moro", Bari, Italy
| | - Mauro Cives
- Department of Biomedical Sciences and Human Oncology, University of Bari "Aldo Moro", Bari, Italy
- National Cancer Institute, IRCCS Istituto Tumori Giovanni Paolo II, Bari, Italy
| | | | - Ottavia Clemente
- Istituto Nazionale Tumori, IRCCS Fondazione "G. Pascale", Naples, Italy
| | - Valentina Felici
- Department of Biomedical Sciences and Human Oncology, University of Bari "Aldo Moro", Bari, Italy
| | - Rossella Lippolis
- Department of Biomedical Sciences and Human Oncology, University of Bari "Aldo Moro", Bari, Italy
| | - Brunella Amoruso
- Department of Biomedical Sciences and Human Oncology, University of Bari "Aldo Moro", Bari, Italy
| | - Eleonora Pelle'
- Department of Biomedical Sciences and Human Oncology, University of Bari "Aldo Moro", Bari, Italy
| | - Barbara Mandriani
- Department of Biomedical Sciences and Human Oncology, University of Bari "Aldo Moro", Bari, Italy
| | - Chiara Esposto
- Department of Biomedical Sciences and Human Oncology, University of Bari "Aldo Moro", Bari, Italy
| | - Cira Forte
- Istituto Nazionale Tumori, IRCCS Fondazione "G. Pascale", Naples, Italy
| | - Francesco Perri
- Istituto Nazionale Tumori, IRCCS Fondazione "G. Pascale", Naples, Italy
| | - Camillo Porta
- Department of Biomedical Sciences and Human Oncology, University of Bari "Aldo Moro", Bari, Italy
| | - Salvatore Tafuto
- Istituto Nazionale Tumori, IRCCS Fondazione "G. Pascale", Naples, Italy
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La Salvia A, Portigliatti Pomeri A, Persano I, Trevisi E, Parlagreco E, Colombi N, Brizzi MP, Picci RL, Oliva F. Serotoninergic brain dysfunction in neuroendocrine tumor patients: A scoping review. Compr Psychiatry 2021; 109:152244. [PMID: 34120056 DOI: 10.1016/j.comppsych.2021.152244] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/19/2020] [Revised: 04/03/2021] [Accepted: 05/07/2021] [Indexed: 01/27/2023] Open
Abstract
INTRODUCTION Neuroendocrine tumors (NETs) are rare and malignant neoplasms characterized by their potential to produce metabolically active substances with the capacity to bring about clinical syndromes. The clinical expression of serotonin-producing NETs is known as carcinoid syndrome (CS). The synthesis of serotonin in the brain is dependent on tryptophan availability. At the central level, serotonin is indispensable for mood, anxiety, and sleep regulation. In CS patients, around 60% of all tryptophan is reported to be consumed by tumor cells for the peripheral synthesis of serotonin, increasing the risk of a central deficiency and thus psychiatric disorders. MATERIALS AND METHODS This manuscript reviews the existing literature about psychiatric disorders associated with NETs and addresses the safety of psychiatric drugs in these patients. A systematic search of the biomedical literature was performed using the following databases: PubMed, Embase, CINAHL (EBSCO), PsycInfo (OVID), and Cochrane CENTRAL (Wiley). The database search included articles published between January 1965 and February 2021. Relevant information were charted using a calibrated charting-form. RESULTS Twenty-two articles were included in the present review. The overall population size of the studies came to 3319 patients. All patients presented a confirmed diagnosis of NET. The information about the presence of CS was confirmed in 351 cases. The psychiatric symptoms reported included mood disturbances (including, depression and anxiety), psychoses, impulse control disorders and sleeping alterations. We also evaluated the presence of cognitive impairments in NET patients. Finally, we summarize the available data regarding the safety of psychiatric drugs in this setting. CONCLUSIONS Psychiatric disorders among NET patients are poorly recognized, and therefore have received very little research attention. As a result, no standardized algorithm is presently available. Our findings support detailed psychiatric evaluation in NET patients, especially in those presenting CS and symptoms suggestive of psychiatric involvement. Not only do cognitive impairment and psychiatry symptoms negatively impact health-related quality of life in cancer patients, they can also reduce survival rates.
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Affiliation(s)
- Anna La Salvia
- Department of Oncology, 12 de Octubre University Hospital, Madrid, Spain.
| | | | - Irene Persano
- Federated Library of Medicine "Ferdinando Rossi", University of Turin, Turin, Italy
| | - Elena Trevisi
- Federated Library of Medicine "Ferdinando Rossi", University of Turin, Turin, Italy
| | - Elena Parlagreco
- Federated Library of Medicine "Ferdinando Rossi", University of Turin, Turin, Italy
| | - Nicoletta Colombi
- Department of Oncology, San Luigi Gonzaga University Hospital, Regione Gonzole, 10, 10043 Orbassano, Turin, Italy
| | - Maria Pia Brizzi
- Federated Library of Medicine "Ferdinando Rossi", University of Turin, Turin, Italy
| | - Rocco Luigi Picci
- Department of Clinical and Biological Sciences, University of Turin, Orbassano (TO), Regione Gonzole, 10, 10043 Orbassano, Turin, Italy
| | - Francesco Oliva
- Department of Clinical and Biological Sciences, University of Turin, Orbassano (TO), Regione Gonzole, 10, 10043 Orbassano, Turin, Italy
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Use of healthcare REsources and associated COsts in controlled versus uncontrolled carcinoid SYndrome in patients with neuroendocrine tumours: the RECOSY study. Clin Transl Oncol 2021; 23:2046-2056. [PMID: 34109562 PMCID: PMC8390421 DOI: 10.1007/s12094-021-02608-7] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/22/2021] [Accepted: 03/22/2021] [Indexed: 10/29/2022]
Abstract
PURPOSE To report healthcare resource use and associated costs in controlled versus uncontrolled carcinoid syndrome (CS) in patients with neuroendocrine tumours. METHODS A cross-sectional, non-interventional multicentre study was conducted with retrospective data analysis. Resource use was compared between two patient groups: those with controlled CS (> 12 months with no uncontrolled CS episodes) and uncontrolled CS (< 12 months since last uncontrolled episode). Patients were matched for age, sex, and origin and grade of tumour. When no matching patients were available, data from deceased patients were used. Information on healthcare resource use came from review of medical records, patient history and physician reports. Working capacity was assessed using the Work Productivity and Activity Impairment General Health questionnaire. RESULTS Twenty-six university hospitals in Spain participated, between July 2017 and April 2018. 137 patients were enrolled; 104 were analysed (2 groups of 52). Patients with uncontrolled CS had 10 times more emergency department (ED) visits (mean 1.0 vs 0.10 visits; P = 0.0167), were more likely to have a hospital admission (40.4% vs 19.2%; P = 0.0116) and had longer hospital stays (mean 7.87 vs 2.10 days; P = 0.0178) than those with controlled CS. This corresponded to higher annual hospitalisation costs (mean €5511.59 vs €1457.22; P = 0.028) and ED costs (€161.25 vs €14.85; P = 0.0236). The mean annual total healthcare costs were 60.0% higher in patients with uncontrolled than controlled CS (P = NS). CONCLUSION This study quantifies higher health resource use, and higher hospitalisation and ED costs in patients with uncontrolled CS. Better control of CS may result 3in lower medical costs.
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Scandurra C, Modica R, Maldonato NM, Dolce P, Dipietrangelo GG, Centello R, Di Vito V, Bottiglieri F, de Cicco F, Giannetta E, Isidori AM, Lenzi A, Muzii B, Faggiano A, Colao A. Quality of Life in Patients with Neuroendocrine Neoplasms: The Role of Severity, Clinical Heterogeneity, and Resilience. J Clin Endocrinol Metab 2021; 106:e316-e327. [PMID: 33084861 DOI: 10.1210/clinem/dgaa760] [Citation(s) in RCA: 20] [Impact Index Per Article: 5.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/31/2020] [Indexed: 12/12/2022]
Abstract
CONTEXT Although health-related quality of life (HRQoL) is a fundamental outcome in oncological clinical trials, its evaluation in the neuroendocrine neoplasm (NEN) research field is still limited. OBJECTIVES This study assessed the role of clinical severity (ie, presence or absence of metastasis and lines of therapies) and heterogeneity (ie, primary site, types of therapy, biology, and surgery) of NEN in relation to HRQoL, as well as resilience as a moderator between clinical severity and HRQoL. DESIGN Cross-sectional multicentric study. SETTING Italian university hospitals. PATIENTS A total of 99 Italian patients (53 men and 46 women) with NEN and ranged in age from 22-79 years old. MAIN OUTCOME MEASURE Severity and heterogeneity of NENs, HRQoL, and resilience. RESULTS The presence of metastasis and a greater number of therapies affected the global health and some physical symptoms. Resilience was associated with global health, functional status, and some physical symptoms, and it moderated the impact of metastases on constipation and of the multiple therapies on diarrhea and financial problems. Patients with NEN in districts other than the gastroenteropancreatic system and those in follow-up perceived fewer physical symptoms than their counterparts. Patients with a sporadic NEN perceived their functional status, global health, and disease-related worries as better than those with a hereditary NEN. Patients who underwent surgery were lower in constipation than their counterparts. CONCLUSION These findings highlight the need to assess the relationships between the clinical severity and heterogeneity of NEN with HRQoL and the role of resilience in improving patients' HRQoL.
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Affiliation(s)
- Cristiano Scandurra
- Department of Neuroscience, Reproductive Sciences and Dentistry, University of Naples Federico II, Naples, Italy
| | - Roberta Modica
- Department of Clinical Medicine and Surgery, University of Naples Federico II, Naples, Italy
| | - Nelson Mauro Maldonato
- Department of Neuroscience, Reproductive Sciences and Dentistry, University of Naples Federico II, Naples, Italy
| | - Pasquale Dolce
- Department of Public Health, University of Naples Federico II, Naples, Italy
| | | | - Roberta Centello
- Department of Experimental Medicine, "Sapienza" University of Rome, Rome, Italy
| | - Valentina Di Vito
- Department of Experimental Medicine, "Sapienza" University of Rome, Rome, Italy
| | - Filomena Bottiglieri
- Department of Clinical Medicine and Surgery, University of Naples Federico II, Naples, Italy
| | - Federica de Cicco
- Department of Clinical Medicine and Surgery, University of Naples Federico II, Naples, Italy
| | - Elisa Giannetta
- Department of Experimental Medicine, "Sapienza" University of Rome, Rome, Italy
| | - Andrea M Isidori
- Department of Experimental Medicine, "Sapienza" University of Rome, Rome, Italy
| | - Andrea Lenzi
- Department of Experimental Medicine, "Sapienza" University of Rome, Rome, Italy
| | - Benedetta Muzii
- Department of Humanistic Studies, University of Naples Federico II, Naples, Italy
| | | | - Annamaria Colao
- Department of Clinical Medicine and Surgery, University of Naples Federico II, Naples, Italy
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Lu L, Shang Y, Zechner D, Mullins CS, Linnebacher M, Zhang X, Gong P. Development and Validation of a Score for Screening Suicide of Patients With Neuroendocrine Neoplasms. Front Psychiatry 2021; 12:638152. [PMID: 34177643 PMCID: PMC8225995 DOI: 10.3389/fpsyt.2021.638152] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/05/2020] [Accepted: 05/19/2021] [Indexed: 11/16/2022] Open
Abstract
Background: If the diagnosis of neuroendocrine neoplasm (NEN) increases the risk of patients to commit suicide has not been investigated so far. Identifying NEN patients at risk to commit suicide is important to increase their life quality and life expectancy. Methods and findings: Cancer cases were extracted from the Surveillance, Epidemiology, and End Results program and were divided into the NEN and the non-NEN cohorts. Subsequently, the NEN patients were randomly split into a training data set and a validation data set. Analyzing the training data set, we developed a score for assessing the risk to commit suicide for patients with NEN. In addition, we validated the score using the validation data set and evaluated, if this score could also be applied to other cancer entities by using the test data set, a non-NEN cohort. The odds ratio (OR) of suicide between NEN and non-NEN patients was determined. Moreover, the performance of a score was evaluated by the receiver operating characteristic curve and the area under the curve (AUC). Compared to non-NEN, NEN significantly increased the risk of suicide to 1.8-fold (NEN vs. non-NEN; OR, 1.832; P < 0.001). In addition, we observed that age, gender, race, marital status, tumor stage, histologic grade, surgery, and chemotherapy were associated with suicide among NEN patients; and a synthesized score based on these factors could significantly distinguish suicide individuals from non-suicide individuals in the training data set (AUC, 0.829; P < 0.001) and in the validation data set (AUC, 0.735; P < 0.001). This score also had a good performance when it was assessed by the test data set (AUC, 0.690; P < 0.001). This demonstrates that the score might also be applicable to other cancer entities. Conclusions: This population-based study suggests that NEN patients have a higher risk of suicide than non-NEN patients. In addition, this study provided a score, which can identify NEN patients at high-risk of committing suicide. Thus, this score in combination with current screening and prevention strategies for suicide may improve life quality and life expectancy of NEN patients.
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Affiliation(s)
- Lili Lu
- Department of General Surgery, Molecular Oncology, and Immunotherapy, Rostock University Medical Center, Rostock, Germany
| | - Yuru Shang
- Department of Plastic Surgery, Southern University of Science and Technology Hospital, Shenzhen, China
| | - Dietmar Zechner
- Institute for Experimental Surgery, Rostock University Medical Center, Rostock, Germany
| | - Christina Susanne Mullins
- Department of General Surgery, Molecular Oncology, and Immunotherapy, Rostock University Medical Center, Rostock, Germany
| | - Michael Linnebacher
- Department of General Surgery, Molecular Oncology, and Immunotherapy, Rostock University Medical Center, Rostock, Germany
| | - Xianbin Zhang
- Department of General Surgery, Carson International Cancer Research Center, Shenzhen University General Hospital, Shenzhen University Clinical Medical Academy, Shenzhen, China.,Guangdong Key Laboratory for Biomedical Measurements and Ultrasound Imaging, School of Biomedical Engineering, Shenzhen University Health Science Center, Shenzhen, China.,Guangdong Key Laboratory of Regional Immunity and Diseases, Shenzhen University Health Science Center, Shenzhen, China
| | - Peng Gong
- Department of General Surgery, Carson International Cancer Research Center, Shenzhen University General Hospital, Shenzhen University Clinical Medical Academy, Shenzhen, China.,Guangdong Key Laboratory for Biomedical Measurements and Ultrasound Imaging, School of Biomedical Engineering, Shenzhen University Health Science Center, Shenzhen, China.,Guangdong Key Laboratory of Regional Immunity and Diseases, Shenzhen University Health Science Center, Shenzhen, China
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11
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Watson C, Tallentire CW, Ramage JK, Srirajaskanthan R, Leeuwenkamp OR, Fountain D. Quality of life in patients with gastroenteropancreatic tumours: A systematic literature review. World J Gastroenterol 2020; 26:3686-3711. [PMID: 32742136 PMCID: PMC7366058 DOI: 10.3748/wjg.v26.i25.3686] [Citation(s) in RCA: 9] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/09/2020] [Revised: 06/04/2020] [Accepted: 06/16/2020] [Indexed: 02/06/2023] Open
Abstract
BACKGROUND Gastroenteropancreatic neuroendocrine tumours (GEP-NETs) are slow-growing cancers that arise from diffuse endocrine cells in the gastrointestinal tract (GI-NETs) or the pancreas (P-NETs). They are relatively uncommon, accounting for 2% of all gastrointestinal malignancies. The usual treatment options in advanced GEP-NET patients with metastatic disease include chemotherapy, biological therapies, and peptide receptor radionuclide therapy. Understanding the impact of treatment on GEP-NET patients is paramount given the nature of the disease. Health-related quality of life (HRQoL) is increasingly important as a concept reflecting the patients’ perspective in conjunction with the disease presentation, severity and treatment.
AIM To conduct a systematic literature review to identify literature reporting HRQoL data in patients with GEP-NETs between January 1985 and November 2019.
METHODS The PRISMA guiding principles were applied. MEDLINE, Embase and the Cochrane library were searched. Data extracted from the publications included type of study, patient population data (mid-gut/hind-gut/GI-NET/P-NET), sample size, intervention/comparators, HRQoL instruments, average and data spread of overall and sub-scores, and follow-up time for data collection.
RESULTS Forty-three publications met the inclusion criteria. The heterogeneous nature of the different study populations was evident; the percentage of female participants ranged between 30%-60%, whilst average age ranged from 53.8 to 67.0 years. Eight studies investigated GI-NET patients only, six studies focused exclusively on P-NET patients and the remaining studies involved both patient populations or did not report the location of the primary tumour. The most commonly used instrument was the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-C30 (n = 28) with consistent results across studies; the GI-NET-specific module Quality of Life Questionnaire-GINET21 was used in six of these studies. A number of randomised trials demonstrated no HRQoL changes between active treatment and placebo arms. The Phase III NETTER-1 study provides the best data available for advanced GEP-NET patients; it shows that peptide receptor radionuclide therapy can significantly improve GEP-NET patients’ HRQoL.
CONCLUSION HRQoL instruments offer a means to monitor patients’ general disease condition, disease progression and their physical and mental well-being. Instruments including the commonly used European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-C30 and GINET21 lack, however, validation and a defined minimal clinical important difference specifically for GI-NET and P-NET patients.
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Affiliation(s)
- Catherine Watson
- PHMR Health Economics, Pricing and Reimbursement, London NW1 8XY, United Kingdom
| | | | - John K Ramage
- Kings Health Partners NET centre, Kings College Hospital London, London SE5 9RS, United Kingdom
| | | | | | - Donna Fountain
- PHMR Health Economics, Pricing and Reimbursement, London NW1 8XY, United Kingdom
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12
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Sorbye H, Meyer LS, Mordal KE, Myhre S, Thiis-Evensen E. Patient reported symptoms, coping and quality of life during somatostatin analogue treatment for metastatic small- intestinal neuroendocrine tumours. Health Qual Life Outcomes 2020; 18:188. [PMID: 32546236 PMCID: PMC7298767 DOI: 10.1186/s12955-020-01452-7] [Citation(s) in RCA: 9] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/28/2020] [Accepted: 06/11/2020] [Indexed: 12/15/2022] Open
Abstract
BACKGROUND Patients with metastatic small-intestinal neuroendocrine tumours (NET) have been shown to have a reduced quality of life compared to the general population and many have disabling symptoms during somatostatin analogue (SSA) treatment. The aim of this prospective study was to document the patient-reported symptoms, coping and quality of life during SSA treatment and to measure patients' fat-soluble vitamin levels. METHODS Patients with metastatic small-intestinal NET on treatment with long-acting SSA were included. Data on patient characteristics, blood samples, questionnaires (EORTC-QLQ-C30 and GI.NET-21) and structured patient interviews were collected at inclusion and after 1 year. RESULTS Eighty-eight patients were included, 77 (88%) attended 1 year follow-up. Approximately 50% of patients reported symptoms, the most common symptoms at baseline and after 1 year follow-up were diarrhoea, flatulence, fatigue, abdominal discomfort and sore injection lumps. Diarrhoea and fatigue were reported as their main complaint, 23% had > 5 daily episodes of diarrhoea and 59% reported fatigue. However, patients reported a high perceived quality of life, high daily activity, coped with their symptoms and managed their daily life well. Deficiency of vitamin D (27%) and A (13%) were observed. CONCLUSIONS Patients with metastatic small-intestinal NET on SSA treatment reported a high frequency of symptoms. Minor improvements were seen after 1-year of follow-up, illustrating that many symptoms might be difficult to improve, or may not be recognised by the health service. Patients, however, generally reported a high quality of life. Care for NET patients on SSA treatment should include a regular systematic symptom registration and vitamin measurements.
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Affiliation(s)
- Halfdan Sorbye
- Department of Oncology, Haukeland University Hospital, Jonas Lies vei 65, 5021, Bergen, Norway. .,Department of Clinical Science, University of Bergen, Bergen, Norway.
| | - Liv Sylvi Meyer
- Department of Oncology, Haukeland University Hospital, Jonas Lies vei 65, 5021, Bergen, Norway
| | - Kjersti Elisabeth Mordal
- Neuroendocrine Tumour Centre of Excellence, Department of Gastroenterology, Oslo University Hospital, Rikshospitalet, Oslo, Norway
| | | | - Espen Thiis-Evensen
- Neuroendocrine Tumour Centre of Excellence, Department of Gastroenterology, Oslo University Hospital, Rikshospitalet, Oslo, Norway
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13
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Adams JR, Ray D, Willmon R, Pulgar S, Dasari A. Living With Neuroendocrine Tumors: Assessment of Quality of Life Through a Mobile Application. JCO Clin Cancer Inform 2020; 3:1-10. [PMID: 31283354 PMCID: PMC6873920 DOI: 10.1200/cci.19.00025] [Citation(s) in RCA: 16] [Impact Index Per Article: 3.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/20/2022] Open
Abstract
PURPOSE To understand the quality of life (QoL) for patients with neuroendocrine tumors (NETs) through comparison of QoL questionnaires and symptom tracking as well as journaling via the Carcinoid NETs Health Storylines mobile application (app). PATIENTS AND METHODS This was a 12-week prospective, observational study of US patients with NET who were taking long-acting somatostatin analogs. National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS) and European Organisation for Research and Treatment of Cancer (EORTC) questionnaires were administered three times. Patients also monitored symptoms, mood, bowel movements, food, activity, and sleep, and they journaled in their app, which was coded by theme and sentiment for qualitative analysis. RESULTS Of the 120 patients with NET, 78% were women (mean age, 57 years); 76% had gastroenteropancreatic NETs, and 88% had metastases. Lanreotide depot and octreotide long-acting release (LAR) were used by 41% and 59%, respectively. The most common symptoms at baseline were fatigue (76.7%), diarrhea (62.5%), abdominal discomfort (64.1%), and trouble sleeping (57.5%). The majority completed five of six survey assessments (median, 5; mean, 5.1) and tracked four symptoms in the app (median, 4; mean, 5.5); the average frequency was 41.6 days for each symptom (median, 43; mean, 41.6; range, 1 to 84 days [12 weeks]). Without treatment change, most EORTC-assessed physical symptoms decreased from baseline to midpoint (eg, 59.3% at baseline v 33% at midpoint reported “quite a bit” or “very much” diarrhea; P = .002). App-based symptom tracking revealed large day-to-day variation, but weekly averages correlated well with survey scores. Journal entries showed that more patients made predominantly negative unsolicited entries about their injection experience with octreotide LAR compared with lanreotide (13 of 17 v two of 13; P < .001). CONCLUSION Patients with NET experience a large symptom burden that varies daily. A decrease in physical symptoms on QoL surveys suggests an effect from daily app-based monitoring or journaling, which may reduce recall bias and benefit the patient’s experience of symptoms.
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Affiliation(s)
| | - David Ray
- Ipsen Biopharmaceuticals, Basking Ridge, NJ
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14
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Must antidepressants be avoided in patients with neuroendocrine tumors? Results of a systematic review. Palliat Support Care 2020; 18:602-608. [PMID: 32036806 DOI: 10.1017/s147895152000005x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/05/2022]
Abstract
OBJECTIVE Symptoms of depression and anxiety are common in neuroendocrine tumor (NET), yet controversy exists over whether serotonin-mediated antidepressants (SAs) are safe in this population. We sought to address this knowledge gap. METHOD Following PRISMA guidelines, we conducted a systematic review to identify NET patients who were prescribed SA. RESULTS We identified 15 articles, reporting on 161 unique patients, 72 with carcinoid syndrome (CS) and 89 without. There was substantial agreement between reviewers at the full-text stage (κ = 0.69). Three of the articles, all with low risk of bias, accounted for most of the cases (149/161; 93%). Among the 72 NET patients with CS prior to antidepressant usage, CS was exacerbated in 6 cases (8%), only 3 (4%) of whom chose to discontinue the antidepressant. The remaining 89 patients had no prior CS symptoms, and none developed CS following antidepressant usage. Overall, no instances of carcinoid crisis or death were reported. CONCLUSIONS We found no evidence for serious adverse outcomes related to SA usage in NET patients. Previous authors have recommended avoiding antidepressants in NET, but our findings do not support those recommendations. Oncologists should nonetheless monitor for symptom exacerbation when prescribing SA to patients with NET.
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15
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Lesén E, Granfeldt D, Berthon A, Dinet J, Houchard A, Myrenfors P, Björstad Å, Björholt I, Elf AK, Johanson V. Treatment Patterns and Survival among Patients with Metastatic Gastroenteropancreatic Neuroendocrine Tumours in Sweden - a Population-based Register-linkage and Medical Chart Review Study. J Cancer 2019; 10:6876-6887. [PMID: 31839822 PMCID: PMC6909946 DOI: 10.7150/jca.32381] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/18/2018] [Accepted: 09/09/2019] [Indexed: 12/11/2022] Open
Abstract
Background: Gastroenteropancreatic neuroendocrine tumours (GEP-NETs) are neoplasms derived from the endocrine system in the gastrointestinal tract and pancreas. Treatment options include surgery; pharmacological treatments like somatostatin analogues (SSA), interferon alpha, molecular targeted therapy and chemotherapy; and peptide receptor radionuclide therapy. The objective of this study was to describe treatment patterns and survival among patients with metastatic GEP-NET grade 1 or 2 in Sweden. Methods: Data was obtained via linkage of nationwide registers. Patients diagnosed with metastatic GEP-NET grade 1 or 2 in Sweden between 2005 and 2013 were included (n=811; National population). In addition, medical chart review was performed for the subpopulation diagnosed at Sahlgrenska University Hospital, Gothenburg (n=127; Regional population). Treatment patterns, including treatment sequences, and overall survival were assessed. Results: Most patients had small intestinal NET (76%). In the regional population, 72% had grade 1 tumours; 50% had functioning tumours. The two most common first-line treatments were surgery (57%) and SSA (25%). After first-line surgery, 46% received SSA, while 40% had no further treatment. After first-line SSA, 52% received surgery, while 27% had no further treatment. Overall median survival time from date of diagnosis was 7.0 years (95% CI 6.2-not reached). Among patients with distant metastases, pancreatic NET (vs. small intestinal NET) was associated with poorer survival (HR 1.9; 95% CI 1.1-3.3), as were liver metastases (HR 3.2; 95% CI 1.5-7.0). Conclusions: First-line surgery was typically followed by SSA or no further treatment. Among patients with distant metastases, pancreatic NET or liver metastases were associated with a poorer survival.
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Affiliation(s)
- Eva Lesén
- Former employee of PharmaLex, Gothenburg, Sweden
| | | | | | - Jérôme Dinet
- Former employee of Ipsen, Boulogne-Billancourt, France
| | | | | | | | | | - Anna-Karin Elf
- Department of Surgery, Sahlgrenska University Hospital, Gothenburg, Sweden
| | - Viktor Johanson
- Former employee at Department of Surgery, Sahlgrenska University Hospital, Gothenburg, Sweden
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16
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Saravana-Bawan B, Koumna S, Wieler M, McEwan A, McMullen T. Comparison and clinical implementation of quality of life tools in patients with small bowel neuroendocrine tumors treated with Lu-DOTA-TATE PRRT. INTERNATIONAL JOURNAL OF ENDOCRINE ONCOLOGY 2019. [DOI: 10.2217/ije-2019-0003] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/21/2022] Open
Abstract
Aim: This study assesses if clinically developed quality of life (QoL) tools are as effective in small bowel neuroendocrine tumors (NETs) as NET-specific research questionnaires. Methods: QoL in patients with small bowel NETs treated with Lu-DOTA-TATE was assessed with The European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30, QLQ-GI.NET21 and Edmonton Symptom Assessment System Revised (ESAS-r) at baseline and after four treatments. Repeated measures ANOVA was performed. Results: Both EORTC and ESAS-r demonstrated maintained overall QoL. EORTC demonstrated statistically and clinically significant improvement in insomnia, diarrhea, gastrointestinal, endocrine symptoms and social function. ESAS-r demonstrated statistically and clinically significant improvement in overall total symptom distress score. Conclusion: ESAS-r is quick and easy to interpret. It is not as sensitive to individual symptoms but does track overall function. EORTC assessment is more complex, but better reflects QoL for NET specific symptoms.
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Affiliation(s)
| | - Stella Koumna
- Department of Oncology, University of Alberta, Edmonton, AB, T6G 2R3, Canada
| | - Marguerite Wieler
- Department of Physical Therapy, University of Alberta, Edmonton, AB, T6G 2R3, Canada
| | - Alexander McEwan
- Department of Oncology, University of Alberta, Edmonton, AB, T6G 2R3, Canada
| | - Todd McMullen
- Department of Surgery, University of Alberta, Edmonton, AB, T6G 2R3, Canada
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17
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Laing E, Kiss N, Michael M, Gough K, Krishnasamy M. Investigating Nutrition-Related Complications and Quality of Life in Patients With Gastroenteropancreatic Neuroendocrine Tumors: Protocol for a Mixed-Methods Prospective Study. JMIR Res Protoc 2018; 7:e11228. [PMID: 30567691 PMCID: PMC6315228 DOI: 10.2196/11228] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/05/2018] [Revised: 08/03/2018] [Accepted: 08/03/2018] [Indexed: 12/12/2022] Open
Abstract
Background Gastroenteropancreatic neuroendocrine tumors (GEP NETs) are a heterogeneous group of tumors with distinct effects on the body due to their potential to secrete hormones and peptides. The incidence and prevalence of GEP NETs in Australia are rising. During 2000-2006, the annual incidence was approximately 3.3 per 100,000 population. To date, there has been development of clinical practice and consensus guidelines for NETs covering best practice for diagnosis, treatment, and medical management; however, the supportive care needs and optimal nutritional management of patients affected by NETs remains underresearched, and evidence to guide clinical practice is lacking. While there is emerging research describing the extent of morbidity in different types of GEP NET patients, little is known about the experience of people affected by these tumors and how nutritional status is impacted by either diagnosis or treatment. Objective The objective of this study was to explore nutrition-related complications and quality of life of patients diagnosed with a GEP NET and to generate evidence to inform future research and development of nutrition screening and management practices. Methods Patients diagnosed with a GEP NET at two metropolitan recruitment sites will be invited to participate in a 6-month, mixed-methods longitudinal study. Participants recruited to the study will receive usual care and participate in data collection for the study at 4 time points (at recruitment and 2, 4, and 6 months postrecruitment). Study data will include nutritional status, body weight, fat-free mass, and patient-reported outcome measures (dietitian contact, disease-related symptom presence and severity, dietary habits, health-related quality of life, psychological morbidity, and financial impact). At recruitment and 6 months postrecruitment, complete nutrient testing, including relevant plasma vitamin levels, will also be undertaken. A purposive sample of participants will be invited to take part in semistructured interviews to explore the experience of living with a GEP NET and associated nutrition complications. Results Ethics approval has been obtained, and study recruitment and data collection are underway. Conclusions This study will provide the first in-depth, comprehensive description of nutritional issues in patients with GEP NETs. Results will advance the knowledge of nutritional issues faced by patients with GEP NETs and help inform the development of screening tools and clinical practice guidelines. International Registered Report Identifier (IRRID) DERR1-10.2196/11228
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Affiliation(s)
- Erin Laing
- Department of Nursing, University of Melbourne, Melbourne, Australia.,Nutrition and Dietetics Department, Peter MacCallum Cancer Centre, Melbourne, Australia
| | - Nicole Kiss
- Nutrition and Dietetics Department, Peter MacCallum Cancer Centre, Melbourne, Australia.,Institute of Physical Activity and Nutrition, School of Exercise and Nutrition Sciences, Deakin University, Geelong, Australia.,Department of Cancer Experiences Research, Peter MacCallum Cancer Centre, Melbourne, Australia
| | - Michael Michael
- Division of Cancer Medicine & Neuroendocrine Unit, Peter MacCallum Cancer Centre, Melbourne, Australia
| | - Karla Gough
- Department of Cancer Experiences Research, Peter MacCallum Cancer Centre, Melbourne, Australia
| | - Meinir Krishnasamy
- Department of Nursing, University of Melbourne, Melbourne, Australia.,Victorian Comprehensive Cancer Centre, Melbourne, Australia
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18
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Martini C, Buxbaum S, Rodrigues M, Nilica B, Scarpa L, Holzner B, Virgolini I, Gamper EM. Quality of Life in Patients with Metastatic Gastroenteropancreatic Neuroendocrine Tumors Receiving Peptide Receptor Radionuclide Therapy: Information from a Monitoring Program in Clinical Routine. J Nucl Med 2018; 59:1566-1573. [PMID: 30042164 DOI: 10.2967/jnumed.117.204834] [Citation(s) in RCA: 13] [Impact Index Per Article: 1.9] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/14/2017] [Accepted: 01/31/2018] [Indexed: 12/16/2022] Open
Abstract
In patients with metastatic gastroenteropancreatic neuroendocrine tumors (NETs), we evaluated health-related quality of life (HRQoL) from the first peptide receptor radionuclide therapy (PRRT) to the first restaging and compared the scores with general-population (GP) norms. Methods: The data were from routine HRQoL monitoring using the core quality-of-life questionnaire of the European Organization for Research and Treatment of Cancer (EORTC QLQ-C30). Patients received 4-6 cycles of 177Lu-DOTATATE or 90Y-DOTATOC. To be eligible for analysis, patients had to have at least one HRQoL assessment before PRRT and at least one HRQoL assessment at the end of or after treatment completion. Linear mixed models were used to consider HRQoL changes over time. Results: In total, 61 gastroenteropancreatic NET patients (small-intestine NETs, n = 37; pancreatic NETs, n = 24) were eligible for analysis. Clear improvements from baseline to the first restaging were found for diarrhea in small-intestine NET patients, showing a decrease of 16 points, which represents a moderately large change. We observed a clinically relevant decrease in appetite loss (17 points), but for female small-intestine NET patients only. Other HRQoL changes were also restricted to sociodemographic or clinical subgroups and mainly reflected improvements, except for physical and social functioning, which showed decreasing scores in older small-intestine NET patients. Compared with HRQoL GP norms, patients had impairments consisting of diarrhea; fatigue; appetite loss; reduced physical, social, and role functioning; and reduced global HRQoL. Except for diarrhea and appetite loss, patient scores at the first restaging did not reach GP levels. Conclusion: Our analyses support previous findings of overall stable HRQoL under PRRT. Yet, significant HRQoL impairments compared with the GP and potentially specific subgroup patterns need to be considered.
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Affiliation(s)
- Caroline Martini
- Department of Psychiatry, Psychotherapy, and Psychosomatics, Psychiatry I, Medical University of Innsbruck, Innsbruck, Austria
| | - Sabine Buxbaum
- Department of Nuclear Medicine, Medical University of Innsbruck, Innsbruck, Austria
| | - Margarida Rodrigues
- Department of Nuclear Medicine, Medical University of Innsbruck, Innsbruck, Austria
| | - Bernhard Nilica
- Department of Nuclear Medicine, Medical University of Innsbruck, Innsbruck, Austria
| | - Lorenza Scarpa
- Department of Nuclear Medicine, Medical University of Innsbruck, Innsbruck, Austria
| | - Bernhard Holzner
- Department of Psychiatry, Psychotherapy, and Psychosomatics, Psychiatry I, Medical University of Innsbruck, Innsbruck, Austria.,Department of Psychiatry, Psychotherapy and Psychosomatics, Psychiatry II, Medical University of Innsbruck, Innsbruck, Austria; and
| | - Irene Virgolini
- Department of Nuclear Medicine, Medical University of Innsbruck, Innsbruck, Austria
| | - Eva-Maria Gamper
- Innsbruck Institute of Patient-Centered Outcome Research (IIPCOR), Innsbruck, Austria
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19
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Symptoms, Psychosocial Factors, and Health-Related Quality of Life in Patients With Neuroendocrine Tumors. Cancer Nurs 2018; 42:E36-E46. [DOI: 10.1097/ncc.0000000000000614] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/07/2023]
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20
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Health-Related Quality of Life After Surgery for Small Intestinal Neuroendocrine Tumours. World J Surg 2018; 42:3231-3239. [DOI: 10.1007/s00268-018-4638-2] [Citation(s) in RCA: 9] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/13/2022]
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21
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Lewis AR, Wang X, Magdalani L, D’Arienzo P, Bashir C, Mansoor W, Hubner R, Valle JW, McNamara MG. Health-related quality of life, anxiety, depression and impulsivity in patients with advanced gastroenteropancreatic neuroendocrine tumours. World J Gastroenterol 2018; 24:671-679. [PMID: 29456406 PMCID: PMC5807670 DOI: 10.3748/wjg.v24.i6.671] [Citation(s) in RCA: 13] [Impact Index Per Article: 1.9] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/25/2017] [Revised: 12/11/2017] [Accepted: 12/20/2017] [Indexed: 02/06/2023] Open
Abstract
AIM To compare health-related quality of life (HRQoL), anxiety, depression, and impulsivity scores in patients with and without carcinoid syndrome (CS), and correlated them with serum 5-hydroxyindoleacetic acid (5-HIAA) levels.
METHODS Patients with advanced gastroenteropancreatic neuroendocrine tumours (GEPNET), with and without CS completed HRQoL QLQ-C30 and QLQ-GI.NET21, Hospital Anxiety and Depression Scale (HADS) and Barratt Impulsivity Scale (BIS) questionnaires. Two-sample Wilcoxon test was applied to assess differences in serum 5-HIAA levels, two-sample Mann-Whitney U test for HRQoL and BIS, and proportion test for HADS, between those with and without CS.
RESULTS Fifty patients were included; 25 each with and without CS. Median 5-HIAA in patients with and without CS was 367nmol/L and 86nmol/L, respectively (P = 0.003). Scores related to endocrine symptoms were significantly higher amongst patients with CS (P = 0.04) and scores for disease-related worries approached significance in the group without CS, but no other statistically-significant differences were reported between patients with and without CS in responses on QLQ-C30 or QLQ-GI.NET21. Fifteen patients (26%) scored ≥ 8/21 on anxiety scale, and 6 (12%) scored ≥ 8/21 on depression scale. There was no difference in median 5-HIAA between those scoring < or ≥ 8/21 on anxiety scale (P = 0.53). There were no statistically significant differences between groups in first or second-order factors (BIS) or total sum (P = 0.23).
CONCLUSION Excepting endocrine symptoms, there were no significant differences in HRQoL, anxiety, depression or impulsivity between patients with advanced GEPNET, with or without CS. Over one quarter of patients had high anxiety scores, unrelated to peripheral serotonin metabolism.
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Affiliation(s)
- Alexandra R Lewis
- Department of Medical Oncology, The Christie NHS Foundation Trust, Manchester M20 4BX, United Kingdom
| | - Xin Wang
- Department of Biostatistics, The Christie NHS Foundation Trust, Manchester M20 4BX, United Kingdom
| | - Laurice Magdalani
- Department of Medical Oncology, The Christie NHS Foundation Trust, Manchester M20 4BX, United Kingdom
| | - Paolo D’Arienzo
- Division of Medical Sciences, Scuola Superiore Sant’Anna, Pisa 56127, Italy
| | - Colsom Bashir
- Department of Clinical Psychology, The Christie NHS Foundation Trust, Manchester M20 4BX, United Kingdom
| | - Was Mansoor
- Department of Medical Oncology, The Christie NHS Foundation Trust, Manchester M20 4BX, United Kingdom
| | - Richard Hubner
- Department of Medical Oncology, The Christie NHS Foundation Trust, Manchester M20 4BX, United Kingdom
| | - Juan W Valle
- Department of Medical Oncology, The Christie NHS Foundation Trust, Manchester M20 4BX, United Kingdom
- Division of Cancer Sciences, University of Manchester, Manchester M20 4BX, United Kingdom
| | - Mairéad G McNamara
- Department of Medical Oncology, The Christie NHS Foundation Trust, Manchester M20 4BX, United Kingdom
- Division of Cancer Sciences, University of Manchester, Manchester M20 4BX, United Kingdom
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Karppinen N, Lindén R, Sintonen H, Tarkkanen M, Roine R, Heiskanen I, Matikainen N, Schalin-Jäntti C. Health-Related Quality of Life in Patients with Small Intestine Neuroendocrine Tumors. Neuroendocrinology 2018; 107:366-374. [PMID: 30293074 DOI: 10.1159/000494293] [Citation(s) in RCA: 12] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/16/2018] [Accepted: 10/02/2018] [Indexed: 01/09/2023]
Abstract
BACKGROUND The prevalence of small intestine neuroendocrine tumors (SI-NETs) is increasing. Disease progression is often slow and treatment options and long-term survival rates have improved, but little is known about health-related quality of life (HRQoL) in these patients. OBJECTIVE To assess HRQoL and its predictors in SI-NET patients receiving contemporary treatments. METHODS We measured HRQoL with 15D and SF-36 questionnaires in 134 SI-NET patients and compared the 15D results to those of an age- and gender-standardized sample of the general population (n = 1,153). In the patients, we studied the impact of treatments, Ki-67, liver metastases, circulating tumor markers, comorbidities, and/or socioeconomic factors on HRQoL with linear regression analysis. RESULTS The mean disease duration of the patients was 81 (4-468) months, 91% had metastatic disease, and 79% received somatostatin analog treatment. Hepatic tumor load was 0% in 44.8%, < 10-25% in 44.0%, and > 25% in 11.2%, respectively. Mean fP-CgA and S-5HIAA concentrations were 15 (1.3-250) and 344 (24-7,470) nmol/L, respectively. Overall, HRQoL was significantly impaired in patients compared to controls (15D score 0.864 ± 0.105 vs. 0.905 ± 0.028, p < 0.001). SI-NET patients scored worse on 9 of 15 dimensions: sleep, excretion (i.e., bladder and bowel function), depression, distress, vitality, sexual activity (p < 0.001), breathing, usual activities, and discomfort and symptoms (p < 0.01-0.05). SF-36 scores were impaired and highly correlated with 15D scores (p < 0.001). HRQoL was impaired in patients with (n = 85) compared to patients without (n = 49) impaired excretion (0.828 vs. 0.933, p < 0.001). In the patient group, number of medications predicted impaired HRQoL. CONCLUSIONS Despite contemporary treatments, SI-NET patients have severely impaired HRQoL, including diarrhea, sleep, depression, vitality, and sexual activity.
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Affiliation(s)
- Noora Karppinen
- Endocrinology, Abdominal Center, Helsinki University Hospital, University of Helsinki, Helsinki, Finland
| | - Riikka Lindén
- Department of Radiology, HUS Medical Imaging Centre, Helsinki University Hospital, University of Helsinki, Helsinki, Finland
| | - Harri Sintonen
- Department of Public Health, University of Helsinki, Helsinki, Finland
| | - Maija Tarkkanen
- Comprehensive Cancer Center, Helsinki University Hospital, University of Helsinki, Helsinki, Finland
| | - Risto Roine
- Group Administration, Helsinki University Hospital, University of Helsinki, Helsinki, Finland
- Department of Health and Social Management, Research Centre for Comparative Effectiveness and Patient Safety, University of Eastern Finland and Kuopio University Hospital, Kuopio, Finland
| | - Ilkka Heiskanen
- Endocrine Surgery, Abdominal Center, Helsinki University Hospital, University of Helsinki, Helsinki, Finland
| | - Niina Matikainen
- Endocrinology, Abdominal Center, Helsinki University Hospital, University of Helsinki, Helsinki, Finland
| | - Camilla Schalin-Jäntti
- Endocrinology, Abdominal Center, Helsinki University Hospital, University of Helsinki, Helsinki,
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23
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Shi DD, Yuppa DP, Dutton T, Brais LK, Minden SL, Braun IM, Kulke MH, Chan JA, Meyer FL. Retrospective review of serotonergic medication tolerability in patients with neuroendocrine tumors with biochemically proven carcinoid syndrome. Cancer 2017; 123:2735-2742. [PMID: 28267211 DOI: 10.1002/cncr.30633] [Citation(s) in RCA: 13] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/27/2016] [Revised: 01/21/2017] [Accepted: 01/25/2017] [Indexed: 12/29/2022]
Abstract
BACKGROUND Patients with carcinoid tumors frequently could benefit from the pharmacologic treatment of depression and anxiety. However, many prescribers avoid serotonergic medications due to the theoretical risk of exacerbating carcinoid syndrome. METHODS The authors conducted a retrospective chart review of patients with carcinoid tumors and elevated serotonin levels (as measured by 24-hour urine 5-hydroxyindoleacetic acid [5-HIAA]) at Dana-Farber/Brigham and Women's Cancer Center who initiated treatment with serotonergic antidepressants after a carcinoid diagnosis from 2003 to 2016. Each medication regimen was categorized based on the presence of adverse interactions as defined by clinical worsening of symptoms of carcinoid syndrome in the absence of progressive disease that temporally correlated with a serotonergic medication trial. RESULTS A total of 73 serotonergic regimens received by 52 patients were included in the primary analysis. Among these medication trials, 8.2% of the regimens (6 regimens) were categorized as being associated with a likely adverse interaction, 61.6% of the regimens (45 regimens) were categorized as having no adverse reaction, 9.6% of the regimens (7 regimens) were categorized as an unlikely adverse reaction, and 20.6% of the regimens (15 regimens) were categorized as unknown. It is interesting to note that none of the 73 trials resulted in a carcinoid crisis requiring emergency care or hospitalization. Only 3 patients discontinued serotonergic medications due to worsening carcinoid syndrome. CONCLUSIONS Serotonergic medications appear to be a safe option for the treatment of depressive and anxiety symptoms in the majority of patients with neuroendocrine tumors and carcinoid syndrome. In the current study, <10% of patients developed a combination of flushing, diarrhea, and bloating after the initiation of serotonergic medications. Clinicians can begin with low doses, monitor these symptoms, and reduce the dose or discontinue the medication if necessary. Cancer 2017;123:2735-42. © 2017 American Cancer Society.
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Affiliation(s)
- Diana D Shi
- Harvard Medical School, Boston, Massachusetts
| | - David P Yuppa
- Harvard Medical School, Boston, Massachusetts.,Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts.,Department of Psychiatry, Brigham and Women's Hospital, Boston, Massachusetts
| | - Trevor Dutton
- Center for Gastrointestinal Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts
| | - Lauren K Brais
- Center for Gastrointestinal Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts
| | - Sarah L Minden
- Harvard Medical School, Boston, Massachusetts.,Department of Psychiatry, Brigham and Women's Hospital, Boston, Massachusetts
| | - Ilana M Braun
- Harvard Medical School, Boston, Massachusetts.,Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts.,Department of Psychiatry, Brigham and Women's Hospital, Boston, Massachusetts
| | - Matthew H Kulke
- Harvard Medical School, Boston, Massachusetts.,Center for Gastrointestinal Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts
| | - Jennifer A Chan
- Harvard Medical School, Boston, Massachusetts.,Center for Gastrointestinal Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts
| | - Fremonta L Meyer
- Harvard Medical School, Boston, Massachusetts.,Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts.,Department of Psychiatry, Brigham and Women's Hospital, Boston, Massachusetts
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24
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Martini C, Gamper EM, Wintner L, Nilica B, Sperner-Unterweger B, Holzner B, Virgolini I. Systematic review reveals lack of quality in reporting health-related quality of life in patients with gastroenteropancreatic neuroendocrine tumours. Health Qual Life Outcomes 2016; 14:127. [PMID: 27614762 PMCID: PMC5018190 DOI: 10.1186/s12955-016-0527-2] [Citation(s) in RCA: 32] [Impact Index Per Article: 3.6] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/22/2016] [Accepted: 09/02/2016] [Indexed: 12/13/2022] Open
Abstract
BACKGROUND Gastroenteropancreatic neuroendocrine tumours (GEP-NET) are often slow-growing and patients may live for years with metastasised disease. Hence, along with increasing overall and progression-free survival, treatments aim at preserving patients' well-being and health-related quality of life (HRQoL). However, studies on systematic HRQoL assessment in patients with GEP-NET are scarce. Therefore, the purpose of the current review is to systematically evaluate the methodological quality of the identified studies. METHODS A targeted database search was performed in PubMed, EMBASE, and CENTRAL. Data extraction was conducted by two independent researchers according to predefined criteria. For study evaluation, the Minimum Standard Checklist for Evaluating HRQoL Outcomes in Cancer Clinical Trials and the CONSORT Patient-Reported Outcome extension were adapted. RESULTS The database search yielded 48 eligible studies. We found the awareness for the need of HRQoL measurement to be growing and application of cancer-specific instruments gaining acceptance. Overall, studies were too heterogeneous in terms of patient characteristics and treatment interventions to draw clear conclusions for clinical practice. More importantly, a range of methodological shortcomings has been identified which were mainly related to the assessment and statistical analysis, as well as the reporting and interpretation of HRQoL data. CONCLUSION Despite an increasing interest in HRQoL in GEP-NET patients, there is still a lack of knowledge on this issue. A transfer of HRQoL results into clinical practice is hindered not only by the scarceness of studies, but also by the often limited quality of HRQoL processing and reporting.
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Affiliation(s)
- Caroline Martini
- Department for Psychiatry, Psychotherapy and Psychosomatics, Medical University of Innsbruck, Anichstraße 35, 6020, Innsbruck, Austria
| | - Eva-Maria Gamper
- Department for Psychiatry, Psychotherapy and Psychosomatics, Medical University of Innsbruck, Anichstraße 35, 6020, Innsbruck, Austria.
- Department for Nuclear Medicine, Medical University of Innsbruck, Anichstraße 35, 6020, Innsbruck, Austria.
| | - Lisa Wintner
- Department for Psychiatry, Psychotherapy and Psychosomatics, Medical University of Innsbruck, Anichstraße 35, 6020, Innsbruck, Austria
| | - Bernhard Nilica
- Department for Nuclear Medicine, Medical University of Innsbruck, Anichstraße 35, 6020, Innsbruck, Austria
| | - Barbara Sperner-Unterweger
- Department for Psychiatry, Psychotherapy and Psychosomatics, Medical University of Innsbruck, Anichstraße 35, 6020, Innsbruck, Austria
| | - Bernhard Holzner
- Department for Psychiatry, Psychotherapy and Psychosomatics, Medical University of Innsbruck, Anichstraße 35, 6020, Innsbruck, Austria
| | - Irene Virgolini
- Department for Nuclear Medicine, Medical University of Innsbruck, Anichstraße 35, 6020, Innsbruck, Austria
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25
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Ruszniewski P, Valle JW, Lombard-Bohas C, Cuthbertson DJ, Perros P, Holubec L, Delle Fave G, Smith D, Niccoli P, Maisonobe P, Atlan P, Caplin ME. Patient-reported outcomes with lanreotide Autogel/Depot for carcinoid syndrome: An international observational study. Dig Liver Dis 2016; 48:552-558. [PMID: 26917486 DOI: 10.1016/j.dld.2015.12.013] [Citation(s) in RCA: 41] [Impact Index Per Article: 4.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/30/2015] [Revised: 12/18/2015] [Accepted: 12/22/2015] [Indexed: 12/11/2022]
Abstract
BACKGROUND Lanreotide Autogel/Depot effectively controls symptoms in patients with carcinoid syndrome associated with neuroendocrine tumours. Data on patient-reported outcomes are sparse. AIM To evaluate the effect of lanreotide on patient-reported outcomes (PROs) with carcinoid syndrome. METHODS This was an international, open-label, observational study of adults with neuroendocrine tumours and history of diarrhoea, receiving lanreotide for >3 months for relief of carcinoid syndrome symptoms. The primary PRO measure was satisfaction with diarrhoea control. Secondary PRO measures included severity, change in symptoms and impact on daily life of diarrhoea; and patient satisfaction with flushing control. RESULTS Of 273 patients enrolled, 76% were 'completely' or 'rather' satisfied with diarrhoea control; 79% reported improvement in diarrhoea with lanreotide. The proportion of patients with 'mild', 'minimal', or 'no diarrhoea' increased from 33% before treatment to 75% during treatment; 75% were unconcerned about the impact of diarrhoea on daily life. Satisfaction with flushing control amongst patients with significant flushing at treatment initiation was 73%. CONCLUSIONS Lanreotide treatment was associated with improvements in symptoms as well as a range of PROs in patients with neuroendocrine tumours and carcinoid syndrome (ClinicalTrials.gov: NCT01234168).
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Affiliation(s)
| | - Juan W Valle
- Institute of Cancer Studies, University of Manchester/The Christie NHS Foundation Trust, Manchester, UK
| | | | - Daniel J Cuthbertson
- Department of Obesity and Endocrinology and Liverpool ENETS Centre of Excellence, University Hospital Aintree and University of Liverpool, Liverpool, UK
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26
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Health-related quality of life in well-differentiated metastatic gastroenteropancreatic neuroendocrine tumors. Cancer Metastasis Rev 2015; 34:381-400. [DOI: 10.1007/s10555-015-9573-1] [Citation(s) in RCA: 35] [Impact Index Per Article: 3.5] [Reference Citation Analysis] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/16/2022]
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27
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Abstract
OBJECTIVES To evaluate the cognitive performance of patients with carcinoid syndrome (CS) compared with population norms and cancer patients with non-neuroendocrine (non-NET) liver metastases. BACKGROUND The release of serotonin into the systemic circulation from metastatic small bowel neuroendocrine tumors (SB NET) causes CS. Many patients with CS followed in a multidisciplinary NET clinic seemed to exhibit a unique cognitive impairment. Because serotonin is known to influence a range of cognitive function, the question arouse as to whether cognitive impairment is another manifestation of CS. METHODS Patients were recruited from the multidisciplinary NET and the hepatobilary cancer clinics at the cancer center. The CS group consisted of patients with proven SB NETs metastatic to liver; the cancer comparison group consisted of patients with liver metastases from non-NET cancer. All completed a self-reported cognitive questionnaire and a battery of 6 standardized neurocognitive tests. Both groups were compared to age/sex/educational-matched norms. RESULTS Thirty-six patients with CS and 20 with non-NET metastases were enrolled. Patients with CS reported greater cognitive dysfunction in all cognitive domains than both norms and the comparison cancer group. On cognitive testing, patients with CS demonstrated weakness in initiation, processing speed, visual memory, cognitive efficiency, and delayed verbal recall compared with norms. Although the patients with non-NET cancer also demonstrated some cognitive dysfunction compared with norms, the patients with CS did significantly worse on delayed recall (P = 0.03) and marginally slower on speeded mental flexibility (P = 0.097) compared with patients with non-NET cancer. CONCLUSION This study confirmed our clinical observation that patients with CS suffer from cognitive impairment that is different from the non-NET cancer group and population norms.
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28
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Chau I, Casciano R, Willet J, Wang X, Yao JC. Quality of life, resource utilisation and health economics assessment in advanced neuroendocrine tumours: a systematic review. Eur J Cancer Care (Engl) 2013; 22:714-25. [PMID: 23895457 PMCID: PMC4208687 DOI: 10.1111/ecc.12085] [Citation(s) in RCA: 32] [Impact Index Per Article: 2.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 05/22/2013] [Indexed: 12/13/2022]
Abstract
Neuroendocrine tumours (NET) are often diagnosed at an advanced stage when the prognosis is poor for patients, who often experience diminished quality of life (QoL). As new treatments for NET become available, it is important to characterise the associated outcomes, costs and QoL. A comprehensive search was performed to systematically review available data in advanced NET regarding cost of illness/resource utilisation, economic studies/health technology assessment and QoL. Four rounds of sequential review narrowed the search results to 22 relevant studies. Most focused on surgical procedures and diagnostic tools and contained limited information on the costs and consequences of medical therapies. Multiple tools are used to assess health-related QoL in NET, but few analyses have been conducted to assess the comparative impact of available treatment alternatives on QoL. Limitations include English language and the focus on advanced NET; ongoing terminology and classification changes prevented pooled statistical analyses. This systematic review suggests a lack of comparative economic and outcomes data associated with NET treatments. Further research on disease costs, resource utilisation and QoL for patients with advanced NET is warranted.
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Affiliation(s)
- I Chau
- The Royal Marsden HospitalLondon, UK
- Correspondence to: Ian Chau, Department of Medicine, Royal Marsden Hospital, Downs Road, Sutton, Surrey SM2 5PT, UK (e-mail: )
| | | | - J Willet
- LA-SER AnalyticaNew York, New York, USA
| | - X Wang
- Novartis OncologyFlorham Park, New Jersey, USA
| | - JC Yao
- The University of Texas MD Anderson Cancer CenterHouston, Texas, USA
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Vinik AI, Raymond E. Pancreatic neuroendocrine tumors: approach to treatment with focus on sunitinib. Therap Adv Gastroenterol 2013; 6:396-411. [PMID: 24003340 PMCID: PMC3756637 DOI: 10.1177/1756283x13493878] [Citation(s) in RCA: 26] [Impact Index Per Article: 2.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/06/2023] Open
Abstract
Pancreatic neuroendocrine tumors (pNETs) are relatively rare malignancies. With secretory tumors such as insulinomas, vasoactive intestinal peptideomas, and gastrinomas, the hormone produced causes the symptom complex (e.g. hypoglycemia, peptic ulcer disease). With nonsecretory NETs, the clinical condition is determined by tumoral growth and metastasis. The course of metastatic pNETs may be indolent for several years but progression is often more rapid at later stages, leading to significant disability and a markedly negative impact on quality of life. Until recently, there were few effective systemic treatments for pNETs. Standard chemotherapy produces limited responses and has considerable toxicity. Somatostatin analogues control symptoms in some types of pNETs, but have not yet demonstrated antitumor activity. The recent introduction of targeted therapies, including the tyrosine kinase inhibitor sunitinib and the mammalian target of rapamycin inhibitor everolimus, yielded new opportunities for patients with advanced/metastatic pNETs. These drugs, which target key pathways in tumor proliferation and angiogenesis, provided clear clinical benefits in phase III clinical trials, including delayed tumor progression. The pivotal sunitinib phase III trial was discontinued prematurely due to higher rates of death and serious adverse events with placebo and greater progression-free survival (PFS) with sunitinib. In this trial, sunitinib demonstrated encouraging long-term responses as well as PFS and overall survival benefits, and an acceptable safety profile that allowed patients to preserve their quality of life. In every patient subgroup, including secretory and nonsecretory tumors, the hazard ratio for progression or death favored sunitinib. Circulating biomarkers are being investigated for the prediction and monitoring of responses to sunitinib. Although not fully evaluated in pNETs, biomarkers associated with response to sunitinib in several tumor types include soluble vascular endothelial growth factor receptor 2 and 3, interleukin 8, and stromal cell-derived factor 1α. Based on recent data, treatment algorithms have been updated for advanced and metastatic pNETs.
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Affiliation(s)
- Aaron I. Vinik
- Director of Research and Neuroendocrine Unit, EVMS Strelitz Diabetes Research Center, Eastern Virginia Medical School, 855 West Brambleton Avenue, Norfolk, VA 23510-1001, USA
| | - Eric Raymond
- Beaujon University Hospital, Assistance Publique, Hôpitaux de Paris, Clichy, France
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30
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Improvement in Stress, General Self-Efficacy, and Health Related Quality of Life following Patient Education for Patients with Neuroendocrine Tumors: A Pilot Study. Nurs Res Pract 2013; 2013:695820. [PMID: 23738063 PMCID: PMC3655647 DOI: 10.1155/2013/695820] [Citation(s) in RCA: 16] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/12/2012] [Revised: 02/01/2013] [Accepted: 03/30/2013] [Indexed: 02/06/2023] Open
Abstract
The purpose of the study was to evaluate changes in general self-efficacy, health related quality of life (HRQoL), and stress among patients with neuroendocrine tumors (NET) following a multidisciplinary educational intervention. Forty-one patients were enrolled in this exploratory pilot study. A total of 37 patients completed the full 26-week intervention based on the principles of self-efficacy. General self-efficacy was measured by the General Self-Efficacy Scale, HRQoL was measured with the SF-36, and stress was measured with the Impact of Event Scale. Mixed effect models were used to evaluate changes in general self-efficacy, mental and physical components of HRQoL, and stress adjusting for demographic and clinical variables. Results showed significant improvements in patients' general self-efficacy (β = 0.71; P < 0.05), physical component scores of HRQoL (β = 3.09; P < 0.01), and stress (β = −2.10, P = 0.008). Findings suggest that patients with NET have the capacity to improve their ability to cope with their disease, problem-solve, improve their physical status, and reduce their stress following an educational intervention based on the principles of self-efficacy. These preliminary data provide a basis for future randomized controlled trials to test interventions to improve HRQoL for patients with NET.
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31
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Validation of the EORTC QLQ-GINET21 questionnaire for assessing quality of life of patients with gastrointestinal neuroendocrine tumours. Br J Cancer 2013; 108:301-10. [PMID: 23322194 PMCID: PMC3566824 DOI: 10.1038/bjc.2012.560] [Citation(s) in RCA: 85] [Impact Index Per Article: 7.1] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/18/2022] Open
Abstract
Background: Quality of life is an important end point in clinical trials, yet there are few quality of life questionnaires for neuroendocrine tumours. Methods: This international multicentre validation study assesses the QLQ-GINET21 Quality of Life Questionnaire in 253 patients with gastrointestinal neuroendocrine tumours. All patients were requested to complete two quality of life questionnaires – the EORTC Core Quality of Life questionnaire (QLQ-C30) and the QLQ-GINET21 – at baseline, and at 3 and 6 months post-baseline; the psychometric properties of the questionnaire were then analysed. Results: Analysis of QLQ-GINET21 scales confirmed appropriate aggregation of the items, except for treatment-related symptoms, where weight gain showed low correlation with other questions in the scale; weight gain was therefore analysed as a single item. Internal consistency of scales using Cronbach's α coefficient was >0.7 for all parts of the QLQ-GINET21 at 6 months. Intraclass correlation was >0.85 for all scales. Discriminant validity was confirmed, with values <0.70 for all scales compared with each other. Scores changed in accordance with alterations in performance status and in response to expected clinical changes after therapies. Mean scores were similar for pancreatic and other tumours. Conclusion: The QLQ-GINET21 is a valid and responsive tool for assessing quality of life in the gut, pancreas and liver neuroendocrine tumours.
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32
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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. Pancreas 2012; 41:461-6. [PMID: 22422138 DOI: 10.1097/mpa.0b013e3182328045] [Citation(s) in RCA: 136] [Impact Index Per Article: 10.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/31/2022]
Abstract
OBJECTIVE The objective of this study was to evaluate the health-related quality of life (HRQL) burden of patients with neuroendocrine tumor (NET) and associations with demographic and clinical factors. METHODS Patients with NET were invited to participate in an online, anonymous survey consisting of 2 standardized HRQL measures, SF-36 and PROMIS-29, and a set of demographic and disease-related questions. General linear models were used to evaluate the associations between HRQL and demographic and clinical characteristics. RESULTS A total of 663 patients participated. These patients with NET demonstrated worse HRQL scores compared to the general population and to a sample of mixed cancer patients and survivors. Patients with current NET (tumor not surgically removed or came back after surgery), carcinoid syndrome, or an increased number of bowel movements or flushing episodes experience worsened HRQL compared to patients with NET without those characteristics after adjustment for other clinical and demographic variables. CONCLUSIONS Patients with NET reported worse HRQL scores compared to the general population. NET-related symptoms such as diarrhea and flushing were associated with reduced quality of life in this cross-sectional study. Optimal management of NET and carcinoid syndrome may significantly improve HRQL among patients with NETs.
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Khan S, Krenning EP, van Essen M, Kam BL, Teunissen JJ, Kwekkeboom DJ. Quality of Life in 265 Patients with Gastroenteropancreatic or Bronchial Neuroendocrine Tumors Treated with [177Lu-DOTA0,Tyr3]Octreotate. J Nucl Med 2011; 52:1361-8. [DOI: 10.2967/jnumed.111.087932] [Citation(s) in RCA: 134] [Impact Index Per Article: 9.6] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/16/2022] Open
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Impairment of cognitive function reported by patients suffering from carcinoid syndrome. World J Surg 2010; 34:1356-60. [PMID: 20127244 DOI: 10.1007/s00268-010-0404-9] [Citation(s) in RCA: 11] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/19/2022]
Abstract
BACKGROUND Carcinoid syndrome (CS) is characterized by symptoms of diarrhea, flushing, bronchospasm, and valvular heart disease. It has been our impression that patients with CS also exhibit features of cognitive impairment. The purpose of this pilot study was to evaluate if symptoms of cognitive impairment were reported by patients with CS. METHODS Patients with proven CS completed a 38-question multiple-ability self-report questionnaire (MASQ) to assess symptoms in five cognitive domains: language skills, attention/concentration (A/C), visual-perceptual function, visual memory, and verbal memory. Patients subsequently underwent neurocognitive assessment using a battery of six standardized tests. Results of the MASQ and the cognitive test were compared to published results for healthy individuals. RESULTS Twenty-one patients with CS were studied. MASQ symptom scores were higher than published norms in all five cognitive domains. Patients reported greatest difficulty with verbal memory (mean +/- SD = 2.74 +/- 0.5), followed by A/C (2.41 +/- 0.65), language (2.31 +/- 0.55), visual memory (2.30 +/- 0.65), and visual-perceptual function (2.17 +/- 0.59). In contrast, neurocognitive tests for verbal memory immediate recall, visual memory, language, and executive function were within the normal range. CS patients, however, scored lower than expected in tests of verbal memory delayed recall and visual-perceptual function. CONCLUSIONS Patients with CS report high levels of symptoms of impairment in all cognitive domains; however, on formal neurocognitive testing, patients scored lower than expected only in tests of verbal memory delayed recall and visual-perceptual function. These findings appear to confirm our clinical impression that cognitive impairment may be an additional feature of CS. Further studies are needed to confirm and elucidate the cause of this cognitive impairment.
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35
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Zenger M, Lehmann-Laue A, Stolzenburg JU, Schwalenberg T, Ried A, Hinz A. The relationship of quality of life and distress in prostate cancer patients compared to the general population. PSYCHO-SOCIAL MEDICINE 2010; 7:Doc02. [PMID: 20628652 PMCID: PMC2899861 DOI: 10.3205/psm000064] [Citation(s) in RCA: 12] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Indexed: 01/11/2023]
Abstract
Background: The aim of this study is two-fold. The first part compares quality of life (QoL) data of prostate cancer patients with those of a representative and age-specific sample of the general population and analyzes the influence of cancer related as well as socio-demographic parameters on QoL. Secondly, differences in QoL depending on the experienced psychological distress will be shown both in prostate cancer patients and in the general population. Material and Methods: A sample of 265 prostate cancer patients completed both the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) and the Hospital Anxiety and Depression Scale (HADS) during their stay in the hospital. A total HADS cut off score of 15 was used to indicate psychological distress and significant emotional concerns in patients and men of the general population. The results of the patients were compared with those of the general population (N=444). Results: Prostate cancer patients reported significantly worse levels of social and emotional functioning as well as more symptoms like insomnia, constipation and diarrhea compared to the general population. Patients and men of the general population with a total HADS score ≥15 reported lower QoL in all sub-scales except for diarrhea in comparison to people without distress. Discussion: Psychological distress is accompanied by lower QoL and therefore should be taken into consideration when QoL is assessed. Furthermore, clinicians should be trained by professionals to detect distress in their patients and to pay more attention to their emotional concerns, which are strongly associated with the patients’ well-being and QoL during their stay in hospital.
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Affiliation(s)
- Markus Zenger
- Department of Medical Psychology and Medical Sociology, University of Leipzig, Germany
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Abstract
BACKGROUND Patients with ileal endocrine tumors have a good survival rate. AIM To assess the quality of life of patients with endocrine tumors of the ileum. PATIENTS Forty-four consecutive patients (30 males, 14 females, mean age 61.1 years, range 26-79) with proven endocrine tumor of the ileum were studied. METHODS Italian version of the SF-12 Health Survey (SF-12) questionnaire able to explore the physical and mental aspects of daily life were used. Forty-four sex-matched and age-matched Italian normative participants were also considered for SF-12 evaluation. RESULTS The overall analysis of the SF-12 questionnaire in the 44 patients showed values of physical component summary (PCS) and mental component summary (MCS) scores representative of a relatively good quality of life and not significantly different from those of the normative population (PCS: 46.5+/-10.3 vs. 47.0+/-4.7, P = 0.792; MCS: 45.9+/-10.8 vs. 49.1+/-2.0, P = 0.057). PCS was significantly impaired in nonsmokers (P = 0.028), in those who underwent less invasive surgery (P = 0.007), in those who had pain at onset of the disease (P = 0.002), and in those who received multimodality treatment (P = 0.013). To evaluate the factors independently related to PCS, a multivariate analysis was performed and we found that specific surgery (P = 0.046) and presence of pain at onset of the disease (P = 0.001) were the only two factors that showed an independent relationship with PCS. CONCLUSION The patients with endocrine tumor of the ileum seem to perceive their quality of life as relatively good.
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Pezzilli R, Campana D, Morselli-Labate AM, Fabbri MC, Brocchi E, Tomassetti P. Patient-reported outcomes in subjects with neuroendocrine tumors of the pancreas. World J Gastroenterol 2009; 15:5067-73. [PMID: 19860000 PMCID: PMC2768886 DOI: 10.3748/wjg.15.5067] [Citation(s) in RCA: 27] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/06/2023] Open
Abstract
AIM: To assess the patient-reported outcomes (PROs) of pancreatic neuroendocrine tumor (PNET) patients.
METHODS: Fifty-one consecutive patients (21 male, 30 female, 61.0 ± 10.3 years) with proven PNETs were studied. An SF-12 questionnaire capable of exploring the physical (PCS) and mental (MCS) aspects of daily life was used. Four questionnaires were also used [12 items General Health Questionnaire (GHQ-12) for non-psychotic psychiatric disorders, State Trait Anxiety Inventory (STAI) Y-1 and Y-2 for anxiety and BDI-II for depressive symptoms] to explore the psychological aspects of the disease. Forty-four sex- and age-matched Italian normative subjects were included and evaluated using the SF-12, STAI Y-1 and Y-2 questionnaires.
RESULTS: Seven patients refused to participate to the study; they were clinically similar to the 44 participants who agreed to complete the questionnaires. PNET patients had a PCS score (44.7 ± 11.0) were not significantly different from the norms (46.1 ± 9.9, P = 0.610), whereas the MCS score was significantly lower in patients (42.4 ± 13.0) as compared to the norms (48.2 ± 9.8, P = 0.036). GHQ-12 identified 11 patients (25.0%) as having non-psychotic psychiatric disorders. The STAI scores were similar in the patients and in the normative population. Finally, BDI-II identified eight patients (18.2%) with moderate depression and 9 (20.5%) with mild depression whereas 27 patients (61.4%) had no depression.
CONCLUSION: The PNET patients had a good physical but an impaired mental component of their quality of life; in addition, mild or moderate depressive symptoms are present in about 40% of PNET patients.
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Health related quality of life in patients with neuroendocrine tumors compared with the general Norwegian population. Qual Life Res 2009. [PMID: 19479341 DOI: 10.1007/s1113-009-9487-x] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Abstract] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/20/2022]
Abstract
PURPOSE Health related quality of life (HRQoL) was characterized among patients with neuroendocrine tumor (NET) and compared with the general Norwegian population. METHODS A cross sectional, comparative design was chosen, and the samples comprised 196 NET patients and 5,258 individuals from the general Norwegian population. We used Chi-square cross tab calculations to evaluate sociodemographic characteristics, T-tests for independent samples and Analysis of Variance (ANOVA) in order to compare HRQoL (SF-36) scores across a range of background variables. Furthermore, T-tests were used to analyze differences in HRQoL scores between the samples. RESULTS NET patients demonstrated significantly lower on all HRQoL subscales when compared with the general population with the lowest values on general health, physical limitation and vitality. Individuals above 70 years reported lower scores on physical functioning and physical limitations compared with those who were younger. Individuals with higher levels of education reported increased physical functioning compared with those with less education and full-time or part-time workers described higher physical functioning and less physical limitations compared with those who were retired. CONCLUSIONS All SF-36 HRQoL scores were significantly lower among the NET patients when compared with the general population. Assistance from health personnel to NET patients should focus on those domains.
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Haugland T, Vatn MH, Veenstra M, Wahl AK, Natvig GK. Health related quality of life in patients with neuroendocrine tumors compared with the general Norwegian population. Qual Life Res 2009; 18:719-26. [PMID: 19479341 DOI: 10.1007/s11136-009-9487-x] [Citation(s) in RCA: 49] [Impact Index Per Article: 3.1] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/25/2008] [Accepted: 04/29/2009] [Indexed: 12/23/2022]
Abstract
PURPOSE Health related quality of life (HRQoL) was characterized among patients with neuroendocrine tumor (NET) and compared with the general Norwegian population. METHODS A cross sectional, comparative design was chosen, and the samples comprised 196 NET patients and 5,258 individuals from the general Norwegian population. We used Chi-square cross tab calculations to evaluate sociodemographic characteristics, T-tests for independent samples and Analysis of Variance (ANOVA) in order to compare HRQoL (SF-36) scores across a range of background variables. Furthermore, T-tests were used to analyze differences in HRQoL scores between the samples. RESULTS NET patients demonstrated significantly lower on all HRQoL subscales when compared with the general population with the lowest values on general health, physical limitation and vitality. Individuals above 70 years reported lower scores on physical functioning and physical limitations compared with those who were younger. Individuals with higher levels of education reported increased physical functioning compared with those with less education and full-time or part-time workers described higher physical functioning and less physical limitations compared with those who were retired. CONCLUSIONS All SF-36 HRQoL scores were significantly lower among the NET patients when compared with the general population. Assistance from health personnel to NET patients should focus on those domains.
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Affiliation(s)
- Trude Haugland
- Medical Department, Rikshospitalet University Hospital HF, Oslo, Norway.
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40
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Bendelow J, Apps E, Jones L, Poston G. Carcinoid syndrome. Eur J Surg Oncol 2008; 34:289-96. [DOI: 10.1016/j.ejso.2007.07.202] [Citation(s) in RCA: 24] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/08/2007] [Accepted: 07/20/2007] [Indexed: 11/30/2022] Open
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41
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Fröjd C, Lampic C, Larsson G, Birgegård G, Essen LV. Patient attitudes, behaviours, and other factors considered by doctors when estimating cancer patients’ anxiety and desire for information. Scand J Caring Sci 2007; 21:523-9. [DOI: 10.1111/j.1471-6712.2007.00507.x] [Citation(s) in RCA: 10] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/27/2022]
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LARSSON G, VON ESSEN L, SJÖDÉN PO. Are importance–satisfaction discrepancies with regard to ratings of specific health-related quality-of-life aspects valid indicators of disease- and treatment-related distress among patients with endocrine gastrointestinal tumours? Eur J Cancer Care (Engl) 2007; 16:493-9. [DOI: 10.1111/j.1365-2354.2007.00781.x] [Citation(s) in RCA: 9] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/29/2022]
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43
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Fröjd C, Larsson G, Lampic C, von Essen L. Health related quality of life and psychosocial function among patients with carcinoid tumours. A longitudinal, prospective, and comparative study. Health Qual Life Outcomes 2007; 5:18. [PMID: 17428340 PMCID: PMC1852299 DOI: 10.1186/1477-7525-5-18] [Citation(s) in RCA: 73] [Impact Index Per Article: 4.1] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/18/2007] [Accepted: 04/11/2007] [Indexed: 12/25/2022] Open
Abstract
Background The aim was to investigate HRQoL and psychosocial function among patients with carcinoid tumours, longitudinally and prospectively, and to compare HRQoL among patients with carcinoid tumours to that of the Swedish general population. The aim was also to investigate the prevalence of distress during the first year after diagnosis. Methods At four assessments during the first year after diagnosis, HRQoL was measured by the EORTC QLQ-C30 3.0, anxiety and depression by the HADS, and prevalence, and worst aspects of distress by an interview guide. ANOVA was performed in order to study changes over time with regard to HRQoL, anxiety and depression. Comparisons regarding HRQoL between patients and the Swedish population were made by the use of one-sample t-tests and changes over time regarding the prevalence of distress was investigated by means of Cochran's Q. Results High levels of physical-, emotional-, cognitive-, and social function and somewhat lower levels of role function and global quality of life were reported at all assessments. Role- and emotional function increased over time. Patients reported lower role function and global quality of life and more problems with fatigue and diarrhoea than the Swedish general population, at all assessments. Fatigue, limitations to work and pursue daily activities, and worry that the illness will get worse were among the most prevalent aspects at all assessments. At all assessments the majority reported worrying about the family's situation, the ability to care for the family, and worrying before the check-up. Conclusion It is concluded that HRQoL and psychosocial function among patients with carcinoid tumours remains stable during the first year, that the patients report a lower HRQoL than the Swedish general population, and that a majority of the patients report a number of aspects of emotional distress. In the clinical care, it should be considered that the majority of patients report not only fatigue and diarrhoea but also worries about their prognosis, their families, tests, and examinations. Efforts to reduce these worries should be made.
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Affiliation(s)
- Camilla Fröjd
- Department of Public Health and Caring Sciences, Psychosocial oncology, Uppsala University, Uppsala, Sweden
| | - Gunnel Larsson
- Department of Medical Sciences, Uppsala University, Uppsala, Sweden
| | - Claudia Lampic
- Department of Public Health and Caring Sciences, Caring Sciences, Uppsala University, Uppsala, Sweden
- Department of Caring Sciences and Sociology, Gävle University, Sweden
| | - Louise von Essen
- Department of Public Health and Caring Sciences, Psychosocial oncology, Uppsala University, Uppsala, Sweden
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Davies AHG, Larsson G, Ardill J, Friend E, Jones L, Falconi M, Bettini R, Koller M, Sezer O, Fleissner C, Taal B, Blazeby JM, Ramage JK. Development of a disease-specific Quality of Life questionnaire module for patients with gastrointestinal neuroendocrine tumours. Eur J Cancer 2006; 42:477-84. [PMID: 16412628 DOI: 10.1016/j.ejca.2005.10.025] [Citation(s) in RCA: 55] [Impact Index Per Article: 2.9] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/29/2005] [Accepted: 10/31/2005] [Indexed: 12/19/2022]
Abstract
Quality of life (QoL) measurements are increasingly being used as an end point in cancer clinical trials. Standard generic QoL questionnaires may not assess symptoms produced by neuroendocrine tumours. Here we report the development of a disease-specific quality of life score questionnaire for patients with neuroendocrine tumours of the gut to supplement the EORTC core cancer questionnaire, the QLQ-C30. Phases 1-3 of the EORTC quality of life group guidelines for module development were used to design the new questionnaire. Forty-one relevant issues (questions) were generated after an extensive literature search. Following interviews of 15 health care workers and 35 patients, a 35 question provisional questionnaire was constructed. This was translated into seven European languages and pre-tested in 180 patients resulting in a 21-item module that will be validated in an international clinical trial. The EORTC QLQ-NET21 provides a site-specific module to supplement the QLQ-C30 for patients with neuroendocrine tumours.
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Affiliation(s)
- A H G Davies
- Institute of Liver Studies, Carcinoid Clinic, King's College Hospital, Denmark Hill, London SE5 9RS, UK.
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Simbera Z, Balon R. Carcinoid Tumor, Selective Serotonin Reuptake Inhibitors, and Diarrhea. PSYCHOSOMATICS 2005; 46:88-9. [PMID: 15765829 DOI: 10.1176/appi.psy.46.1.88-a] [Citation(s) in RCA: 11] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 11/30/2022]
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Tomassetti P, Migliori M, Campana D, Brocchi E, Piscitelli L, Salomone T, Corinaldesi R. Basis for treatment of functioning neuroendocrine tumours. Dig Liver Dis 2004; 36 Suppl 1:S35-41. [PMID: 15077910 DOI: 10.1016/j.dld.2003.11.012] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/11/2022]
Abstract
A general characteristic of GEP endocrine tumours is that vast majority produce and secrete a multitude of peptide hormones and amines. The rarity of these types of tumours, their possible episodic expression and the variable clinical symptoms, are the reasons why patients are often diagnosed late in the advanced stages of the disease. For these reasons, the patients with advanced metastatic disease should be treated aggressively with medical and surgical therapies aimed at reducing both symptoms and complications through strategies that reduce tumour bulk and block hormonal effects. The medical treatment of functioning endocrine tumours of the gastrointestinal tract must be based on the growth properties of the tumour and includes chemotherapy, somatostatin analogs, alpha-interferon alone and associated with somatostatin analogs, chemoembolization and radiolabelled somatostatin analogs. Even if chemotherapy has been basis of therapy for these types of tumours for a long time, it is currently reserved for progressive disease and anaplastic tumours. Biotherapy, with interferon and somatostatin analogs has been demonstrated to have a significant antitumor effect and causes an improvement of symptoms in patients with functioning neuroendocrine tumours. Furthermore, these drugs produce a notable improvement in the quality of life. Radioactive targeting therapy is the most promising new treatment modality for patients who have SST receptor positive tumours.
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Affiliation(s)
- P Tomassetti
- Department of Internal Medicine and Gastroenterology, St. Orsola Hospital, University of Bologna, 40138, Bologna, Italy.
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van der Horst-Schrivers ANA, Wymenga ANM, Links TP, Willemse PHB, Kema IP, de Vries EGE. Complications of midgut carcinoid tumors and carcinoid syndrome. Neuroendocrinology 2004; 80 Suppl 1:28-32. [PMID: 15477713 DOI: 10.1159/000080737] [Citation(s) in RCA: 30] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/19/2022]
Abstract
The carcinoid syndrome, associated with carcinoid tumors of the midgut, consists of symptoms such as diarrhea, flushing, wheezing and cardiovascular symptoms. This review focuses on these symptoms and discusses therapeutic options. The symptoms are caused by the secretion of biogenic amines, polypeptides and other factors of which serotonin is the most prominent. However, diarrhea is also due to factors such as malabsorption. Besides antitumor therapy, more specific interventions such as serotonin receptor blockers can be useful. The carcinoid heart disease involves the tricuspid and pulmonary valve. In the pathogenesis, serotonin plays a central role. The therapeutic approach is mostly symptomatic. Other cardiovascular complications include bowel ischemia and hypertension. Pellagra and psychiatric symptoms are due to a depletion of tryptophan, which is consumed by the carcinoid tumor for serotonin synthesis. Finally, follow-up and clinical practice of patients with carcinoid tumors are discussed.
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Bratt O, Emanuelsson M, Grönberg H. Psychological aspects of screening in families with hereditary prostate cancer. SCANDINAVIAN JOURNAL OF UROLOGY AND NEPHROLOGY 2003; 37:5-9. [PMID: 12745735 DOI: 10.1080/00365590310008604] [Citation(s) in RCA: 10] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 10/26/2022]
Abstract
OBJECTIVE Approximately 5-10% of prostate cancer cases are caused by dominantly inherited susceptibility to the disease. Although advances have been made in research concerning the genetic mechanisms of hereditary prostate cancer, little is known about the psychological consequences. The aim of this study was to assess possible negative psychological effects of screening for prostate cancer in a high-risk population. MATERIAL AND METHODS This study was based on a previous study of risk perception, screening practice and interest in genetic testing among unaffected men in families with hereditary prostate cancer. The present study included 87 men from the previous study who were screened regularly for prostate cancer. Of these, 74 men agreed to receive two further questionnaires, both of which included the Hospital Anxiety and Depression Scale (HAD) and the Impact of Event Scale (IES), one of which was filled in on the day of the next screening visit and the other 4-6 weeks later. RESULTS The response rate was 77% (57/74). There were no statistically significant differences in total or subscale HAD or IES scores between the two points of measurement. There was a trend towards slightly higher HAD scores on the day of the screening visit, but the difference was so small that we did not consider it clinically relevant. In an attempt to identify risk factors for a negative impact of screening several subgroup analyses were performed, but none of these subgroups had significantly higher scores on the day of the visit than afterwards. CONCLUSION Most men with a high hereditary risk of developing prostate cancer do not experience severe psychological adverse effects resulting from attendance for screening.
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Affiliation(s)
- Ola Bratt
- Unit for Urology, Helsingborg Hospital, Helsingborg, Sweden.
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