Health related quality of life in patients with neuroendocrine tumors compared with the general Norwegian population

Haugland, Trude; Vatn, Morten H.; Veenstra, Marijke; Wahl, Astrid Klopstad; Natvig, Gerd Karin

doi:10.1007/s11136-009-9487-x

Cited by 51 publications

(43 citation statements)

References 27 publications

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“…Although validated HRQoL assessment tools were not used in this survey, the findings are consistent with previously conducted surveys in Norway and the United States, which reported worse HRQoL scores in patients with NETs versus the general population, as expected. 19,20 A previous US survey of cancer survivors also reported poorer HRQoL in this group compared with adults without cancer. 21 …”

Section: Discussionmentioning

confidence: 74%

Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs

Singh

Granberg

Wolin

et al. 2017

JGO

123

146

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PurposeDespite the considerable impact of neuroendocrine tumors (NETs) on patients’ daily lives, the journey of the patient with a NET has rarely been documented, with published data to date being limited to small qualitative studies. NETs are heterogeneous malignancies with nonspecific symptomology, leading to extensive health care use and diagnostic delays that affect survival. A large, international patient survey was conducted to increase understanding of the experience of the patient with a NET and identify unmet needs, with the aim of improving disease awareness and care worldwide.MethodsAn anonymous, self-reported survey was conducted (online or on paper) from February to May 2014, recruiting patients with NETs from > 12 countries as a collaboration between the International Neuroendocrine Cancer Alliance and Novartis Pharmaceuticals. Survey questions captured information on sociodemographics, clinical characteristics, NET diagnostic experience, disease impact/management, interaction with medical teams, NET knowledge/awareness, and sources of information. This article reports the most relevant findings on patient experience with NETs and the impact of NETs on health care system resources.ResultsA total of 1,928 patients with NETs participated. A NET diagnosis had a substantially negative impact on patients’ personal and work lives. Patients reported delayed diagnosis and extensive NET-related health care resource use. Patients desired improvement in many aspects of NET care, including availability of a wider range of NET-specific treatment options, better access to NET experts or specialist centers, and a more knowledgeable, better-coordinated/-aligned NET medical team.ConclusionThis global patient-reported survey demonstrates the considerable burden of NETs with regard to symptoms, work and daily life, and health care resource use, and highlights considerable unmet needs. Further intervention is required to improve the patient experience among those with NETs.

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Section: Discussionmentioning

confidence: 74%

Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs

Singh

Granberg

Wolin

et al. 2017

JGO

123

146

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“…A Norwegian study included patients with NET tumors from any part of the gastrointestinal tract ( n = 196) [17], and a Swedish study defined the patients as having carcinoid tumor but only included 36 patients [16]. A large online anonymous survey performed in the USA reported reduced quality of life in a cohort of 663 subjects with self-reported diagnoses of carcinoid, islet cell, or unknown underlying tumor [18].…”

Section: Discussionmentioning

confidence: 99%

Health-Related Quality of Life in Patients with Small Intestine Neuroendocrine Tumors

et al. 2018

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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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“…Also, treating physicians may not be aware of niacin deficiency and accompanying pellagra since diagnosing, preventing or treating these conditions have received little attention in earlier literature and current available guidelines for treating NET patients. Given the impact of NET on the patient's quality of life [23,24] and the relatively long-term survival, a valuable additional goal in the care for NET patients should be preventing clinical niacin deficiency such as pellagra.…”

Section: Discussionmentioning

confidence: 99%

Niacin (Vitamin B<sub>3</sub>) Supplementation in Patients with Serotonin-Producing Neuroendocrine Tumor

Bouma¹,

Faassen²,

Kats-Ugurlu³

et al. 2015

Neuroendocrinology

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Background/Aims: Tryptophan is the precursor of serotonin and niacin (vitamin B₃). The latter is critical for normal cellular metabolism. Tryptophan and niacin can be deficient in patients with serotonin-producing neuroendocrine tumors (NETs). Niacin deficiency may lead to severe symptoms including pellagra. In patients with serotonin-producing NET, data on niacin status are scarce and niacin supplementation hardly receives attention. We aimed to assess the niacin status before and after supplementation in these patients. Methods: We identified serotonin-producing NET patients who had received oral niacin supplementation (mean dose 144 mg daily) for tryptophan deficiency and/or pellagra-associated symptoms. Presupplementation plasma tryptophan levels and niacin status based on the urinary niacin metabolite N¹-methylnicotinamide (N¹-MN) before (n = 42) and after the start of the supplementation (in 34 paired samples) were assessed. Reference values for urinary N¹-MN levels were established in 133 healthy individuals. Results: The mean presupplementation plasma tryptophan level was 31.8 ± 9.7 µmol/l (reference value 40.0-70.0). Presupplementation urinary N¹-MN levels were lower in patients (median 17.9 µmol/24 h, range 2.6-70.3) compared to healthy controls (median 43.7 µmol/24 h, range 9.5-169.3, p < 0.0001) and below normal in 45% of the patients. Niacin supplementation increased urinary N¹-MN levels to high normal levels (median 55.5 µmol/24 h, range 7.4-489.0) in 86% of the niacin-deficient patients. Conclusion: In serotonin-producing NET patients, niacin deficiency is prevalent. Therefore, urinary N¹-MN deserves to be included in their standard biochemical evaluation. Niacin supplementation normalizes the niacin status in most niacin-deficient serotonin-producing NET patients. A prospective study is warranted.

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Health related quality of life in patients with neuroendocrine tumors compared with the general Norwegian population

Abstract: 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.

Cited by 51 publications

References 27 publications

Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs

Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs

Health-Related Quality of Life in Patients with Small Intestine Neuroendocrine Tumors

Niacin (Vitamin B<sub>3</sub>) Supplementation in Patients with Serotonin-Producing Neuroendocrine Tumor

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