Assessment of change in quality of life, carcinoid syndrome symptoms and healthcare resource utilization in patients with carcinoid syndrome.

BACKGROUND: There is limited information on changes over time in carcinoid syndrome (CS) symptoms and quality of life (QoL). This study assessed change in CS symptoms and QoL in patients treated with somatostatin analogs (SSAs) using the Functional Assessment of Cancer Therapy-General (FACT-G) and Patient-Reported Outcomes Measurement Information System (PROMIS)-29 instruments. METHODS: Patients ≥18 years old with CS symptoms and treated with SSA or non-SSA agents in the United States were recruited through a patient advocacy group to complete a two-part, anonymous online survey. Time point (T) 1 survey was fielded from July-October 2016, and T2 survey followed 6 months later. Clinical characteristics and SSA treatment duration were assessed at T1. FACT-G and PROMIS-29 QoL surveys were administered and CS symptoms were assessed at T1 and T2; proportions of patients not experiencing symptoms were compared by McNemar's test. Healthcare resource utilization (HRU) was assessed for the T1-T2 interval, and mean difference in QoL score from T1 to T2 by SSA duration was calculated. RESULTS: Of 117 participants at T1, 89 (76%) completed the T2 survey and served as the study sample; 11 (13%) were treated with SSAs for > 0-2 years, 37 (42%) for > 2-5 years, and 39 (45%) for > 5 years. A higher proportion of patients at T2 vs. T1 reported the following symptoms as not applicable: diarrhea (16% vs. 7%, p < 0.05), flushing (28% vs. 18%, p < 0.05), wheezing (78% vs 66%, p = 0.008). Most patients (89%) had a physical exam and a mean of 7.2 healthcare provider visits between T1 and T2. Patients treated with SSAs for ≤2 years had a mean positive change of 3.7 in their FACT-G total score between surveys, and 6.0 in an additional set of CS-specific questions. Patients receiving SSAs for > 2 years did not appear to associate with a clinically meaningful improvement in QoL score as assessed by FACT-G between T1 and T2; patients also had no clinically meaningful improvement as assessed by PROMIS-29. CONCLUSIONS: There may be clinically important improvement in QoL as measured by FACT-G in patients in earlier years of receiving SSA, which may not appear in later years of SSA treatment.

Value of a patient-reported-outcome measure of carcinoid syndrome symptoms.

OBJECTIVE: Literature on patient-reported outcomes (PRO) of carcinoid syndrome symptoms (CSS) is scarce. We used a patient-reported outcome measure (PROM) to evaluate CSS, the domains of daily life impacted by CSS, the main symptoms that affect daily life, its change according to clinical, biological and morphological evolution, and the risk factors for a poor PRO-CSS score. METHODS: Patients completed the PRO-CSS, EORTC-QLQ30, and GI-NET21 questionnaires at the time of their clinical, laboratory, and morphological assessments in a multicentre French cohort study from February 2019 to May 2020. RESULTS: In total, 147 patients with metastatic ileal (n =126), lung (n =20), or unknown primitive neuroendocrine tumour but high 5-hydroxyindole-3-acetic acid level (n =1) were included; 42 (32%) received an above-label dose of somatostatin analogues. Fifty-one (35%) patients had a poor PRO-CSS score. Travelling and food restriction were the two main domains affected. Diarrhoea (mean: 2.3/5 on Likert scale), imperiousness (mean of 2.5/5), fatigue (2.2/5), abdominal pain (1.7/5), and flushing episodes (1.5/5) were the main symptoms affecting daily life. The PRO-CSS score was not correlated to the clinical assessment performed by physicians at the baseline and during the follow-up. Patients with a poor PRO-CSS score had a higher tumour burden. CONCLUSIONS: PROM-CSS may help physicians make an objective assessment of CSS and its impact in daily practice; this tool could become a key evaluation criterion in clinical trials focusing on CSS.

Impact of carcinoid syndrome symptoms and long-term use of somatostatin analogs on quality of life in patients with carcinoid syndrome: A survey study.

To evaluate association of carcinoid syndrome (CS) symptom burden and somatostatin analog (SSA) duration with quality of life (QoL) using Functional Assessment of Cancer Therapy-General (FACT-G) and Patient-Reported Outcomes Measurement Information System (PROMIS-29) instruments.Adults who received treatment for CS symptoms in the US were recruited to participate in a cross-sectional online survey (July-October, 2016). Demographic, clinical, and QoL questions (FACT-G, 29 CS-related supplemental questions, PROMIS-29) were included. Descriptive and multivariable regression analyses adjusting for demographic and clinical characteristics followed.Most (98%) of the 117 patients received SSAs in the prior month. Multivariable regression analysis showed ≥4 bowel movements/day (vs <4) and each additional CS symptom was associated with 7.1 (P = .043) and 3.4 (P = .034) point FACT-G total score decreases, respectively. Requiring bed rest (vs normal activity) was associated with significant decreases in FACT-G total score (P < .001). There were similar associations for FACT-G subscales, supplemental questions, and PROMIS-29. After adjustment, FACT-G total score was significantly higher (11.3 points; P = .033) for patients treated with SSA >8 years versus <2.7 years.CS symptom burden was observed to be associated with lower QoL scores, measured by FACT-G. Patients with >8 years SSA treatment duration versus <2.7 years had higher QoL.

Health-related quality of life, anxiety, depression and impulsivity in patients with advanced gastroenteropancreatic neuroendocrine tumours.

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.

Comparison of health-related quality of life in patients with neuroendocrine tumors with quality of life in the general US population.

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.

Masturbation in prepubescent children: a case report and review of the literature.

A 10-year-old girl observed to have episodes of flushing, pallor and weakness, was referred for investigation of possible carcinoid syndrome. The cause of these episodes was masturbation. Masturbation occurs at all ages and in most cases is considered normal behaviour. Lack of recognition of this phenomenon in children may lead to unnecessary investigations and treatment.

The practical use of carbon dioxide-induced anxiety in the diagnosis and care of patients with panic disorder.

The authors utilized inhalation of 35% carbon dioxide and 65% oxygen as a diagnostic tool in the evaluation of suspected panic disorder. In two inpatients admitted for a medical evaluation for pheochromocytoma and carcinoid syndrome, respectively, a positive response to the double-blind administration of CO2/O2 or room air was consistent with a diagnosis of panic disorder by psychiatric history. In two additional patients in whom denial of mental illness was a psychological impediment to proper treatment, a positive CO2/O2 challenge resulted in therapeutic benefit.