Cancer Beliefs Associated with Posttraumatic Stress Disorder in Neuroendocrine Tumor Survivors.

INTRODUCTION: Earlier detection and improved treatment of neuroendocrine tumors (NETs) have prolonged survivorship in NET patients. We undertook this study to understand the prevalence of NET-related posttraumatic stress disorder (PTSD) and the factors and cancer-related illness beliefs associated with PTSD. METHODS: We recruited patients with a diagnosis of NET from a large NET center in New York City. Cancer-related PTSD was assessed using the Revised Impact of Events scale (IES), with probable PTSD as ≥ 33. We used the Brief Illness Perception Questionnaire (BIPQ) to assess NET-related beliefs. Data on baseline patient characteristics were collected. Comparisons used chi-squares and Fisher exact tests, as appropriate. RESULTS: Of the 73 participants, 48 (66%) were female and the mean age was 60 years (standard deviation (SD) 11.7, see Table 1). Twelve patients (16%) met criteria for probable NET-related PTSD. Women were more likely to meet criteria for probable PTSD (15% vs. 1%, p = 0.04). Those who met criteria for probable PTSD were more likely to have higher overall scores on the BIPQ (64 vs. 57, p = 0.03), report constantly feeling unwell due to their cancer (4 vs. 1, p = 0.04), as well as report more physical and emotional symptoms from their cancer (5 vs. 1, p = 0.03, and 7 vs. 4, p = 0.02, respectively). CONCLUSION: NET patients with probable PTSD were more likely to be women with greater physical and emotional burden due to their cancer. Our findings suggest that specific threatening cancer-related beliefs, not disease characteristics, predict a higher risk of PTSD among NET survivors.

The patient-level effect of the cost of Cancer care - financial burden in German Cancer patients.

BACKGROUND: Financial toxicity of cancer has so far been discussed primarily in the US health care system and is associated with higher morbidity and mortality. In European health care systems, the socio-economic impact of cancer is poorly understood. This study investigates the financial burden and patient-reported outcomes of neuroendocrine (NET) or colorectal (CRC) cancer patients at a German Comprehensive Cancer Center. METHODS: This prospective cross-sectional study surveyed 247 advanced stage patients (n = 122 NET/n = 125 CRC) at the National Center for Tumor Diseases, in Germany about cancer-related out-of-pocket costs, income loss, distress, and quality of life. Multiple linear regression analysis was performed to demonstrate the effects of economic deterioration on patients' quality of life and distress. RESULTS: 81% (n = 199) of the patients reported out-of-pocket costs, and 37% (n = 92) income loss as a consequence of their disease. While monthly out-of-pocket costs did not exceed 200€ in 77% of affected patients, 24% of those with income losses reported losing more than 1.200€ per month. High financial loss relative to income was significantly associated with patients' reporting a worse quality of life (p < .05) and more distress (p < .05). CONCLUSIONS: Financial toxicity in third-party payer health care systems like Germany is caused rather by income loss than by co-payments. Distress and reduced quality of life due to financial problems seem to amplify the burden that already results from a cancer diagnosis and treatment. If confirmed at a broader scale, there is a need for targeted support measures at the individual and system level.

Health-related quality of life in neuroendocrine neoplasia: a critical review.

Incidence of neuroendocrine neoplasia (NEN) is increasing, as is use of health-related quality of life (HRQoL) measurement in clinical trials. Following development of validated questionnaires, HRQoL is widely used to assess outcomes. This review is intended for healthcare professionals and is based on a selection of data published in the last decade. HRQoL is on par with other clinical endpoints such as performance status. Assessments in clinical trials have been particularly useful for monitoring the symptom burden of NEN, for the effects of treatments on patients' lives, and have provided new data allied to the usual clinical endpoints. QoL expressed as quality-adjusted life years (QALYs) have become the most important primary outcome to establish cost-effectiveness in health economic evaluation. From looking at clinical trials over the last 10 years, we see that the quality of HRQoL evidence reported in published studies has improved and, in general, recent studies are likely to be more methodologically robust. Assessment of HRQoL in clinical trials is likely to become a standard part of clinical practice in NEN, as in other cancers. However, clear methods for calculating the clinical meaningfulness of changes in scores are needed. Other limitations of HRQoL measurement include lack of specificity to certain symptom sets and ease of completion and administration. An international group taking a lead on developing HRQoL research specifically in NEN patients is needed to address limitations of the evidence base. In order for greater weight to be placed on HRQoL data, agreement on optimal, validated scoring systems is needed.

Quality of life, resource utilisation and health economics assessment in advanced neuroendocrine tumours: a systematic review.

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.

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.

Measuring the relationship of quality of life and health status, including tumor burden, symptoms, and biochemical measures in patients with neuroendocrine tumors.

The measurement of health-related quality of life (HRQOL) has become essential for evaluating the impact of neuroendocrine tumors (NETs) on symptoms and social, emotional, psychological, and physical functioning of patients who harbor these tumors. This article describes instruments that have been developed to capture the spectrum of symptoms and the impact of the disease on their overall well-being. The authors discuss the importance of adequate sensitivity, specificity, and reproducibility and the value of psychometric factor analysis to explore the domains that embrace the manifestations of these tumors as well as aspects of the instruments that reflect tumor burden, biochemical, and hormonal status.

Familial neuroendocrine tumor syndromes: from genetics to clinical practice.

Thanks to recent developments in molecular biology and cancer genetics, genetic testing has become widely available and useful in several kinds of familial tumor syndrome. However, the impact of genetic testing on medical management is not always straightforward. Clinicians have to consider the psychological impact and ethical complexities of communicating hereditary cancer risk information to families. This review notes some points on genetic counseling before and after genetic testing for familial neuroendocrine tumor syndromes.