Patterns of Symptoms Burden in Neuroendocrine Tumors: A Population-Based Analysis of Prospective Patient-Reported Outcomes

Abstract

Background How to best support patients with neuroendocrine tumors (NETs) remains unclear. Improving quality of care requires an understanding of symptom trajectories. Objective validated assessments of symptoms burden over the course of disease are lacking. This study examined patterns and risk factors of symptom burden in NETs, using patient‐reported outcomes. Subjects, Materials, and Methods A retrospective, population‐based, observational cohort study of patients with NETs diagnosed from 2004 to 2015, who survived at least 1 year, was conducted. Prospectively collected patient‐reported Edmonton Symptom Assessment System scores were linked to provincial administrative health data sets. Moderate‐to‐severe symptom scores were presented graphically for both the 1st year and 5 years following diagnosis. Multivariable Poisson regression identified factors associated with record of moderate‐to‐severe symptom scores during the 1st year after diagnosis. Results Among 2,721 included patients, 7,719 symptom assessments were recorded over 5 years following diagnosis. Moderate‐to‐severe scores were most frequent for tiredness (40%–51%), well‐being (37%–49%), and anxiety (30%–40%). The proportion of moderate‐to‐severe symptoms was stable over time. Proportion of moderate‐to‐severe anxiety decreased by 10% within 6 months of diagnosis, followed by stability thereafter. Changes were below 5% for other symptoms. Similar patterns were observed for the 1st year after diagnosis. Primary tumor site, metastatic disease, younger age, higher comorbidity burden, lower socioeconomic status, and receipt of therapy within 30 days of assessment were independently associated with higher risk of elevated symptom burden. Conclusion Patients with NETs have a high prevalence of moderate‐to‐severe patient‐reported symptoms, with little change over time. Patients remain at risk of prolonged symptom burden following diagnosis, highlighting potential unmet needs. Combined with identified patient and disease factors associated with moderate‐to‐severe symptom scores, this information is important to support symptom management strategies to improve patient‐centered care. Implications for Practice This study used population‐level, prospectively collected, validated, patient‐reported outcome measures to appraise the symptoms burden and trajectory of patients with neuroendocrine tumors (NETs) after diagnosis. It is the largest and most detailed analysis of patient‐reported symptoms for NETs. Patients with NETs present a high burden of symptoms at diagnosis that persists up to 5 years later, highlighting unmet needs. Early and comprehensive symptom screening and management programs are needed. This information should serve to devise pathways and policies to better support patients, evaluate supportive interventions, and assess the effectiveness of symptom management at the provider, institutional, and system levels.

Patient reported symptoms, coping and quality of life during somatostatin analogue treatment for metastatic small- intestinal neuroendocrine tumours

“…We found in our study no change in symptom severity over the study period of 1 year. This reproduce the findings in a recently published study were 2.271 NET-patients were followed for 5 years and the symptom load remained almost unchanged over the study period [31].…”

Prevalence of depression in a cohort of 400 patients with pancreatic neoplasm attending day hospital for major surgery: Role on depression of psychosocial functioning and clinical factors

“…With regard to the association between depression and sociodemographic, clinical, and psychosocial variables, our findings showed that being female and younger than 50 years were almost significantly related to depression. Indeed, age has already shown discordant associations with depression, 8 while in most studies, female patients tend to have higher levels of anxiety and depression, compared to males 6,8 . In our sample, also being engaged in a stable relationship and being employed constituted risk factors with respect to depression, which is not surprising, if we consider that facing a severe diagnosis in a stage of life in which people is still highly engaged in work and family duties might be particularly stressful.…”

“…Feeling down was frequent among patients with subthreshold depression too, as well as tiredness and lack of energy, which are correlated to early‐stage physical symptoms of pancreatic malignancies and to the general low physical condition of these patients. Also, Hallet et al 6 . reported high frequencies of moderate‐to‐severe scores for tiredness (40%–51%) in patient with neuroendocrine tumors.…”

“…Moreover, since conservative oncological therapies have failed to show any benefit in long‐term survival, resection remains the only modality of treatment offering any possibility of cure. 3 Research has shown that perceived pain, anxiety, and depression are particularly high in pancreatic patients when compared with other malignancies, 4,5 and the risk of prolonged symptom burden following diagnosis tends to show little change over time 6 . The degree of information provided, the organization of hospitalization, the surgical intervention, as well as long‐term postoperative morbidity and long‐term radiotherapy or chemotherapy can all have a major impact on overall quality of life (QoL) and perceived distress 5,7–9 .…”

PREPARE: PreoPerative Anxiety REduction. One-Year Feasibility RCT on a Brief Psychological Intervention for Pancreatic Cancer Patients Prior to Major Surgery

“…Pancreatic patients show a significant psychological burden related to their condition and to preoperative anxiety, which tend to remain over all symptom trajectory (Hallet et al, 2019). Our study investigated the feasibility of a one-session psychological intervention devoted to increase patient's selfefficacy and awareness in dealing with anxiety symptoms, by using emotional support and mindfulness techniques.…”