Current directions in child and adolescent psychotherapy: Overview and introduction to the Special Issue.

Neuroendocrine tumors (NETs) are rare, heterogeneous neoplasms arising from neuroendocrine cells, predominantly in the small bowel, pancreas, and lung. Their incidence has increased globally, with US Surveillance, Epidemiology, and End Results data showing a rise from 1.5 to 6.8 per 100 000 from 1970 to 2019. Similar trends are observed in European health-care systems, attributed in part to improved diagnostics, imaging, and clinical awareness. Although most NETs follow an indolent course with prolonged survival, symptom burden can be substantial. Diagnosis is frequently delayed because of nonspecific symptoms, and metastatic disease is common at or after presentation. Approximately 20% of patients, especially those with metastatic small intestinal NETs, experience carcinoid syndrome, marked by diarrhea, flushing, and sometimes carcinoid heart disease. For many patients with advanced NETs, symptom control and health-related quality of life (HRQoL) are higher priorities than extended survival. Although HRQoL and other patient-reported outcomes are increasingly recognized as important for assessing treatment benefit and guiding care in rare cancers, the existing literature is limited by small sample sizes, heterogeneous measurement approaches, and insufficient disease-specific data, particularly for neuroendocrine tumors. Available studies suggest NET patients often report worse HRQoL than the general population, with symptoms such as tiredness (44%-50%), lack of well-being (37%-49%), and anxiety (30%-40%) persisting up to 5 years postdiagnosis. Symptom burden is highest in patients with lung and gastroenteropancreatic NETs. Given the distinct biology and treatment patterns of small intestinal, pancreatic, and lung NETs, site-specific comparisons of patient-reported outcomes would provide important context for tailoring supportive care and future trial design. Data on care experiences in NET populations are also sparse, yet crucial for identifying unmet needs and improving patient-centered care. Most prior research has been cross-sectional, short-term, focused on advanced disease, or limited in its consideration of NET subtype heterogeneity. Common patient concerns include difficulty accessing NET specialists, limited involvement in decision making, and unmet informational needs.