Abstract
Introduction
Neuroendocrine Neoplasms (NEN) are rare tumours arising in the gastro-intestinal tract or lungs. Poor health related quality of life (HRQoL) is associated with the carcinoid syndrome (CS), but fatigue is also important. We aimed to quantify HRQoL and fatigue in out-patients with NEN.
Methods
In a cross-sectional study, we included 231 patients with NEN (G1-G3). We used pre-validated questionnaires MFI-20, EQ-5D-5L and 85% responded. We collected clinical, biochemical, imaging, and pathology data from Electronic Patient files. Normative values for fatigue and HRQoL were derived from background populations.
Results
Median age was 68 years (range 21–91) and 52% were male. Patients with NEN reported more fatigue and worse HRQoL compared to the background population (p < .05). Cured patients reported higher HRQoL than patients with current disease, and patients with high grade neoplasms (G2–G3) reported more anxiety and depression compared to patients with low grade G1 disease (p < .05). The CS resulted in a 9% relative loss in Quality Adjusted Life Years compared to patients without CS. (p < .05). More than 50% of patients with CS reported problems with usual activities, pain/discomfort, and anxiety/depression. Overall, 36% of patients with NEN were fatigued and 92% of these had psychological fatigue. Younger patients (<65 years) experienced more fatigue than older patients (p < .05).
Conclusion
Patients with NEN report significantly lower HRQoL and more fatigue compared to the background population. Especially, patients with CS had pain, discomfort, anxiety, and depression and a relative reduction in HRQoL. However, compared to other cancer types, patients with NEN experience less fatigue.
Author contributions
Nynne Emilie Hummelshøj: conceptualization, methodology, data collection, formal analysis, writing - original draft. Gitte Dam: conceptualization, methodology, writing – review and editing, supervision. Henning Grønbaek: conceptualization, methodology, writing – review and editing, supervision. Elizaveta Tabaksblat: data collection, writing - review and editing. Palle Bager: conceptualization, methodology, writing - review and editing.
Disclosure statement
Gitte Dam: Advisory Board and teaching activities for Ipsen and Sam Nordic. No potential conflict of interest was reported by the author(s).