Mapping the neglected topic in head and neck paraganglioma research: a PRISMA scoping review on quality of life

Paragangliomas in the head and neck (HNPGL) are rare slow growing neuro-endocrine tumors. The impact of various treatment strategies and tumor characteristics on health-related quality of life (HRQoL) remains unclear. This scoping review aims to map the available evidence and summarize the findings on how HNPGL affects patients’ HRQoL. A comprehensive literature search was conducted in PubMed, Embase, and Cochrane. Articles were included when presenting a quantification of HRQoL or Patient Reported Outcome Measures in patients with HNPGL (n ≥ 5). Studies focusing exclusively on paragangliomas outside the head and neck region were excluded. A scoping review using descriptive and inductive thematic analysis was performed and presented using the Prisma-ScR guidelines. Fourteen studies were included presenting quantifiable HRQoL data in patients with HNPGL. The most used HRQoL measure were the Short Form-36 (n = 4, 29%) and EORTC Core Quality of Life questionnaire (QLQ-C30) (n = 3, 21%), followed by Short Form-12 (n = 2, 14%). HNPGL negatively affects HRQoL across several domains, even in patients not requiring an intervention. Specific subgroups, including those with carotid body tumors, multiple tumors, or dysphonia, reported disproportionately lower HRQoL. Current sparse evidence on HRQoL in patients with HNPGL demonstrates significant impairment and identified various factors influencing this outcome. However, further research is necessary to specifically assess the effect of different therapeutic managements on HRQoL.