Low psychosocial burden in patients with paraganglioma syndrome: results from the Head and Neck Paraganglioma Registry in a single center
Authors' conclusion
The psychosocial impact of harboring a PPGL seems to align with the general healthy Dutch population. Clinical care management involving a multidisciplinary approach and comprehensive counseling on PPGLs and their genetic origins, effectively supports patients. Routine psychological support in the care for these patients does not seem imperative and should be offered indicated on a case-by-case basis.
Study context
- Population
- First 100 patients from the Head and Neck PGL Registry, University Medical Center Utrecht
- Participants
- 100 participants
- Exposure
- (Pre)symptomatic status and genetic variant status; comparison with general Dutch population and other hereditary tumor syndromes
- Outcome
- Psychological impact of harboring a genetic variant associated with familial paraganglioma syndrome (EuroQol 5D-5L, Cancer Worry Scale, HADS, Modified Fatigue Impact Scale, EORTC QLQ-C30)
Methodological detailssingle-centre, registry-based
- Single-centre
- Registry-based
Main finding
As reported in the abstract
Psychosocial outcomes
- No significant differences when stratified for (pre)symptomatic status or genetic variant status
- Hereditary PPGLs tended to express greater concern about PPGL development in family members
- Complaints in physical domains more frequent in the sporadic group
Observational data: associations, not effects.
Secondary outcomes
Comparison with other hereditary tumor syndromes and Dutch population
- PPGL cohort had better outcomes than other hereditary tumor syndromes and aligned with the Dutch tariff
Original publication
Low psychosocial burden in patients with paraganglioma syndrome: results from the Head and Neck Paraganglioma Registry in a single center. Eur J Endocrinol. Published 24 February 2025. doi:10.
Composed by AI from the published abstract and checked against it. How Briefs are made →