Background: Current surveillance guidelines for succinate dehydrogenase type B (SDHB) pathogenic variant (PV) carriers reduce mortality and metastatic disease risk through early detection of phaeochromocytoma and paraganglioma (PPGL), but the burden associated with lifelong surveillance remains poorly quantified.
Aims: We aimed to evaluate the psychological and financial burden of surveillance in SDHB PV carriers by integrating health-related quality of life (HRQoL) and health economic outcomes, and to identify opportunities to minimise low-value care through more sustainable surveillance strategies.
Methods: HRQoL was assessed in a multicentre cross-sectional study of 47 Australian SDHB PV carriers using the EQ5D5L, EQ-VAS and EORTC QLQ-C30 questionnaires. Utility values derived from this study were incorporated into a Markov model comparing current guideline-based surveillance (annual clinical review and plasma metanephrines with biennial MRI and periodic PET imaging) with 3-yearly and 5-yearly surveillance strategies.
Results: SDHB PV carriers had lower quality of life than Australian population norms, with a mean EQ5D5L utility score of 0.776 and significantly increased anxiety/depression (OR 3.78, 95% CI 2.13-6.60, p<0.001). Reduced quality of life was observed even among carriers without SDHB-related tumours. In the health economic model, current guideline-based surveillance generated the highest quality adjusted light years (14.41 QALYs) but also the highest lifetime cost ($69,595 per carrier), compared with 3-yearly surveillance (14.35 QALYs, $56,538) and 5-yearly surveillance (14.29 QALYs, $49,458). Sensitivity analyses demonstrated that when surveillance-associated anxiety ("scanxiety") generated an annual disutility of 0.038, less frequent surveillance became the preferred strategy, suggesting intensive surveillance may represent low-value care for some individuals.
Conclusion: Lifelong surveillance for SDHB PV carriers is associated with measurable psychological and financial burden despite its clinical benefits. These findings highlight the importance of incorporating patient-reported outcomes into surveillance policy and support further research into personalised surveillance that balance clinical effectiveness with quality of life and maximise healthcare value.