Daytime sleepiness and health-related quality of life in patients with childhood-onset craniopharyngioma

Overall survival rates after craniopharyngioma (CP) are high (92%), but frequently quality of life (QoL) is impaired in patients with CP involving hypothalamic structures. Tumour- and/or treatment-related hypothalamic lesions may result in disturbances of circadian rhythms including increased daytime sleepiness. We investigated the relationship between health-related QoL and daytime sleepiness in patients with childhood-onset CP. After a median follow-up of 10 years (range: 1-39), 119 CP patients (63 female), who were recruited 2000-2022 in the KRANIOPHARYNGEOM 2000/2007 and KRANIOPHARYNGEOM Registry 2019 trials, were assessed for daytime sleepiness using the Epworth Sleepiness Scale (ESS) and for QoL by EORTC QLQ-C30 questionnaire. CP patients with increased daytime sleepiness (ESS score > 10, n = 34) had worse self-assessment of QoL (p = 0.003), when compared to CP patients with normal ESS scores (n = 85). Increased daytime sleepiness was negatively correlated with QoL (r=-0.395; p < 0.001). Surgical hypothalamic lesions, detectable after surgical intervention in 92.9% of the reference-assessed patients, were associated with significantly higher ESS scores, whereas such impact could not be observed for presurgical hypothalamic involvement of the CP (72.4% of the reference-assessed patients). Compared to patients with an ESS score in the normal range, patients with increased daytime sleepiness suffered from impaired QoL in all functional scales and the global QoL scale of the EORTC QLQ-C30. As increased daytime sleepiness plays an important role for QoL in survivors of CP, hypothalamus-sparing surgical treatment strategies should be considered as state of the art in patients with CP for prevention of increased daytime sleepiness.Clinical trial registration NCT01272622; NCT04158284, NCT00258453.