Prospective and longitudinal study on quality of life in 50 survivors of childhood craniopharyngioma

Late effects such as obesity have major impact on quality of life (QoL) in survivors of childhood craniopharyngioma. We prospectively and longitudinally analyzed QoL by Fertikeitenskala Münster-Heidelberg (FMH) ability scale in 50 patients. Craniopharyngioma was diagnosed in patients at a median age of 8.2 years, ranging from 0.05 to 18 years. The median follow-up interval between diagnosis and first QoL evaluation was 4.6 years, ranging from 1.5 to 16 years. The first QoL evaluation was performed at a meadian age of 13.7 years, ranging from 2.3 to 30.7 years. A second follow-up was performed after first evaluation of QoL at a median further follow-up interval of 3.3 years (range: 1.7 to 4.3 years). The longitudinal evaluation was prospectively performed at a median age of 17.3 years (range: 4.0 to 34.2 years). Body mass index (BMI), hypothalamic involvement (HI), the degree of surgical resection, and irradiation were also evaluated.

QoL did not improve in obese patients (BMI ≥2SD) (n=32) and patients with HI (n=30). QoL in normal weight patients (n=18) and patients without HI (n=20) significantly (p<0.05; p<0.05) improved during follow-up and when compared with QoL in obese patients (p<0.001) and in patients with HI (p<0.01). No differences in QoL were detectable with regard to irradiation, gender, or the degree of surgical resection.

We conclude that obesity and HI in patients with childhood craniopharyngioma have significant impact on self-perceived QoL. Therapeutic and rehabilitative efforts should be intensified, especially in these patients at risk for QoL deterioration. In normal weight patients and patients without HI, relevant QoL improvement was observed during follow-up.