Quality of life, hypothalamic obesity, and sexual function in adulthood two decades after primary gross-total resection for childhood craniopharyngioma

Purpose All treatments for childhood craniopharyngioma are associated with complications that potentially affect quality of life. This study was designed to investigate the impact of gross total resection on long-term quality of life and sexual functioning in adulthood. Methods Adults treated with primary gross total resection for childhood craniopharyngioma and >= 10 years of follow-up were included in this retrospective cohort study. The Short Form 36 Health Survey Questionnaire Version 2 (SF-36v2), Medical Outcomes Study (MOS) sexual functioning survey, and a sociodemographic/health questionnaire were administered. Results Twenty-two subjects with a median length of follow-up of 19 years (range 12-30) completed the questionnaires. Fifty-five percent reported excellent or very good general health. There was no significant difference of the mean SF-36v2 score between the patient cohort and the normal population. Twenty-two percent of females and 54% of males reported at least a little of a problem in one or more areas of sexual functioning, similar to the normal population. The proportion of sexually active individuals was decreased in this cohort. The median BMI of the participants was 29.5 (range 22.1-50.0 kg/m(2)). Preoperative hypothalamic involvement correlated with a significantly higher BMI, although the proportion of participants with class 3 obesity (BMI >= 40) did not differ significantly from that of the general population (9% and 7%, respectively). Conclusions Young adults with gross total resection of childhood craniopharyngioma report similar quality of life and sexual functioning compared to the general population, but appear to be less sexually active. Hypothalamic involvement on preoperative imaging was associated with a higher BMI in long-term follow-up.