Aim
To assess the psychological well‐being and social integration of adults with craniopharyngioma diagnosed in childhood.
Method
A cross‐sectional study of a nationwide cohort of young adults with craniopharyngioma in Germany was performed. A structured questionnaire covered the sociodemographic, clinical data, and subjective effects of the condition on social integration. Psychological well‐being was assessed using the Hospital Anxiety and Depression Scale (HADS). Results were compared to young adults with type 1 diabetes mellitus (T1DM).
Results
The study included 59 participants (29 females, 30 males; mean age 25y 2mo [SD 5y 10mo]), mean age at first surgery 10y 2mo [SD 3y 7mo]. Compared to the T1DM group, significantly more young people with craniopharyngioma aged 25 to 35 years lived at their parents’ homes (craniopharyngioma 43.34%; T1DM 13.7%; χ2=4.14, p=0.049), and fewer lived in a relationship (craniopharyngioma 8.69%; T1DM 54.7%; χ2=15.74, p<0.001). The HADS revealed a score for depression above the cut‐off in 20.69 per cent of young adults with craniopharyngioma and in 6 per cent of young adults with T1DM (χ2=13.42, p<0.001).
Interpretation
Young adults with craniopharyngioma reported subjective disadvantages in professional and social integration. Further, they presented with reduced well‐being and increased depression rates. Better psychosocial support and self‐management education might reduce the long‐term burden of the disease.