Outcome of craniopharyngioma in children: long-term complications and quality of life

Craniopharyngiomas are tumorous embryogenic malformations. As the survival rate after craniopharyngioma is high (92 %), prognosis and quality of life (QoL) in survivors mainly depend on adverse late effects such as obesity.

Quality of life (QoL) is central to pediatric practice. Where it is possible to manage but not cure a disease, it is important to determine how far treatment and disease compromise the child's QoL. In this way, informed judgments can be made about whether or not treatment is appropriate, and, where there is a choice, which choice might be the best option for the child. In this review, we consider different approaches to measuring child QoL, report a methodological review of measures currently available, evaluate the quality of these measures, and finally consider the implications for the future development and use of QoL measures. Computer searches identified 269 potentially relevant articles, of which 137 were included in the review. Of these, 43 were primarily concerned with the development of a new measure of QoL, 79 reported subsequent development of these same measures, and 15 used a battery approach to measure QoL. All currently available measures have limitations (e.g., limited psychometric data, lack of parallel forms for children and proxy raters, and insufficient attention to children's ability to complete paper-and-pencil measures). However, recommendations are made on the basis of those considered to be most satisfactory. It is essential that attempts be made to use QoL measures in research (e.g., evaluation of clinical trials and alternative treatments) to gain experience that will guide development of a second generation of more sophisticated measures. Despite the practical difficulties identified, measurement of QoL remains of central interest to all those concerned with the well-being of children.

The Epworth Sleepiness Scale (ESS) is a questionnaire widely used in English speaking countries for assessment of subjective daytime sleepiness.