Craniopharyngioma is a rare, benign central nervous system tumor, which may be source of multiple complications, from endocrinology to vision, neurology and neurocognitive fonctions. This morbidity can lead to participation restrictions, as described in the International Clasification of Functioning. Primary objective of this study was to measure participation in a population of children and young adults having been affected by a childhood carniopharyngioma, using the LIFE-H questionnaire (Assessment of Life Habits), valid as a participation measure in various pediatric disabilities. We also examined potential links between the tumor characteristics, the complications and the participation.

Descriptive, multicenter study, including all patients having presented a childhood craniopharyngioma (before 18), followed in Lyon region between 2007 and 2013. Main criteria was the LIFE-H results, completed by the patient or the carer.

On 21 patients included in the study, 14 have completed the questionnaire, with a mean answer delay of 6.7 years after the diagnosis (SD: 3.9 years). Mean total LIFE-H score was 8.4 (SD: 1.03) for a normal score estimated at 10 in general population. The lowest scores affected nutrition, community life and recreation dimensions. All patients had a endocrinological deficit, 19% an hypothalamic syndrome, 52% an impaired fullfilness feeling, 76% visual impairment, 14% a neurologic impairment, 91% a neurocognitive impairment. 57% of all patients could keep on attending a normal school, 43% had to enter a specific school. In patients in specific school, LIFE-H results were significantly lower in nutrition, communication, housing and recreation dimensions.

Patients with childhood craniopharyngioma have their participation affected, mainly in the social dimensions. We could enhance it with systematic diagnosis of those participation impairements, with the goal of a suitable multidisciplinary management.