title: [Social participation after childhood craniopharyngioma].
abstract: Craniopharyngioma is a rare, benign central nervous system tumor, which may be a source of multiple complications, from endocrinology to vision, neurology and neurocognitive functions. This morbidity can lead to reduced participation in life activities, as described in the International Classification of Functioning, Disability, and Health. The primary objective of this study was to measure participation in life activities in a population of children and young adults affected by childhood craniopharyngioma, using the LIFE-H questionnaire (Assessment of Life Habits), validated as a social participation measurement tool in various pediatric disabilities. We also describe complications in our population and examined the potential links between tumor characteristics, complications, and participation in life activities.
  
  
  METHODS
  This was a descriptive study, including all patients having presented childhood craniopharyngioma (before 18 years of age), followed in the Lyon region between 2007 and 2013. The main criterion was the LIFE-H results, completed by the patient or the carer.
  
  
  RESULTS
  Of 21 patients included in the study, 14 completed the questionnaire, a mean 6.7 years after the diagnosis (SD: 3.9 years). The mean total LIFE-H score was 8.4 (SD: 1.03) for a normal score estimated at 10 in the general population. The lowest scores affected the nutrition, community life, and recreation dimensions. No patient had a normal score on all dimensions; 57% of the patients had more than three dimensions affected. The variability of the results between patients was lower for some dimensions with high means (fitness, personal care, communication, housing, mobility, responsibilities, and education) than in others (nutrition, interpersonal relationships, community life, employment, and recreation) with rather low means. All patients had an endocrinological deficit, 19% hypothalamic syndrome, 52% an impaired fulfillment feeling, 76% visual impairment, 14% neurologic impairment, and 91% neurocognitive impairment. In the entire group of patients, 57% were able to attend a normal school (of which 38% needed a personal helper), 43% had to enter a specialized school. In patients in a specialized school, the LIFE-H results were significantly lower in the nutrition, communication, housing, and recreation dimensions. Girls also had significantly better results in many dimensions than boys.
  
  
  CONCLUSIONS
  Heavy comorbidity goes with childhood craniopharyngioma and affects patients' participation in life activities, which is not very low but multidimensional (more than three affected dimensions). This participation is mainly affected in social dimensions, whereas in cerebral palsy, where the LIFE-H has been tested several times, the daily activities dimensions are more affected.
  
  
  CONCLUSIONS
  Patients with childhood craniopharyngioma are affected in their participation in daily activities, mainly in the social dimensions. This could be improved with systematic diagnosis of these participation impairments, with the goal of adapted multidisciplinary management.
authors.affiliation: Centre médico-chirurgical de réadaptation des Massues, Croix-Rouge française, 92, rue Edmond-Locard, 69322 Lyon cedex 05, France; Service de médecine physique et réadaptation pédiatrique, l'Escale, hôpital Femme-Mère-Enfant, 59, boulevard Pinel, 69500 Bron, France. Electronic address: dr_olivari_camille@outlook.fr.
authors.forename: C
authors.initials: C
authors.lastname: Olivari-Philiponnet
authors.affiliation: Centre médico-chirurgical de réadaptation des Massues, Croix-Rouge française, 92, rue Edmond-Locard, 69322 Lyon cedex 05, France.
authors.forename: F
authors.initials: F
authors.lastname: Roumenoff
authors.affiliation: Centre médico-chirurgical de réadaptation des Massues, Croix-Rouge française, 92, rue Edmond-Locard, 69322 Lyon cedex 05, France.
authors.forename: M
authors.initials: M
authors.lastname: Schneider
authors.affiliation: Centre Romans-Ferrari, rue de la Chanal, BP 10118, 01700 Miribel, France.
authors.forename: C
authors.initials: C
authors.lastname: Chantran
authors.affiliation: Service mobile d'accompagnement, d'évaluation et de coordination, 1, ancienne montée, 01700 Miribel, France.
authors.forename: M
authors.initials: M
authors.lastname: Picot
authors.affiliation: Service d'endocrinologie pédiatrique, hôpital Femme-Mère-Enfant, 59, boulevard Pinel, 69500 Bron, France.
authors.forename: P
authors.initials: P
authors.lastname: Berlier
authors.affiliation: Service de neurochirurgie pédiatrique, hôpital neurologie Pierre-Wertheimer, 59, boulevard Pinel, 69500 Bron, France.
authors.forename: C
authors.initials: C
authors.lastname: Mottolese
authors.affiliation: Centre médico-chirurgical de réadaptation des Massues, Croix-Rouge française, 92, rue Edmond-Locard, 69322 Lyon cedex 05, France.
authors.forename: J-C
authors.initials: JC
authors.lastname: Bernard
authors.affiliation: Service de médecine physique et réadaptation pédiatrique, l'Escale, hôpital Femme-Mère-Enfant, 59, boulevard Pinel, 69500 Bron, France; Université de Lyon, 69000 Lyon, France; Université Lyon I, 69100 Villeurbanne, France; CNRS UMR 5558, équipe biostatistique santé, laboratoire de biométrie et biologie évolutive, 69310 Pierre-Bénite, France.
authors.forename: C
authors.initials: C
authors.lastname: Vuillerot
mesh_terms: D000293:Adolescent; D002648:Child; D003397:Craniopharyngioma / Q000150:complications* / Q000523:psychology; D019988:Children with Disabilities; D005260:Female; D006801:Humans; D008297:Male; D010911:Pituitary Neoplasms / Q000150:complications* / Q000523:psychology; D012189:Retrospective Studies; D058992:Social Participation; D011795:Surveys and Questionnaires