ESPE Abstracts (2022) 95 P1-548

ESPE2022 Poster Category 1 Pituitary, Neuroendocrinology and Puberty (77 abstracts)

Legal degree of disability in childhood-craniopharyngioma survivors during long-term follow-up: Results of the HIT-ENDO study

Svenja Boekhoff 1 , Maria Eveslage 2 , Julia Beckhaus 1 , Carsten Friedrich 1 & Hermann L. Müller 1

1Department of Pediatrics and Pediatric Hematology / Oncology, University Children's Hospital, Klinikum Oldenburg AöR, Carl von Ossietzky University, Oldenburg, Germany; 2Institute of Biostatistics and Clinical Research, University of Münster, Münster, Germany

Background: Cranioparyngiomas are rare low-grade embryonic malformational tumors of the sellar/parasellar region. The prognosis after diagnosis during childood and adolescence is influenced by endocrine and hypothalamic long-term sequelae. A legal status of the degree of disability (GdB), according to the German Social Code Book V that is worthy of support provides financial means for psychosocial rehabilitation and participation of craniopharyngioma survivors. The aim of this study was to determine the association of clinical/psychosocial characteristics and quality of life (QoL) indicators with the resulting GdB.

Patients and methods: HIT-Endo is a German registry study on craniopharyngioma patients aged ≤ 18 years at diagnosis and included before the year 2000. In a sample of 108 patients, the degree of disability and the association with endocrine, ophthalmological, neuropsychological and psychosocial parameters was analyzed after a mean follow-up period of 16 years (95% CI: 9.8-36.4). The Pediatric Quality of Life (PEDQOL) and the German daily life ability scale Fertigkeitenskala Münster-Heidelberg (FMH) questionnaires were used to assess health-related QoL and functional capacity, respectively.

Results: 44 patients (41%) did not receive a GdB, three patients (3%) received a GdB of 30-40, 43 patients (40%) a GdB of 50-90 and 18 patients (17%) the maximal GdB of 100. Higher GdB were associated with lower education, higher body mass index standard deviation and a higher degree of visual impairment and hypothalamic involvement of the craniopharyngioma. Patients with a GdB of 100 reported loss in physical and cognitive function, as well as fatigue, dyspnea, and pain conditions, and limitations in social and occupational contexts. They further had a lower functional capacity (FMH) when compared to those with a smaller GdB.

Conclusion: The GdB is associated with psychosocial and physical impairments and reflects the long-term consequences of craniopharyngioma during childhood and adolescence. A low functional capacity score as assessed by FMH may indicate a high GdB in later life of craniopharyngioma survivors.

Volume 95

60th Annual ESPE (ESPE 2022)

Rome, Italy
15 Sep 2022 - 17 Sep 2022

European Society for Paediatric Endocrinology 

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