THU220 Legal Degree Of Disability In Childhood-Craniopharyngioma Survivors After Follow-up - Results Of The Hit-Endo Study

THU220 Legal Degree Of Disability In Childhood-Craniopharyngioma Survivors After Follow-up - Results Of The Hit-Endo Study

Disclosure: S. Boekhoff: None. M. Eveslage: None. J. Beckhaus: None. C. Friedrich: None. H.L. Muller: None. Craniopharyngiomas are rare low-grade embryonic malformational tumors of the sellar/parasellar area. After a diagnosis during childhood and adolescence, endocrine and hypothalamic long-term se...

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Veröffentlicht in:Journal of the Endocrine Society 2023-10, Vol.7 (Supplement_1)
Hauptverfasser: Boekhoff, Svenja, Eveslage, Maria, Beckhaus, Julia, Friedrich, Carsten, Muller, Hermann Lothar
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Pediatric Endocrinology
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container_issue Supplement_1
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creator Boekhoff, Svenja
Eveslage, Maria
Beckhaus, Julia
Friedrich, Carsten
Muller, Hermann Lothar
description Disclosure: S. Boekhoff: None. M. Eveslage: None. J. Beckhaus: None. C. Friedrich: None. H.L. Muller: None. Craniopharyngiomas are rare low-grade embryonic malformational tumors of the sellar/parasellar area. After a diagnosis during childhood and adolescence, endocrine and hypothalamic long-term sequalae affect the prognosis. Financial resources for psychological rehabilitation and involvement of craniopharyngioma survivors are made available by a legal status of the degree of disability (GdB), according to the German Social Code Book V. This study analyzed the relationship between clinical/psychosocial traits and quality of life (QoL) measures and the resulting GdB. The HIT-Endo study included pediatric craniopharyngioma patients (%lt;18 years of age at the time of diagnosis) and diagnosed before the year 2000. The GdB was evaluated in a cohort of 108 patients following a median follow-up time of 16 years. The GdB at follow-up was evaluated in relation to endocrine, ophthalmological, neuropsychological, and psychosocial factors. 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 was associated with lower levels education, higher body mass index (BMI SDS), more severe visual impairment, and hypothalamic involvement of the tumor. Patients with a GdB of 100 reported impairments in social and occupational settings, as well as loss of physical and cognitive function, fatigue, dyspnea, and pain problems. In addition, they performed worse on the German Daily Life Ability Scale (FMH) than individuals with lower GdBs. The GdB reflects the long-term effects of craniopharyngioma during childhood and adolescence and is linked to physical and psychosocial problems. A low functional capacity, as measured by FMH scale, may indicate the eligibility for a higher GdB of craniopharyngioma survivors. Presentation: Thursday, June 15, 2023
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Boekhoff: None. M. Eveslage: None. J. Beckhaus: None. C. Friedrich: None. H.L. Muller: None. Craniopharyngiomas are rare low-grade embryonic malformational tumors of the sellar/parasellar area. After a diagnosis during childhood and adolescence, endocrine and hypothalamic long-term sequalae affect the prognosis. Financial resources for psychological rehabilitation and involvement of craniopharyngioma survivors are made available by a legal status of the degree of disability (GdB), according to the German Social Code Book V. This study analyzed the relationship between clinical/psychosocial traits and quality of life (QoL) measures and the resulting GdB. The HIT-Endo study included pediatric craniopharyngioma patients (%lt;18 years of age at the time of diagnosis) and diagnosed before the year 2000. The GdB was evaluated in a cohort of 108 patients following a median follow-up time of 16 years. The GdB at follow-up was evaluated in relation to endocrine, ophthalmological, neuropsychological, and psychosocial factors. 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 was associated with lower levels education, higher body mass index (BMI SDS), more severe visual impairment, and hypothalamic involvement of the tumor. Patients with a GdB of 100 reported impairments in social and occupational settings, as well as loss of physical and cognitive function, fatigue, dyspnea, and pain problems. In addition, they performed worse on the German Daily Life Ability Scale (FMH) than individuals with lower GdBs. The GdB reflects the long-term effects of craniopharyngioma during childhood and adolescence and is linked to physical and psychosocial problems. A low functional capacity, as measured by FMH scale, may indicate the eligibility for a higher GdB of craniopharyngioma survivors. Presentation: Thursday, June 15, 2023</description><identifier>ISSN: 2472-1972</identifier><identifier>EISSN: 2472-1972</identifier><identifier>DOI: 10.1210/jendso/bvad114.1470</identifier><language>eng</language><publisher>US: Oxford University Press</publisher><subject>Pediatric Endocrinology</subject><ispartof>Journal of the Endocrine Society, 2023-10, Vol.7 (Supplement_1)</ispartof><rights>The Author(s) 2023. 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Boekhoff: None. M. Eveslage: None. J. Beckhaus: None. C. Friedrich: None. H.L. Muller: None. Craniopharyngiomas are rare low-grade embryonic malformational tumors of the sellar/parasellar area. After a diagnosis during childhood and adolescence, endocrine and hypothalamic long-term sequalae affect the prognosis. Financial resources for psychological rehabilitation and involvement of craniopharyngioma survivors are made available by a legal status of the degree of disability (GdB), according to the German Social Code Book V. This study analyzed the relationship between clinical/psychosocial traits and quality of life (QoL) measures and the resulting GdB. The HIT-Endo study included pediatric craniopharyngioma patients (%lt;18 years of age at the time of diagnosis) and diagnosed before the year 2000. The GdB was evaluated in a cohort of 108 patients following a median follow-up time of 16 years. The GdB at follow-up was evaluated in relation to endocrine, ophthalmological, neuropsychological, and psychosocial factors. 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 was associated with lower levels education, higher body mass index (BMI SDS), more severe visual impairment, and hypothalamic involvement of the tumor. Patients with a GdB of 100 reported impairments in social and occupational settings, as well as loss of physical and cognitive function, fatigue, dyspnea, and pain problems. In addition, they performed worse on the German Daily Life Ability Scale (FMH) than individuals with lower GdBs. The GdB reflects the long-term effects of craniopharyngioma during childhood and adolescence and is linked to physical and psychosocial problems. A low functional capacity, as measured by FMH scale, may indicate the eligibility for a higher GdB of craniopharyngioma survivors. 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Boekhoff: None. M. Eveslage: None. J. Beckhaus: None. C. Friedrich: None. H.L. Muller: None. Craniopharyngiomas are rare low-grade embryonic malformational tumors of the sellar/parasellar area. After a diagnosis during childhood and adolescence, endocrine and hypothalamic long-term sequalae affect the prognosis. Financial resources for psychological rehabilitation and involvement of craniopharyngioma survivors are made available by a legal status of the degree of disability (GdB), according to the German Social Code Book V. This study analyzed the relationship between clinical/psychosocial traits and quality of life (QoL) measures and the resulting GdB. The HIT-Endo study included pediatric craniopharyngioma patients (%lt;18 years of age at the time of diagnosis) and diagnosed before the year 2000. The GdB was evaluated in a cohort of 108 patients following a median follow-up time of 16 years. The GdB at follow-up was evaluated in relation to endocrine, ophthalmological, neuropsychological, and psychosocial factors. 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 was associated with lower levels education, higher body mass index (BMI SDS), more severe visual impairment, and hypothalamic involvement of the tumor. Patients with a GdB of 100 reported impairments in social and occupational settings, as well as loss of physical and cognitive function, fatigue, dyspnea, and pain problems. In addition, they performed worse on the German Daily Life Ability Scale (FMH) than individuals with lower GdBs. The GdB reflects the long-term effects of craniopharyngioma during childhood and adolescence and is linked to physical and psychosocial problems. A low functional capacity, as measured by FMH scale, may indicate the eligibility for a higher GdB of craniopharyngioma survivors. Presentation: Thursday, June 15, 2023</abstract><cop>US</cop><pub>Oxford University Press</pub><doi>10.1210/jendso/bvad114.1470</doi><oa>free_for_read</oa></addata></record>
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subjects Pediatric Endocrinology
title THU220 Legal Degree Of Disability In Childhood-Craniopharyngioma Survivors After Follow-up - Results Of The Hit-Endo Study
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