63 research outputs found
Palliative care of people with culturally and linguistically diverse backgrounds
No full textZusammenfassung Zahlreiche Faktoren (sprachliche Barrieren, kulturelle und religiöse Unterschiede, niedriger sozioökonomischer Status, niedriges Bildungsniveau, fehlende Unterstützung durch traditionelle Gemeinschaften, Trauma‑/Verlusterfahrungen) können die Betreuung von lebensverkürzend erkrankten Kindern und Jugendlichen mit kulturell und sprachlich diversem Hintergrund beeinflussen. Ein überwiegend gut etabliertes Netzwerk bestehender Palliativ- und Hospizeinrichtungen erlaubt die integrierte Versorgung und vorausschauende Versorgungsplanung von betroffenen Familien. Eine empathische (auch nonverbale) Kommunikation, der kontinuierliche, offene Dialog sowie interkulturelle Kompetenz bilden die Basis für den Aufbau und die Erhaltung stabiler emotionaler Bindungen zwischen Betroffenen und Betreuungspersonen und die Entwicklung von Bewältigungsstrategien.Abstract Numerous parameters (language barriers, cultural and religious differences, low socioeconomic and educational statuses, lack of traditional community support, traumatic and loss experiences) can influence the palliative care of children and adolescents with life-limiting diseases and culturally and linguistically diverse backgrounds. A predominantly well-established network of palliative and hospice care services enables the integrated management and advance care planning for affected families. An empathic (also nonverbal) communication, continuous open dialogue and intercultural competence form the basis for the establishment and maintenance of stable emotional relationships between patients, families and palliative care providers and the development of coping strategies.Zusammenfassung Zahlreiche Faktoren (sprachliche Barrieren, kulturelle und religiöse Unterschiede, niedriger sozioökonomischer Status, niedriges Bildungsniveau, fehlende Unterstützung durch traditionelle Gemeinschaften, Trauma‑/Verlusterfahrungen) können die Betreuung von lebensverkürzend erkrankten Kindern und Jugendlichen mit kulturell und sprachlich diversem Hintergrund beeinflussen. Ein überwiegend gut etabliertes Netzwerk bestehender Palliativ- und Hospizeinrichtungen erlaubt die integrierte Versorgung und vorausschauende Versorgungsplanung von betroffenen Familien. Eine empathische (auch nonverbale) Kommunikation, der kontinuierliche, offene Dialog sowie interkulturelle Kompetenz bilden die Basis für den Aufbau und die Erhaltung stabiler emotionaler Bindungen zwischen Betroffenen und Betreuungspersonen und die Entwicklung von Bewältigungsstrategien.Abstract Numerous parameters (language barriers, cultural and religious differences, low socioeconomic and educational statuses, lack of traditional community support, traumatic and loss experiences) can influence the palliative care of children and adolescents with life-limiting diseases and culturally and linguistically diverse backgrounds. A predominantly well-established network of palliative and hospice care services enables the integrated management and advance care planning for affected families. An empathic (also nonverbal) communication, continuous open dialogue and intercultural competence form the basis for the establishment and maintenance of stable emotional relationships between patients, families and palliative care providers and the development of coping strategies
Radiation-induced gliomas represent H3-/IDH-wild type pediatric gliomas with recurrent PDGFRA amplification and loss of CDKN2A/B
No full textAbstract Long-term complications such as radiation-induced second malignancies occur in a subset of patients following radiation-therapy, particularly relevant in pediatric patients due to the long follow-up period in case of survival. Radiation-induced gliomas (RIGs) have been reported in patients after treatment with cranial irradiation for various primary malignancies such as acute lymphoblastic leukemia (ALL) and medulloblastoma (MB). We perform comprehensive (epi-) genetic and expression profiling of RIGs arising after cranial irradiation for MB (n = 23) and ALL (n = 9). Our study reveals a unifying molecular signature for the majority of RIGs, with recurrent PDGFRA amplification and loss of CDKN2A/B and an absence of somatic hotspot mutations in genes encoding histone 3 variants or IDH1/2 , uncovering diagnostic markers and potentially actionable targets.Abstract Long-term complications such as radiation-induced second malignancies occur in a subset of patients following radiation-therapy, particularly relevant in pediatric patients due to the long follow-up period in case of survival. Radiation-induced gliomas (RIGs) have been reported in patients after treatment with cranial irradiation for various primary malignancies such as acute lymphoblastic leukemia (ALL) and medulloblastoma (MB). We perform comprehensive (epi-) genetic and expression profiling of RIGs arising after cranial irradiation for MB (n = 23) and ALL (n = 9). Our study reveals a unifying molecular signature for the majority of RIGs, with recurrent PDGFRA amplification and loss of CDKN2A/B and an absence of somatic hotspot mutations in genes encoding histone 3 variants or IDH1/2 , uncovering diagnostic markers and potentially actionable targets
LONG-TERM FOLLOW-UP OF CHILDREN WITH EPENDYMOMA TREATED ACCORDING TO HIT-TRIALS 1987-1998
No full textLONG-TERM FOLLOW-UP OF CHILDREN WITH EPENDYMOMA TREATED ACCORDING TO HIT-TRIALS 1987-1998
No full textPostponed Is Not Canceled: Role of Craniospinal Radiation Therapy in the Management of Recurrent Infant Medulloblastoma-An Experience From the HIT-REZ 1997 & 2005 Studies
No full textPurpose: To evaluate the efficacy of craniospinal irradiation (CSI) in the management of recurrent infant medulloblastoma after surgery and chemotherapy alone. Methods and Materials: Seventeen pediatric medulloblastoma patients registered in the HIT-REZ 1997 and 2005 studies underwent CSI as salvage treatment at first recurrence. All patients had achieved complete remission after first-line treatment consisting of surgery and chemotherapy. Eleven patients showed metastatic disease at relapse. Five patients underwent surgery prior to radiation therapy, which resulted in complete resection in 1 case. In 1 patient, complete resection of the residual tumor was performed after CSI. Eleven patients received chemotherapy prior, 6 patients during and 8 patients after CSI. All patients received CSI with a median total dose of 35.2 Gy, and all but 1 received a boost to the posterior fossa (median total dose, 55.0 Gy). Metastases were boosted with an individual radiation dose, depending on their location and extent. Results: During a median follow-up time of 6.2 years since recurrence, 11 patients showed progressive disease and died. Median progression-free (overall) survival was 2.9 +/- 1.1 (3.8 +/- 0.8) years. Progression-free survival (PFS) rates at 1, 3, and 5 years were 88% +/- 8%, 46% +/- 12%, and 40% +/- 12%, respectively. Overall survival (OS) rates at 1, 3, and 5 years were 94% +/- 6%, 58% +/- 12%, and 39% +/- 12%, respectively. For 11 patients with classic medulloblastoma, 3-year (and 5-year) PFS and OS were 62% +/- 15% and 72% +/- 14% (52% +/- 16% and 51% +/- 16%), respectively. On univariate analysis, metastatic disease was not associated with poorer progression-free and overall survival. Conclusions: Our results suggest that salvage treatment of relapsed medulloblastomas consisting of CSI and chemotherapy offers a second chance for cure, even for patients with classic histological findings. Metastatic disease at relapse did not have an impact on survival. However, this may be explained by the small number of patients. (C) 2014 Elsevier Inc
Jugend und Umwelt soziale Orientierungen und soziale Basisprozesse im regionalen Vergleich
No full textA survey on worries of pregnant women - testing the German version of the Cambridge Worry Scale
No full textBackground: Pregnancy is a transition period in a woman's life characterized by increased worries and anxiety. The Cambridge Worry Scale (CWS) was developed to assess the content and extent of maternal worries in pregnancy. It has been increasingly used in studies over recent years. However, a German version has not yet been developed and validated. The aim of this study was (1) to assess the extent and content of worries in pregnancy on a sample of women in Germany using a translated and adapted version of the Cambridge Worry Scale, and (2) to evaluate the psychometric properties of the German version. Methods: We conducted a cross-sectional study and enrolled 344 pregnant women in the federal state of Baden-Wurttemberg, Germany. Women filled out structured questionnaires that contained the CWS, the Spielberger-State-Trait-Anxiety Inventory (STAI), as well as questions on their obstetric history. Antenatal records were also analyzed. Results: The CWS was well understood and easy to fill in. The major worries referred to the process of giving birth (CWS mean value 2.26) and the possibility that something might be wrong with the baby (1.99), followed by coping with the new baby (1.57), going to hospital (1.29) and the possibility of going into labour too early (1.28). The internal consistency of the scale (0.80) was satisfactory, and we found a four-factor structure, similar to previous studies. Tests of convergent validity showed that the German CWS represents a different construct compared with state and trait anxiety but has the desired overlap. Conclusions: The German CWS has satisfactory psychometric properties. It represents a valuable tool for use in scientific studies and is likely to be useful also to clinicians
Newly Diagnosed Metastatic Intracranial Ependymoma in Children: Frequency, Molecular Characteristics, Treatment, and Outcome in the Prospective HIT Series
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