Network Oncolgy Specialist Advisory Service – A Survey of the Psychosocial Situation of Long Term Cancer Survivors During Childhood or Adolescents

Author:

Toenne Rebecca1,Baumeister Rebecca1,Koch Anika1,Lindhorst Kristin1,Reinhardt Dirk2,Kremeike Kerstin3

Affiliation:

1. NOF, Netzwerk für die Versorgung schwer kranker Kinder und Jugendlicher e.V., Hannover, Deutschland

2. Paediatric Hematology and Oncology, Medical Center, University of Essen, Essen, Deutschland

3. Center of Palliative Medicine, University Hospital Cologne Center of Palliative Medicine, Koln, Deutschland

Abstract

Abstract Background The number of long term cancer survivors during childhood or adolescence is increasing steadily. Survivors often suffer from physical or psychosocial long term effects. There is currently little data on the arrangement of long term aftercare in the field of psychosocial care. Methods In November 2017 a questionnaire was sent to 1900 cancer survivors aged between 18 and 35 years whose diagnosis dated at least five years prior. The obtained data serve as a condition and needs assessment, how the (psychosocial) long-term aftercare is perceived by the survivors and what else is desired. The analysis was conducted using descriptive statistics as well as the calculation of bivariate correlations. Results The response rate was 54.9% (n=1.043). The median interval from the first diagnosis was 20 years. In total 666 survivors (63.9%) stated that they suffered from at least one long term effect. Within this, especially neurocognitive themes played a role. 87.2% of the respondents had the feeling that they had overcome the illness/therapy well. Conclusion Through a stronger patient-focussed orientation concerning the current care and advisory services, the situation of long term survivors could be improved. This especially includes access to relevant information that focuses on the available psychosocial and welfare services, as well as to advisory and care services. Additionally, the development and expansion of care structures in the areas of neurocognition and psychotherapy is important to ensure long term participation attendance.

Publisher

Georg Thieme Verlag KG

Subject

Pediatrics, Perinatology, and Child Health

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