Commitment to the topic of „Oncological care for people with intellectual developmental disabilities“

Commitment to the topic of „Oncological care for people with intellectual developmental disabilities“

The care situation for people with intellectual disabilities and cancer in Germany is still largely unknown. Data from other European and non-European countries suggest that – with the same incidence of illness as people with intellectual disabilities – there are in some cases considerable oncological care deficits for this vulnerable group. It can be assumed that the German healthcare system is similarly inadequately designed to meet the special needs of patients with intellectual disabilities suffering from cancer, as has already been described for other European and non-European countries.
Due to the relevance of this problem, the DKG is involved in a self-imposed thematic focus on „Oncological care for people with intellectual developmental disabilities“, including the following:

  • Publication of an overview paper on the oncological care situation of people with intellectual disabilities in collaboration with experts (see publications)
  • Development of brochures for people with intellectual disabilities in easy language, which provide information about oncological screening and oncological treatment options in target group-oriented language. The brochures were adapted to the situation in Germany on the basis of existing French brochures from the Oncodéfi Association. They are available in places accessible to the target group, e.g. Lebenshilfe meeting points, and can also be ordered free of charge via the following link: https://www.krebsinformationen-leichte-sprache.de/ A reprint of the brochures is being planned.
  • We are currently preparing a secondary data analysis in cooperation with the BARMER Institute for Health Systems Research (bifg), which will look at cancer incidence and age at diagnosis in people with and without intellectual disabilities, among other things.
  • In February 2024, the article „Krebserkrankungen bei Menschen mit einer Intelligenzminderung in Deutschland: Prävalenzen, Genetik und Versorgungslage“ was published in the Bundesgesundheitsblatt with the collaboration of the DKG (see publications).
  • From April 2024, the DKG will participate in the EU Joint Action EUCanScreen and will take over the leadership of a „Task on Screening of People with Intellectual Disabilities“.

We coorperate, among others, with
Lebenshilfe e. V.
Oncodéfi Association
Deutsche Gesellschaft für Medizin für Menschen mit geistiger oder mehrfacher Behinderung (DGMGB) e. V.
Ärztekammer Nordrhein
Arbeitsgemeinschaft Soziale Arbeit in der Onkologie der DKG e. V (ASO)
BARMER Institut für Gesundheitssystemforschung (bifg)

Funding
Stiftung Deutsche Krebsgesellschaft (for designing and disseminating the brochures)

Duration
January 2022 – unlimited
January 2022 – June 2022 for designing and disseminating the brochures

Publications
find the brochures here
see publications

Contact
PD Dr. rer. medic. Christoph Kowalski
Dr. med. Nora Tabea Sibert
Dr. rer. medic. Clara Breidenbach