About 80% of cancer patients between the age of 18 to 39 survive their disease. They have to cope with different problems than children or older adults. They suffer from short- and long-term social burden as well as from physical disorders associated with the disease or cancer treatment. The objective of this project is to consult patients on options for social support to avert financial problems and to provide medical help to reduce disease- or therapy-associated disorders. The consultation takes place in collaboration with the attending physicians.
The Young Cancer Portal of the German Foundation for Young Adults with Cancer is a nation-wide, open-access service for young patients. The advisory process rests on an independent softwaredatabase. Patients are initially asked to register with their personal information and to raise their first questions. A questionnaire captures their current situation regarding the disease status and daily life. Expert advice is given in writing, by phone, or in person by a regionally assigned oncologist with extra training. In addition, a special access offers the exchange of expertise of for medical professionals. The protected database allows an anonymous collection and systematic analysis of the data by the foundation.
The module for social law questions started on Nov 24, 2015, the module for endocrinological ques-tions on Sep 22, 2016, and the module on immune defects in Aug 2017. Thus far, 495 people have registered and 345 patients have been advised. Female patients represent 72% of the pool, male patients 28%. The average median age is 30.5 years (ranges from 18 to 52).
The Young Cancer Portal is unique throughout Germany and offers a new way for expert-patient-communication with high acceptance by long-term survivors. The portals basic structure is appropriate for a enables the modular addition of topics. Modules for long-term effects and integrative oncology will be established.
Clinical trial identification
Legal entity responsible for the study
German Foundation for Young Adults with Cancer.
Has not received any funding.
All authors have declared no conflicts of interest.