Survivorship and Long-Term Follow-up Care Working Group
Dr. Eva Maria Tinner, Bern
Chair
Dr. med. Maria Otth, St.Gallen & Zurich
Vice Chair
Background
The Long-Term Follow-up Care Working Group is a formal working group within the Swiss Society of Pediatric Hematology and Oncology (SSPHO).
Survivorship is an integral part of cancer care. It starts at diagnosis and continues throughout the lifespan of (former) cancer patients. Survivorship care consists of different domains: prevention, surveillance for recurrence and secondary cancers, physical and psychosocial late effects and their management. Survivorship care is performed in all pediatric hematology-oncology centers in Switzerland to different extents and based on different guidelines (e.g., COG, IGHG) or recommendations (e.g., from treatment protocols). This may lead to different long-term follow-up care programs in survivors with the same underlying diagnosis and treatment received.
Harmonization of follow-up care between the centers is important for the following reasons:
Exchange between survivors with the same diagnosis and treatment as different follow-up may result in insecurities.
Differences in tests performed or documents handed out may hinder negotiation with insurance cost cover.
The pediatric hematology-oncology community in Switzerland is small and collaboration should be strengthened instead of having individual approaches.
Aims
We aim to improve long-term follow-up care of Swiss childhood cancer survivors through the following steps:
Assess the landscape on how survivorship care of childhood cancer survivors is performed in Switzerland.
Define the needs of Swiss childhood cancer survivors, especially when they become adults, and work on risk-stratified long-term follow-up care and transition processes which meet the Swiss survivors’ needs.
Harmonize survivorship care in Switzerland (e.g., use of same long-term follow-up care guidelines, align extent of screening and tests performed).
Achieve political goals (e.g., direct reimbursement of treatment summaries by insurance/integration into medical tariff structure; support patient support groups in tackling inequalities of childhood cancer survivors such as for military and civilian services).
Perform collaborative and multicenter research on national/international level.
Collaborate with other national survivorship groups and take survivors’ perspective into account.
Responsibilities
Chair/Vice-Chair responsibilities:
Organization of regular working group meetings.
Defining the agenda and taking/distributing minutes.
Sharing progress of the working group with the SSPHO community at least annually.
Member responsibilities:
Active participation in the working group.
Support the improvement of survivorship care for Swiss childhood cancer survivors.
