Current projects
Thanks to improved treatments, an increasing number of children and adolescents are surviving cancer. However, intensive oncological treatments can have adverse long-term health consequences (late effects), lowering quality of life. Many childhood, adolescent and young adult cancer survivors (CAYACS) are unaware of the possibility of their risk for late effects.
The European project will provide children and young adults who have survived cancer with e-health tools designed specifically for and with them to help them manage their health. This is a collaborative effort between 32 institutions from 16 European countries.
Through the creation of this digital content, access to psychosocial resources and informative material is ensured. The support platforms will be available in 15 different languages, which helps to promote equal access to high quality resources. The goal is that childhood cancer survivors and their loved ones can enhance their wellbeing and quality of life by consulting the online content that will be developed within the e-QuoL project.
In a first step, existing e-health tools for survivors and parents are being explored, such as websites from parent organizations, hospitals or other childhood cancer websites. A systematic content analysis of these sites will determine features and content that is currently available. The learnings from this exploration will shape the choices made regarding the e-QuoL project support resources.
Second, the team at the University of Lucerne is responsible on a psychosocial needs assessment survey to assess the needs of childhood cancer survivors and their support network (parents, siblings, grandparents, partners). The survey is available in 15 different languages and was created in collaboration with the other e-QuoL project partners. Results will inform the creation of the information for e-health tools.
Beyond the psychosocial needs assessment, the team at the University of Lucerne will develop the content for a website to provide the required information and support to family members and friends of survivors.
Funding: The e-QuoL project, number 101136549, is funded by the European Union, and the Swiss State Secretariat for Education, Research and Innovation (SERI)
Project Leader: Prof. Gisela Michel, PhD
Team: Anica Ilic, PhD; Katharina Roser, PhD; Kathleen Ostheim, MSc; Aline Wechsler
Duration: January 2024 – December 2027
Childhood cancer affects the daily lives of survivors and their families in many ways. Research has shown that it can be challenging to navigate the complex healthcare and social services system after childhood cancer. However, little is known about the difficulties parents and survivors face with insurance and social services. In this project, we focus on three different areas where problems might arise: problems with insurance, legal, and financial issues.
The overall objective is to investigate problems with insurance, legal and financial issues after childhood cancer in Switzerland. Furthermore, we aim to provide recommendations for the health and social insurance system and for experts.
The project consists of three studies.
Specifically, we aim to:
1) summarize what is known internationally about parents’ and childhood cancer survivors’ insurance, legal, and financial problems (study 1, systematic literature review);
2) describe the experiences of parents and survivors, the services available to prevent such problems, the facilitators and barriers to make use of these services, and the coping strategies used when experiencing problems (study 2, focus groups with parents and survivors);
3) develop agreed-upon recommendations for these insurance, legal and financial problems after childhood cancer by experts, parents, and childhood cancer survivors (study 3; focus groups with stakeholders).
To achieve these goals, three steps will be taken. First, results from various international scientific studies will be summarized and analyzed by means of a systematic review (study 1). In a second step, information on insurance, legal and financial challenges after childhood cancer will be collected through focus group discussions with parents and survivors (study 2). In step 3, the results from steps 1 and 2 will be assessed in focus groups with professionals from the fields of pediatric oncology, health insurance, and social insurance, as well as parents and survivors (study 3).
The main outcome of this project will be a comprehensive list of recommendations specific to pediatric oncology in Switzerland.
Currently, difficulties with insurance, law, and finances are not well-assessed in parents and survivors who experienced childhood cancer. However, this is critical to support those affected. The project will describe the insurance, legal and financial issues and aims to develop recommendations for health care professionals and other experts working in the Swiss healthcare and social security system. Other goals of the project are to raise awareness of problems that parents or survivors might experience and to establish interventions that promote and support family adaptation, problem-solving, coping, and resilience. This is important not only for families who have experienced childhood cancer, but also for families with other seriously ill children.
Funding: Swiss Cancer Research (KFS-5384-08-2021)
Project leader: Dr. Katharina Roser
Team: Dr. Sonja Kälin; Martina Ospelt, MSc
Collaborators: Dr. Manya Jerina Hendriks; Dr. Luzius Mader
Duration: October 2022 – September 2025
Cancer in adolescents and young adults (AYAs, 15-39 years of age) is different from cancer in children or in older adults. Due to the age at diagnosis of this group, important developmental tasks such as employment and education can be affected. However, research in AYAs with cancer is still limited. Therefore, there is a demand for investigating cancer epidemiology of AYA cancer and establishing well-designed studies to address psychosocial health of AYA cancer survivors.
The project consists of two studies and aims to:
- provide a detailed description of the epidemiology of AYA cancer in Switzerland (Epidemiology Study);
- assess psychosocial health, psychosocial problems and needs in AYA cancer survivors in Switzerland. (Psychosocial Health Study)
Study (i) is a retrospective, registry-based epidemiological study. AYAs diagnosed with cancer at the age of 15-39 years in Switzerland and registered in one of the cantonal cancer registries will be included in the analysis. Epidemiological measures including incidence rates for different cancer types and age groups and corresponding mortality and survival rates will be calculated for Switzerland.
Study (ii) consists of a cross-sectional online questionnaire survey in AYA cancer survivors in collaboration with cantonal cancer registries in Switzerland. We will include individuals having been diagnosed with cancer at the age of 15 to 39 years and having survived cancer for at least 2 years. The questionnaire will address their psychosocial situation (e.g. educational achievements, employment situation, partnership, health-related quality of life, and psychological distress), their psychosocial problems and needs at diagnosis and at time of study. We will describe psychosocial health in AYA cancer survivors in Switzerland in detail and compare it to available samples of the general population.
The project will give for the first time a detailed overview of the epidemiology of AYA cancer in Switzerland from a public health perspective. In addition, it will provide insights into psychosocial problems AYA cancer survivors might encounter during the cancer trajectory. The project will help to develop new and adapt existing support services for AYA cancer patients and survivors and consequently help to improve health and well-being of AYA cancer survivors.
Funding: Palatin-Stiftung, Zentralschweizer Krebsliga, Avenira Stiftung, and two anonymous foundations
Project leader: Dr. Katharina Roser
Team: Dr. Daniela Dyntar, Céline Bolliger, Michaela Kaufmann and Sebastian Thackwell
Duration: January 2020 – June 2024
