Description and Goals of the Project
In the past decades childhood cancer survival has constantly improved reaching an overall 5-year survival of approximately 80%. However, more than 60% of survivors develop physical and/or psychological late effects. It is therefore important for many survivors that they attend life-long follow-up care.
Several guidelines for long-term follow-up of childhood, adolescent and young adult (CAYA) cancer survivors have been developed and published. However, the existing guidelines are often inconsistent, and some are not up to date anymore.
The aim of the proposed study is to develop clinically relevant guidelines on fatigue, psychosocial issues, mental health problems and to be used internationally in follow-up care of CAYA cancer survivors.
Our study found that many survivors suffer from cancer-related fatigue (10 to 85%, depending on the study) – even years after treatment ends. Survivors after radiotherapy, with psychological distress, who experience late effects or pain, and older survivors are at increased risk for fatigue.
We recommend surveillance of fatigue in every follow-up appointment. In our study, we describe suitable and reliable measures for fatigue in survivors. Survivors who are diagnosed with fatigue should be referred to a specialist. Additionally, education about fatigue, physical activity, relaxation and mindfulness, and cognitive behavioural therapy can help to reduce fatigue in survivors.
The scientific article with the detailed results and recommendations was published in the «Journal of Cancer Survivorship» in August 2020, and is freely accessible: https://link.springer.com/article/10.1007/s11764-020-00904-9
We develop recommendations for the surveillance of educational and vocational problems. We are still working on this clinical practice guideline.
Mental Health Problems
We develop recommendations for the surveillance of depression, anxiety, post-traumatic stress, suicidal ideation, suicide, emotional/psychological distress, externalizing symptoms (hyperactivity), and schizophrenia. We are still working on this clinical practice guideline.
Information about the Project Team and Funding
This project is a subproject of the “International Guidelines Harmonization Group for Late Effects of Childhood Cancer” (IGHG; http://www.ighg.org/). This group aims to harmonize surveillance recommendations for follow-up care of CAYA cancer survivors. The IGHG also closely collaborates with the European project PanCareSurFup (www.pancaresurfup.eu ).
The project team consists of the co-chairs Gisela Michel (University of Lucerne) and Jordan Gilleland-Marchak (USA), the project coordinator Salome Christen (University of Lucerne) and a large team of scientists, psychologists, pediatric oncologists and survivors from Switzerland and beyond.
Funding: Krebsliga Zentralschweiz
Project leaders: Prof. Dr. Gisela Michel, Jordan Gilleland Marchak PhD
Team in Lucerne: Salome Christen, Dr. Katharina Roser, Dr. Erika Harju, Anica Ilic
Duration: January 2016 – December 2017
With our online survey we want to describe how the Corona pandemic has changed our lives.
In spring 2020 (first wave of the Corona pandemic), 1757 people from the Swiss population completed our online questionnaire. We assessed health, well-being (for example, anxiety, depressive symptoms but also positive changes) and quality of life using standardised questions. We also collected data on the economic and social situation of the participants. For example, we asked how their professional situation had changed or how parents cared for their children during this time.
In an earlier study in 2015-2016, we had already surveyed the Swiss general population on these topics (Study on health and well-being). This allows us to compare the situation during the first wave of the Corona pandemic with the situation before the pandemic. With this study we will be able to show the impact the Corona pandemic has had on the Swiss population. The results will help to describe the burden on the Swiss population and to identify possible support measures.
Funding: Research Commission of the University of Lucerne
Project leaders: Prof. Dr. Gisela Michel, Dr. Katharina Roser, Dr. Grit Sommer (University of Bern), Dr. Vera Mitter (Universities of Bern and Oslo)
Team: Dr. Daniela Dyntar, Dr. Julia Baenziger, Anica Ilic, Dr. Luzius Mader (University of Bern)
Duration: March 2020 – April 2021
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
Childhood cancer is considered the second most common cause of death in children over 1 year of age in developed countries. Unfortunately, despite improvements in treatment in past decades, about 20% of children diagnosed with cancer die, meaning that almost 1 out of 5 families have to face such a devastating loss. The death of a child has been described as one of the most difficult events a family can face affecting each family member in a different and unique way.
Bereavement care, as one of the stages of paediatric palliative care, is committed to improve the quality of life and mitigate suffering of the bereaved family in a holistic manner. However, little is known about the bereavement care services that have been implemented in Switzerland and Europe. Additionally, not much is known about the needs of bereaved parents and how they fare on the long term. Finally, it is important to find out more about protective and/or risk factors of bereaved parents that might influence the long-term psycho-social outcomes in bereaved families.
The project’s main goal is to improve the bereavement support available to parents whose child has died from cancer. We have three specific aims:
- Aim: Provide an overview on parents’ grieving and bereavement process after their child has died from cancer.
Method: Systematic review of the literature of published studies
- Aim: Assess the characteristics of bereavement services, as part of paediatric palliative care at the end-of-life, which are offered to patients and family members in specialized paediatric oncology centres in Europe.
Method: A cross-sectional survey with healthcare professionals working at specialized paediatric oncology centres in Europe
- Aim: Analyse the long-term psychological, and socio-demographic outcomes and support needs of bereaved parents in comparison to parents of long-term childhood cancer survivors, and parents from the general population in Switzerland.
Method: A mixed methods approach will be used: a) in-depth interviews and b) a cross-sectional survey.
Funding: This project has received funding from the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie grant agreement No 801076, through the SSPH+ Global PhD Fellowship Programme in Public Health Sciences (GlobalP3HS) of the Swiss School of Public Health” and Swiss Cancer League grant No KFS-4995-02-2020
Project leader: Prof. Dr. Gisela Michel
Team: Dr. Eva De Clercq, PhD; Eddy Carolina Pedraza, MD; Anna Katharina Vokinger, MA
Collaborators: PD Dr. med. Eva Bergsträsser (University Children’s Hospital Zurich); Dr. med. Eva Maria Tinner (University Children’s Hospital Bern); Prof. Dr. med. Katrin Scheinemann (Children’s Hospital, Aarau); Dr. Manya Hendriks
Duration: September 2019 – July 2023
Copyright: Dyntar Photography. https://www.mein-fotograf-luzern.ch/
Nowadays, most children suffering from cancer can be cured. However, a cancer diagnosis in a child is often a disruptive moment for the entire family system: everyday life is turned upside down, the role of the parents can change and siblings may experience feelings of guilt or fear. Grandparents are often a great support for the family.
In our project, we would like to investigate the effects that the illness of the grandchild has on the grandparents: for example, in terms of quality of life, potential stress and the possible changes in relationships within the family or at work. We also want to know what the grandparents’ needs for information are and what kind of support they could use in this difficult time.
The development of information materials and support services specifically tailored to the needs of grandparents who have a child with cancer in their family will also be helpful to grandparents and families who have a child with another disease or impairment.
If you are interested in participating, or simply want to receive more information, please contact us:
Pauline Holmer, Research Assistant
E-mail: pauline.holmer Phone: 041 229 59 67 @ unilu.ch
Gisela Michel, Professor of Health Sciences and Medicine
E-mail: gisela.michel@ unilu.ch
Funding: Swiss National Science Foundation (Grant No: 10001C_182129/1)
Approval: Ethics Committee Northwestern and Central Switzerland (EKNZ Study No. 2020-01409)
Project leader: Prof. Dr. Gisela Michel, Prof. Dr. Katrin Scheinemann
Team: Dr. Daniela Dyntar, Dr. Katharina Roser, Cristina Priboi, Anica Ilic, Pauline Holmer, Nadja Mühlebach, Luana Marbot
Duration: April 2019 - March 2023
From left to right: Salome Christen, Gisela Michel, Daniela Dyntar, Cristina Priboi, Anica Ilic, Katharina Roser, Julia Baenziger
Copyright: Dyntar Photography. https://www.mein-fotograf-luzern.ch/
The EU-funded project PanCareFollowUp looks at how to best deliver survivorship care to survivors of childhood and adolescent cancer in Europe. Survival rates have improved over the last few decades but there is still a long way to go in long-term follow-up care for survivors of childhood cancer. This new focus in care and evaluation of care for survivors of childhood cancer is coordinated by Prof Leontien Kremer from the Princess Máxima Center for Pediatric Oncolology in Utrecht, The Netherlands. Fourteen partners from 10 European countries (Austria, Belgium, Czech Republic, Denmark, Ireland, Italy, The Netherlands, Sweden, Switzerland, United Kingdom) are participating.
PanCareFollowUp is aiming at delivering care according to recently developed guidelines using an innovative model for person centred care that empowers survivors and supports self-management. The objectives of PanCareFollowUp are to:
- Develop the PanCareFollowUp Care intervention, based on state-of-the-art knowledge, summarised in guidelines, about what regular surveillance individual survivors need and how it can be best delivered using person-centred care approaches
- Test the PanCareFollowUp Care intervention in four countries (Belgium, Czech Republic, Italy and Sweden) in partnership with 800 survivors, measuring effectiveness, value and cost-effectiveness
- Test the feasibility of using the European Survivorship Passport in delivering the PanCareFollowUp Care intervention in Italy and explore the development of an App
- Develop the PanCareFollowUp Lifestyle intervention, a person-centred eHealth lifestyle intervention tailored to meet the individual needs of survivors
- Test the PanCareFollowUp Lifestyle intervention in the Netherlands in partnership with 60 survivors, looking at effectiveness, acceptability and feasibility
- Develop materials to support replication of the PanCareFollowUp Care and Lifestyle interventions in new countries across Europe in the future
- Widely disseminate and communicate the available research to survivors and their families, researchers, healthcare professionals, healthcare decision-makers and policy-makers
The University of Lucerne is participating in Work Package 3, responsible for the development of the patient reported outcome measures (PROMs; Prof. Gisela Michel) and the health economic outcomes (Prof. Stefan Boes).
Funding: This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 824982
Project team at University of Lucerne: Prof. Dr. Gisela Michel, Prof. Dr. Stefan Boes, Dr. Katharina Roser
Duration: January 2019 – December 2023
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
You can also download a pdf file with a description of our current and previous projects (English and German in the same file).