Thanks to improvement in treatments, overall childhood cancer survival has improved to approximately 80% in most high-income countries over the past decades. However, survivors of childhood cancer are at considerable risk for a wide range of health conditions, including musculoskeletal late effects, cancer-related fatigue, and physical functioning deficits. Rehabilitation services like physiotherapy contribute to improving physical functioning and physical activity in patients with musculoskeletal problems or fatigue.
Overall, we aim to investigate the prevalence of musculoskeletal late effects, cancer-related fatigue, and physiotherapy utilization in survivors of childhood cancer, and to investigate physical functioning and physical activity in survivors with musculoskeletal late effects and in survivors with cancer-related fatigue.
This study will contribute to improving long-term follow-up care and rehabilitation services for survivors of childhood cancer with musculoskeletal late effects, cancer-related fatigue, or physical functioning deficits to ultimately minimize the burden of disease for survivors and improve their quality of life.
Funding: Vontobel-Stiftung, Faculty of Health Sciences and Medicine of the University of Lucerne, Krebsliga Zentralschweiz, Avenira Stiftung, and one anonymous foundation
Project Leader: Salome Christen MA
Team: Prof. Dr. Gisela Michel
Collaborators: Prof. Dr. med. Claudia Kuehni, Bern University (Principal Investigator of the Swiss Childhood Cancer Survivor Study; Head of the Childhood Cancer Registry)
Duration: September2021 – Dezember 2024
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 high-income 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 in 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 1: Provide an overview on parents’ coping strategies after their child has died from cancer.
Method: Systematic review of the literature of published studies
Aim 2: Describe the availability and characteristics of palliative care services including bereavement resources 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 3: 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 was 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; Dr. Peter Francis Raguindin; 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); Dr. Manya Hendriks
Duration: September 2019 – July 2024
A childhood cancer diagnosis is devastating for the whole family. Research has been done concerning the impact of childhood cancer on parents and siblings, but little is known about the impact of a childhood cancer diagnosis on grandparents. Grandparents play an essential role in caring for their grandchildren and are an important source of support. Studies in grandparents of children suffering from other diseases such as autism or other disabilities, have shown that grandparents are affected in many ways. The proposed study aims to fill the knowledge gap on grandparents with a grandchild suffering from childhood cancer.
The present study aims to determine: 1) how and to what extent are grandparents involved in the care of their grandchildren during and shortly after cancer treatment; 2) the economic costs of the care provided by grandparents; 3) the information needs of grandparents; and 4) the short- and long-term consequences of a childhood cancer diagnosis for grandparents.
We use mixed methods, combining different study designs and qualitative and quantitative approaches. These include: 1) a longitudinal study on the care and short-term consequences in grandparents of childhood cancer patients; 2) a qualitative study on the experiences of grandparents of childhood cancer patients under treatment; and 3) a cross-sectional study on long-term consequences in grandparents of childhood cancer survivors. Participants include grandparents of children diagnosed with cancer, their parents, the children diagnosed with cancer, and their siblings. The families were recruited in collaboration with the participating pediatric oncology clinics.
The current project is the first longitudinal study on grandparents of grandchildren with cancer in Europe and the first to include self-reported information from three generations (children, parents, and grandparents). Furthermore, the results will provide knowledge on informal care supplied by grandparents, estimate the costs, and describe the information needs and acute and long-term consequences in grandparents. Results will support the development of information material and support services tailored to the needs of grandparents with an ill grandchild.
Funding: Swiss National Science Foundation (Grant No: 10001C_182129/1)
Project Leaders: Prof. Dr. Gisela Michel; Prof. Dr. Katrin Scheinemann
Team: Dr. Peter Francis Raguindin; Dr. Anica Ilic; Dr. Katharina Roser; Cristina Priboi, MSc; Pauline Holmer, MSc; Nadja Mühlebach, MSc; (former collaborators: Dr. Daniela Dyntar; Salome Christen, MA)
Duration: April 2019 - September 2024
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).