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
Duration: January 2020 – December 2022
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. Manya Hendriks, Eddy Carolina Pedraza, MD.
Collaborators: PD Dr. med. Eva Bergsträsser (University Children’s Hospital Zurich); Dr. med. Eva Maria Tinner (University Children’s Hospital Bern)
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:
Cristina Priboi, Research Assistant
E-mail: cristina.priboi Phone: 041 229 59 57 @ 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, Dr. Julia Baenziger, Cristina Priboi, Anica Ilic, Salome Christen
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
In the past decades childhood cancer survival has constantly improved reaching an overall 5-year survival of approximately 80% , resulting in a rapidly growing population of long term survivors. However, as a consequence of cancer and treatment more than 60% of survivors develop physical and/or psychological late effects. Several studies suggested that 20-30% of survivors report moderate to severe psychological distress, fatigue or neurocognitive impairments. 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 cancer (CAYA) have been developed and published. However, the existing guidelines are often inconsistent and some are not up to date anymore. This leads to different recommendations and uncertainty among clinicians about which guidelines to use or implement in their country.
The aim of the proposed study is to develop clinically relevant guidelines on psychological outcomes (psychosocial issues, mental health and fatigue) to be used in follow-up care of CAYA cancer survivors.
Chaired by Prof. Gisela Michel and Jordan Gilleland Marchak (Emory University, Atlanta, USA), a group of experts will evaluate concordances and discordances among recommendations of existing guidelines, and, in case of discordances, systematically review all relevant literature on the stated topic. First, we formulate relevant clinical questions using the PICO model (Participants, Interventions, Control group and Outcome). A systematic literature search will be performed with the support of the Cochrane Childhood Cancer Group, which aims to identify all available evidence. All potential evidence will be systematically reviewed by two reviewers. Finally, we will summarize evidence of these studies, and formulate specific recommendations.
The proposed study will develop guidelines for the systematic surveillance of various psychological issues, mental health and fatigue to specifically address the needs of childhood cancer survivors and of cancer survivors in general. The close international collaboration of researchers and clinicians will help that guidelines can be put into practices adequately and efficiently.
Funding: Krebsliga Zentralschweiz
Project leader: Prof. Dr. Gisela Michel, Jordan Gilleland Marchak PhD
Team in Luzern: Salome Christen, Dr. Katharina Roser
Duration: January 2016 – December 2018
You can also download a pdf file with a description of our current and previous projects (English and German in the same file).