This project aimed to describe how the COVID-19 pandemic has changed our lives.

In spring 2020 (during the first wave of the COVID-19 pandemic), 1757 people from the Swiss population completed an 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. Hence, we can compare the situation during the first wave of the COVID-19 pandemic to the situation preceding the pandemic. With this study, we are able to show the impact the COVID-19 pandemic has had on the Swiss population. The results help describing the burden of the Swiss population and identifying 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 Bänziger; Dr. Anica Ilic; Dr. Luzius Mader (University of Bern)
Duration: March 2020 – April 2021

In the past decades, childhood cancer survival has improved reaching an overall 5-year survival of approximately 80%, resulting in a rapidly growing population of long-term survivors. However, more than 60% of survivors develop physical and psychological late effects due to cancer and its treatment. Several studies suggested that 20-30% of survivors report moderate to severe psychological distress, fatigue, or neurocognitive impairments. Therefore, it is essential 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 led to different recommendations and uncertainty among clinicians about which guidelines to use or implement in their country.

In collaboration with the International Guidelines Harmonization Group for Late Effects of Childhood Cancer (IGHG; www.ighg.org), we developed 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 Prof. Jordan Gilleland Marchak (Emory University, Atlanta, USA), an international group of experts evaluated concordances and discordances among recommendations of existing guidelines and, in case of discordances, systematically reviewed all relevant literature on the stated topic. First, we formulated relevant clinical questions using the PICO model (Participants, Interventions, Control group, and Outcome). A systematic literature search was performed with the support of the Cochrane Childhood Cancer Group, which aimed to identify all available evidence. Two reviewers systematically reviewed all potential evidence. Finally, we will summarize the identified evidence and formulated specific recommendations.

 

Our study helped developing guidelines for the systematic surveillance of various psychological issues, mental health, and fatigue to address the needs of childhood cancer survivors and cancer survivors in general. The close international collaboration among researchers and clinicians helps ensure that guidelines can be implemented adequately and efficiently in practice.

Funding: Krebsliga Zentralschweiz

Project Leaders: Prof. Dr. Gisela Michel; Jordan Gilleland Marchak, PhD

Team in Luzern: Salome Christen, MA; Dr. Katharina Roser; Dr. Erika Harju; Dr. Anica Ilic

Duration: January 2016 - December 2021

When a child is diagnosed with cancer, parents are confronted with the potential fatality of the disease. They experience a highly stressful time, which may affect their psychological well-being, their relationship as a couple and with their children. Additionally, because of prolonged absence from work, they may experience an economic burden. However, for many parents distress is not over with the end of treatment and cure of the child. Parents may suffer from a variety of psychological problems such as depression, anxiety or post-traumatic stress symptoms. Uncertainty about the child’s health and worries about relapse or late effects may negatively affect parents individually or as a couple. So far, late outcomes of childhood cancer in parents have mostly been studied in small samples and within a short time frame after the end of treatment.

We aim to 1) describe psychological and socio-demographic outcomes, as well as needs in parents of long-term childhood cancer survivors and compare them with parents of the general population, 2) evaluate associations of these outcomes with the clinical characteristics of the child’s disease and the child’s own late outcomes and 3) provide Swiss norm-data for three established and frequently used instruments on quality of life, psychological distress and post-traumatic stress.

The Swiss Childhood Cancer Registry (SCCR) registers all children diagnosed with cancer in Switzerland. We include all parents whose children were diagnosed with cancer under age 16 years, who were Swiss residents at diagnosis, who survived for 5 years or more, and are currently alive and aged 20 years or older. Additionally, we selected a random sample of parents of the same age group. Parents of survivors are first contacted by paediatric oncologists of the original treating clinic. All parents receive a questionnaire package from the study centre. Clinical information on the cancer and treatment are available from the SCCR, and information about survivors’ health from the Swiss Childhood Cancer Survivor Study.

Several large cohort studies among childhood cancer survivors have improved our knowledge on their late outcomes and well-being. However, while most survivors get on with their life after cancer, many parents remain affected by their experience long after their child reached adulthood. The proposed study will be the first population-based study among parents of long-term survivors of childhood cancer and will shed light on their psychological well-being, social outcomes and the needs they have for their children and themselves.

Funding: Swiss National Science Foundation (Grant No: (Projekt Nr. 100019_153268), Kinderkrebshilfe Schweiz
Project leader: Prof. Dr. Gisela Michel
Team: Dr. Katharina Roser, Luzius Mader, Salome Christen, Julia Bänziger and Janine Vetsch.
Duration: August 2014 – December 2017

Treatment for cancer in children and young adults has greatly improved and most patients are being cured. The disease and the intensive treatment, however, make them susceptible to late effects. More than 50% of survivors of childhood cancer suffer from late effects and many die from these. In addition, a substantial number of survivors suffer from psychological problems such as depression, anxiety, or post-traumatic stress. To detect and treat late effects as early as possible it is important that survivors continue to visit follow-up care long after they have been cured from cancer. Various models of follow-up care have been described but so far none has been officially implemented in Switzerland. While follow-up care needs to be constantly updated according to the current status of research, it is also important that it is convenient for survivors to participate.

The aims of the project are: 1) to compare advantages and disadvantages of follow-up care models in Europe; 2) to determine what follow-up care is used in Switzerland; and 3) to determine the advantages and disadvantages of follow-up care models as perceived by survivors, oncologists and family practitioners, and to compare their views and opinions.

The research program consists of 3 projects. In Project 1 a questionnaire was sent to follow-up programs in Europe. In project 2, current use of follow-up care and psychological well-being has been determined in childhood cancer survivors. We used data from the Swiss Childhood Cancer Survivor Study for this project. For Project 3 a questionnaire was sent to young cancer survivors to assess their opinions on currently used and desired optimal follow-up care. The sample included childhood and young adult cancer survivors diagnosed between 1990 and 2007 aged under 25 years, who have survived for more than 5 years and who were aged 11 years and older at the time of study. In survivors aged 11-18 years at time of study parents completed the questionnaire. In addition oncologists/haematologists, and family practitioners received a questionnaire.

Although various models for the organisation of follow-up care have been suggested, none has been systematically implemented in Switzerland. The proposed project provides an overview of follow-up care models used in Europe and describes the preferences for follow-up care models in survivors, oncologists and family practitioners in Switzerland. The project provides the basis for the development of a standardised model of follow-up care for childhood cancer survivors in Switzerland in close collaboration with the Swiss Paediatric Oncology Group.

Funding: Swiss National Science Foundation (Ambizione Grant to Gisela Michel: No. PZ00P3_121682 / 1 and PZ00P3_141722 / 1)
Project leader: Gisela Michel
Duration: August 2009 – July 2014

Childhood cancer survivors are at high risk for psychosocial problems in adult life in terms of educational achievement or employment, the formation of intimate relationships, and psychological distress. However, survivors’ needs and preferences for psychosocial care outside the clinical context remain largely unknown.

Our project aims to 1) identify psychosocial problems that childhood cancer survivors encountered after being diagnosed and treated for their cancer, 2) evaluate how survivors coped with such problems and where they found help and support, and 3) assess survivors’ needs and preferences for future psychosocial care.

We will use a mixed methods approach, including quantitative questionnaires and qualitative interviews, to address the aims of our project. First, we will inform eligible survivors about the study and send them a link to an online questionnaire. The questionnaire will assess psychological distress, health-related quality of life, and survivors’ needs for psychosocial care. A subsample of survivors who completed the questionnaire will be invited for personal interviews addressing their lived experience and subjective needs and preferences for psychosocial care in more detail.

This project is a first step towards the development of psychosocial care services for survivors of childhood cancer and will inform health care providers and policy makers on survivors’ needs and preferences for psychosocial care along the cancer-survivorship trajectory.

Funding: Krebsforschung Schweiz (Nr. HSR-4080-11-2016)
Project Leader: Prof. Dr. Gisela Michel
Team: Dr. Manya Hendriks
Duration: November 2017 – Oktober 2019

With survival rates of 80% the population of childhood cancer survivors is rapidly growing. However, more than 60% of survivors report late effects, and in Switzerland around 25% of adult survivors report psychological distress at a clinical level. For these reasons, most childhood cancer survivors are advised to attend life-long follow-up aiming at screening for late complications. While screening for medical problems has been well-established, systematic psychological screening is not yet available. Several tools have been developed to be used with adult cancer patients on treatment, but their utility for the expanding population of cancer survivors has not been shown.

The present study aims to 1) test a screening tool for psychological distress in adolescent and adult childhood cancer survivors, 2) understand the emotional status of survivors and their parents before and after a follow-up visit, and 3) investigate the acceptability, arduousness, simplicity and perceived necessity of a screening instrument and the attitudes towards mental healthcare.

The sample will include childhood cancer survivors attending a follow up appointment in the paediatric oncology clinic of the University Children’s Hospital in Basel (UKBB) within a 1.5 year period (expected N=90) and their parents. Eligibility criteria for the present study are: age ≥15 years at the time of study, diagnosis of childhood cancer at age ≤18 years, off treatment ≥1 year. Survivors and their parents will receive an information letter and, one week before their follow-up appointment, a questionnaire including the screening tool (Emotion Thermometer) and questions on its acceptability. Additionally, the questionnaire will assess information on psychological distress (including SCL-90-R for validation of the screening tool, Post-Traumatic Stress Disorder Checklist – civilian version (PCL-C)), and socio-demographic information. After the appointment survivors will receive a second shorter questionnaire assessing psychological distress. Clinic staff’s opinion about the screening tool will be assessed in an online questionnaire.

The present study is the first step toward the implementation of systematic psychological screening during follow-up appointments. We will test a potential screening tool, and at the same time assess how survivors and clinic staff perceive psychological screening. Assessing psychological distress before and after the follow-up appointment will help evaluating the influence of the appointment itself on distress experienced around the appointment and additionally, how parents might influence distress. Close collaboration with clinicians in the Swiss Paediatric Oncology Group (SPOG) will allow implementing systematic screening for psychological distress in the daily follow-up routine in all nine paediatric oncology centres in Switzerland. Ultimately, screening will help patients and survivors to detect psychological distress early and provide timely professional counselling to those in need.

Funding: Cancer Research Switzerland (Projekt Nr. KSF-3955-08-2016)
Project Leader: Prof. Dr. Gisela Michel, Prof. Dr. Katrin Scheinemann (Universitätskinderklinik beider Basel)
Team: Erika Harju
Duration: Mai 2017 – April 2020