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

Transition from paediatric to adult care is a crucial step in many chronic diseases of childhood, where patients reach adult age. In paediatric oncology there has been a huge improvement in treatment during the past decades, such that now about 80% of patients survive and reach adult age. However, around 60% of survivors suffer from adverse somatic or psychosocial late effects from their treatment and the original disease, and long-term follow-up is necessary for most of them. Generally, follow-up is well organised for survivors during the first 5-10 years, as long as they are in paediatric care and often within the context of clinical trial follow-up. However, successful transition to adult care often fails and survivors are either lost or might continue follow-up in paediatric care despite their adult age and changing needs.

We aimed to determine: 1) the frequency of follow-up in childhood cancer survivors when they are in paediatric, transition and adult care, 2) the health care providers who are involved in follow-up, 3) the information provided to survivors and potential new health care providers, 4) factors associated with different kinds of follow-up and with a successful or problematic transition to adult care, and 5) late outcomes (survival, late effects) associated with different forms of paediatric care and transition.

This is a longitudinal retrospective study using patient records to assess past follow-up care and organisation of transition for childhood cancer survivors while they were still in paediatric care. Additional information on current follow-up received by the same survivors during early adulthood and on socio-economic characteristics is available from two questionnaire studies to the same survivors themselves. Information on exact diagnosis, date of diagnosis, treatment, remissions, and relapses is available from the Swiss Childhood Cancer Registry. Childhood cancer patients who were treated in one of the nine paediatric oncology units in Switzerland, who had survived for at least 5 years and who were aged 16 years or older at the time of the study were included. For all included patients we searched their original patient records at the treating hospital for information on follow-up care, transitional care and transfer to adult care using standardized extraction sheets.

Despite major improvements in treatment of childhood cancer survivors, rapidly rising survival rates and development of guidelines for follow-up care, implementation of follow-up care for childhood cancer survivors has lagged behind. It is currently not clear if childhood cancer survivors who do need regular follow-up actually get what they need. Transition to adult care is an important step where many of those who need care might be lost. Using a combined approach of routine data, information from patient records and questionnaire surveys this study provides the first overview of how follow-up care in Switzerland is implemented for young survivors while in paediatric care, how transition is organised and for which patients transition to adult care has been successful. The available information will help to develop guidelines for the transition process of childhood cancer survivors in Switzerland. In addition, results will provide a basis to improve transitional care in other chronic paediatric diseases.

Funding: Krebsliga Schweiz (Projekt Nr. KLS 02631-08-2010)
Project leader: Prof. Dr. Gisela Michel.
Duration: April 2011 – March 2014

Similar to the general population many former childhood cancer patients have a general desire for having own children. However, many of these survivors worry that their own children might develop cancer or could also have other health problems. These fears can affect the quality of life and family planning. Previous studies have found no increased risk for genetic diseases or cancers. However, most of these studies only included a relatively small number of childhood cancer survivors with own children, and few studies included survivors who had been treated according to recent study protocols. Therefore, we participated in an international multicenter study including 5 countries (Germany [Principal Investigator], Austria, Poland, Czech Republic and Switzerland).
In order to provide better information and education of patients and survivors of childhood cancer we aimed to answer the following questions: 1. Is there a difference in the general health status of offspring of former childhood cancer patients compared to children in the general population? 2. How concerned are former childhood cancer patients regarding their children? 3. How healthy do children of former childhood cancer patients grow up?

In this cross-sectional study we included all former patients registered at the SCCR who were diagnosed with cancer under age 16 years, were Swiss residents at diagnosis, are at least 18 years old at study and have own children. In addition, we invited siblings of participating survivors to complete a questionnaire for their children. The questionnaire was developed in Germany and included questions on the health status of the offspring, and concerns of survivors regarding their children.

The proposed study helps to improve information and education of former, today´s and future patients. Fears can be addressed and reduced if valid and adequate information is available. Where required, preventive measures to improve health impairment in offspring can be taken.

Funding: Kinderkrebshilfe Schweiz.
Project leader (Swiss participation): Prof. Dr. Gisela Michel
Team: Janine Vetsch.
Duration: 2013-2015

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