Research Projects

Long Term Quality of Life (SCCSS-HRQOL)

Cancers and their treatments can affect survivors’ health and quality of life. The overall goal of today’s treatment regimens is to ensure that survivors not only survive but also enjoy a quality of life similar to their peers. We still do not know how quality of life changes as survivors age, their life circumstances change, and health problems become more common.

The Quality-of-Life Study (SCCSS-HRQOL) will find out how survivors’ quality of life changes over time and why. The Swiss Childhood Cancer Survivor Study began in 2007 to send questionnaires to survivors of childhood cancer who live in Switzerland. The questionnaires contain questions on quality of life and other important aspects of life such as education and sports. We will compare quality of life between the first questionnaire a survivor has answered and subsequent questionnaires. We will also examine what is different between survivors whose quality of life has improved, remained stable, or deteriorated.

Health Behaviors after Childhood Cancer

Maintaining a healthy lifestyle, such as being physically active and eating healthily, is important for everyone. It helps reduce the risk of serious illness and improves quality of life. In contrast, unhealthy behaviors like smoking or drinking alcohol can have opposite effects. In the SCCSS Health Behavior Study we aim to better understand health behaviors of childhood cancer survivors. We examine factors like age, sex, or type of cancer that may influence lifestyle choices. Because health behaviors usually form in early life, we focus on young survivors aged 5 to 29 years. Our goal is to identify groups of survivors who might benefit from additional support to maintain a healthy lifestyle and improve their long-term health and quality of life.

This project is funded by Swiss Cancer Research (KFS-6346-02-2025) and led by Prof. Claudia Kuehni, MD.

For more information, please contact Anna Scarpellini, MD (anna.scarpellinipancrazi@unibe.ch) or Oliver Schulz, MSc (oliver.schulz@unibe.ch). 

Growth Late Effects after Childhood Cancer (Growth Study)

During and after childhood cancer treatment, children often face problems such as weight loss, excessive weight gain, slowed growth, or shorter adult height. Later in life, poor nutritional status can lower quality of life and raise the risk of diseases such as diabetes and heart problems.

In this study we aim to understand how children’s weight and height change during and after cancer treatment. We aim to identify which cancer types, treatments, and time periods may put children at higher risk for abnormal weight and height. This will support monitoring and timely intervention.

We will collect and analyse height and weight measurements from hospitals and registries in Switzerland, Portugal, and Slovenia. In addition, we will develop international guidelines as part of the International Guidelines Harmonization Group (IGHG) that can help healthcare providers monitor and manage weight in childhood cancer survivors.

Sun Protection and Skin Cancer Screening after Childhood Cancer (SunCare Study)

Survivors of childhood cancer need to take special care of their skin. Treatments such as radiation, chemotherapy, or stem cell transplantation can make the skin more sensitive and increase the risk of developing skin cancer later in life.

In the SunCare Study, we ask survivors about their sun protection habits, sunburn experiences, and whether they have regular skin examinations with a physician. By identifying areas where skin care could be improved, we aim to raise awareness and strengthen prevention strategies. The long-term goal is to reduce the risk of skin cancer and support the lifelong health of childhood cancer survivors.

This project is funded by the Stiftung für krebskranke Kinder, Regio Basiliensis and led by Carina Nigg, PhD, Christina Schindera, MD, PhD, and Prof. Claudia Kuehni, MD.

Physical activity after Childhood Cancer
(SCCSS Activity)

Children who have undergone cancer treatment are real fighters! Their health remains an important topic also after therapy has been completed. To stay healthy after childhood cancer, sufficient physical activity is crucial: It improves both physical and mental health.

With the SCCSS-Activity study, we aim to better understand physical activity after childhood cancer. We assess physical activity using a small movement sensor (accelerometer) that childhood cancer survivors wear continuously on their thigh for one week – at school or work, while eating, showering, watching movies, cycling, or playing soccer. Participants receive the sensor conveniently by mail.

Using the accelerometer data, we can find out how much time childhood cancer survivors spend in physical activity. We can also find out how much time they spend sitting, standing, and sleeping. Our goal is to identify which individuals could particularly benefit from tailored physical activity programs to improve their health and quality of life.

Pulmonary Late Effects after Childhood Cancer
(Pulmo Study)

Cancer treatments can lead to lung problems both during and after the therapy. These lung problems often go unnoticed because the lungs can compensate for limitations for a long time. Special lung function tests are harmless and painless examinations and can detect initial lung changes that may be harmful early.

In the SCCSS-FollowUp study, we analyze lung function tests routinely performed in the clinical follow-up care of children and adolescents who survived cancer. The study started in 2022 at the University Hospital in Bern and has since been expanded to University Hospitals in Basel and Geneva. We aim to identify patients prone to developing lung diseases and determine the potential risk factors. By doing so, we hope to improve care provided to former pediatric cancer patients, ultimately improving their long-term quality of life.

Cardiovascular Late Effects after Childhood Cancer (CardioOnco Study)

The CardioOnco Study aims to detect heart problems early and to investigate possible risk factors. It uses regular heart ultrasound and also a novel technique, called speckle tracking ultrasound. Speckle tracking has been shown to detect heart problems earlier in adult cancer patients compared to regular heart ultrasound.

This study is conducted as part of regular clinical care in the outpatient clinics of participating centres. It started in 2017 at the University Hospital in Bern and since 2021 has been expanded to additional clinical centres across Switzerland. We hope that we will contribute to earlier detection of heart disease in the future, e.g., by implementing the speckle tracking technique into clinical care, and prevent more severe heart problems, such as heart failure or heart attack in childhood cancer survivors.

Genetic Risks for Childhood Cancer Complications Switzerland (GECCOS)

The GECCOS study uses genetic samples from former patients to investigate whether certain people have a higher risk of late effects than others. The findings will help to change the treatment of particularly susceptible patients or to adapt follow-up care.

The GECCOS study is a collaboration of the Universities of Bern and Geneva as well as the Children’s Hospitals of Bern and Geneva. It is funded by the CANSEARCH Foundation, Geneva. Prof Marc Ansari, MD leads this project.

For more information, please contact Nicolas Waespe, PhD (nicolas.waespe@unibe.ch).

The HEAR Study

Hearing loss can impact the education, social life, and overall well-being of childhood cancer survivors. This issue can arise during cancer treatment or many years later. Because of this, regular hearing tests are recommended for individuals who had treatments that might affect their hearing.

Our project introduced an easy and low-threshold method for former patients to get their hearing tested, meaning hearing tests at local hearing aid shops. We used surveys, interviews, and group discussions with all stakeholders (survivors, hearing aid shop employees and physicians), to find out how feasible this approach could be to supplement existing follow-up care programs.

The low-threshold approach is supposed to be cost-efficient and should entail a minimal burden to former patients. Its aim is to further improvements in cancer treatment, long-term follow-up care and quality of life of childhood cancer survivors.

Dietary intake, overweight, and chronic health problems after childhood cancer

Study results

Fabiën Belle-van Sprundel, PhD has published following papers with results from this project:

Nutrients, 2021: Dietary Intake and Diet Quality of Adult Survivors of Childhood Cancer and the General Population: Results from the SCCSS-Nutrition Study
Find the lay summary of this study written in accessible language here.

JMIR Research Protocols, 2019: Nutritional Assessment of Childhood Cancer Survivors (the Swiss Childhood Cancer Survivor Study-Nutrition): Protocol for a Multicenter Observational Study

Nutrients, 2019: Sodium and Potassium Intakes and Cardiovascular Risk Profiles in Childhood Cancer Survivors: The SCCSS-Nutrition Study