Folgeerkrankungen und Lebensqualität bei Patienten mit onkologischen Erkrankungen im Kindesalter

Evaluationsforschung zur interdisziplinären Langzeit-Nachsorgesprechstunde im Kantonsspital Baselland und ab 2019 im Inselspital Bern

Childhood cancer treatment is now so successful that over 80% of children diagnosed survive into adulthood, resulting in over 6,000 adult survivors in Switzerland. However, many adult childhood cancer survivors (ACCS) face late effects impacting various organ depending on the oncological treatment they received. Most Swiss ACCS are uninformed about their health risks and lack proper follow-up care.

We established two late effects clinics in Liestal (spring 2017) and Bern (autumn 2019), where ACCS receive follow-up care per the Children's Oncology Group guidelines. Led by internists collaborating with pediatric oncologists, these clinics allow ACCS to complete necessary follow-up exams in a single consultation day and offer annual visits. To gather data on ACCS health, feedback, and quality of life, we started a prospective cohort study in 2017.

Our study aims to describe ACCS health and adapt follow-up care to their needs, hoping to show over time that optimized follow-up can mitigate late effects. We use data from questionnaires and clinical visits to collect information on general health, demographic details, quality of life, psychological health, and follow-up visit feedback. Detailed summaries of the oncological treatments ACCS received are also collected.

Inclusion criteria include all ACCS diagnosed before age 20 and currently aged 18 or above who consent to participate.

Implications for Clinical Care:

We were the first Swiss clinics to use an internist-led follow-up model. Our research has shown positive feedback from ACCS and identified diverse health problems at a young age. We aim to improve follow-up care across Switzerland by encouraging other hospitals to adopt similar models. So far, Luzern has adopted our model, and Baden is starting a similar clinic for young adult cancer survivors."