Case study in VersKiK: a methodological approach for studying paediatric cancer survivors' pathways

Advancements in medical treatment have significantly increased the likelihood of survival after childhood and adolescent cancer. However, this expanding group remains vulnerable to various late effects resulting from cancer itself or cancer treatment. It is crucial to implement consistent and systematic follow-up care procedures to promptly identify and address potential complications that may arise later in life.

We conducted 19 unstructured participant observations of follow-up appointments and 36 episodic narrative interviews with paediatric cancer survivors (diagnosed before age 18) and their informal caregivers. We analysed observational field notes and personal narratives on the "survivor pathway" from interview transcripts, applying the inductive narrative method to Yin's approach to case study development. Synthesising frequently discussed topics, we generated case studies to discuss with healthcare professionals and patient representatives in a focus group setting.

We designed two case studies to capture the complexity of follow-up care organisation in paediatric cancer survivorship for further discussion in focus groups with healthcare professionals. One case study describes a typical 'survivor pathway' of an adult survivor of paediatric cancer, and another describes a survivor currently transitioning from paediatric to adult healthcare facilities.

Our objective is to examine real-life survivorship scenarios with the overall aim of suggesting improvements to the current structure of paediatric cancer follow-up care in the framework of a larger VersKiK-Study. We used both case studies as a basis for discussion in four focus groups (ca. 8 participants each) with healthcare providers involved in paediatric cancer follow-up and patient advocates.