gms | German Medical Science

Being “an empirical inquiry that investigates a contemporary phenomenon within its real-life context” [1], qualitative case study methodology provides an opportunity to study specific behaviour as a part and a reaction to external circumstances.

In order to explore actual survivorship pathways both from the perspectives of pediatric cancer survivors, their informal caregivers and healthcare providers, involved in follow-up care, we created qualitative case studies describing typical trajectories of survivorship.

We combined personal “survivorship stories” of 36 VersKiK interview participants (paediatric cancer survivors, aged from 12 to 60 years old, and their informal caregivers) with results of 19 observations of follow-up appointments, - paediatric (child with informal caregiver), transition (typically survivor aged 18–25 years old with informal caregiver) and adult (survivors, treated in adult healthcare) conducted at a university hospital in Germany, to create two follow-up pathway case studies. Case studies describe typical organisational complexities experienced by them.

The first case study aims at describing a typical pathway of an adult survivor. We decided to describe a female adult survivor in order to approach the majority of adult-life topics, including fertility issues, as well as to embrace the topic of secondary neoplasms and related regular diagnostic procedures for prevention. In the second case study, we are aiming to address challenges typically experienced by transition, – transfer to the adult healthcare system, – patients. We decided to describe a male transition patient who experienced a brain tumour and completed a typical complex treatment followed by unavoidable late effects.

Novel case study approach, based on combination of different data sources – survivors and/or their informal caregivers narratives from interview added with “snapshot” based on unstructured participant observations – will give us an opportunity to reveal specific needs and preferences of paediatric cancer survivors and their relatives. Addressing them, we will propose adaptations to existing follow-up guidelines, in order to improve survivors’ adherence to them.

We will discuss the case studies in four focus groups with up to eight healthcare professionals involved in follow-up care each. Thus, we aim to explore the actual challenges they are facing as well as the mechanisms currently developed in order to overcome them. Thus, we aiming to suggest practically applicable measures to improve current follow-up provision for paediatric cancer survivors.

Funding: Innovationsfonds/Versorgungsforschung; VSF1_2019-095