gms | German Medical Science

Background: International research has recently shown that survivors after cancer in childhood and adolescence as well as their informal caregivers often suffer from a lack of tailored information about future health concerns, discrepancies in follow-up care organization, and limited capacities for follow-up care and psychosocial support. This may probably result in lower adherence to follow-up recommendations and guidelines.

Objective: We are aiming to explore actual follow-up needs of survivors and their informal caregivers, limitations of current follow-up care provision, and trajectories of cancer survivors’ transition from paediatric to adult healthcare from survivors’ perspective. This study is a part of an overarching German VersKiK project on survivorship after cancer in childhood and adolescence.

Methods: We developed three episodic narrative interview guides (adolescent and adult survivors, informal caregivers) based on Theory of Planed Behaviour (TPB) and Stereotype Priming model [1], [2]. We conducted 36 interviews with survivors and their informal caregivers, and evaluated the results both qualitative (content analyses) and quantitative (regression model on TPB dimensions). Additionally, we observed 19 follow-up appointments. Based on “personal survivorship stories”, gained as narratives from interviews, and observation field notes, we created two case studies, describing survivorship pathways of an adult survivor and of a survivor in the usually critical phase of transition from childhood to adult care. We used case studies as a basis for discussion during four focus groups with 6-8 healthcare professionals each involved in follow-up care and representatives of self-help groups.

Results: We defined a number of problem areas in follow-up care provision: availability and timeliness of information on follow-up, difficulties of follow-up self-management, heterogeneity of current follow-up care provision, dealing with late effects and psychosocial issues. Accordingly, we will outline possible improvements to current follow-up car organization. Detailed study results will be available in summer 2024, giving a possibility to evaluate follow-up care considering perspectives from survivors, their informal caregivers as well as healthcare providers.

Implication for research and/or (healthcare) practice: The combination of different methods allowed us to get an in-depth understanding of the current state of follow-up care after cancer in childhood and adolescence in Germany, with special insights into transition phase from childhood to adult healthcare system, and to suggest organisational recommendations for care improvement.

Funding: Innovationsfonds/Versorgungsforschung; Project name: Versorgung, Versorgungsbedarf und Versorgungsbedürfnisse von Personen nach einer Krebserkrankung im Kindes- oder Jugendalter (VersKiK); Grant number: VSF1_2019-095