gms | German Medical Science

The majority of paediatric cancer survivors are suffering from late effects resulting in complex health and psychosocial needs. A collaborative care model, including a multi-professional approach to care provision and a stratified disease management, is considered as effective in cancer follow-up. Although it is partially implemented in Germany, only a limited number of paediatric cancer survivors is currently benefiting from collaborative care.

In order to explore non-articulated individual needs and actual experiences of paediatric cancer survivors and their informal caregivers, we conducted unstructured participant observation of follow-up appointments.

Researchers’ field notes from observations were collected at a university hospital in Germany at 19 follow-up appointments involving adolescents, transition patients and adults.

Four main problem areas were identified: follow-up management issues, self-perception changes, reimbursement barriers and participation of informal caregivers in follow-up appointments. Additional topics were frequently discussed on transitional appointments: organisational issues connected to the transfer to the adult healthcare system and psychological challenges connected to it.

Organisational complexities influence follow-up adherence twofold. In some cases, survivors and their informal caregivers feeling themselves “left alone”, while in others – necessity to self-mange follow-up care has led to their empowerment. In order to adhere to follow-up recommendations, an appropriate communication and support from primary care specialists is needed, which, in ideal case, should have specialized knowledge in paediatric cancer follow-up. Additional psychological burden, caused by cancer stigmatisation, negative self-perception, traumatic experience and complications in integration to the society, may add to reduced adherence as well. In this case, informal caregivers’ support may increase adherence to follow-up, while in cases with imbalance in distribution of responsibility or parent-child balance of power, on the contrary – negatively affect readiness to participate in follow-up appointments and even decrease effectiveness of them.

Insights acquired through observation might provide an opportunity to differentiate follow-up pathways and suggest elements of personalised care to paediatric cancer survivors. We will use observation results in a case studies design, which will be discussed in focus groups with healthcare providers, to suggest improvements to the current follow-up care organisation.

Funding: Innovationsfonds/Versorgungsforschung; VSF1_2019-095