Endocrine Abstracts

Background: Survival rate after childhood cancer has improved markedly and today more than 80% of patients with a pediatric malignancy will become 5-year survivor. During the past years it has become evident that many childhood cancer survivors suffer from late complications due to the radiotherapy and chemotherapy. It is established that the largest childhood cancer group, the acute lymphoblastic leukemia (ALL) survivors, exposed to cranial radiotherapy are at particularly high risk of endocrine complications.

Purpose: To illuminate childhood ALL survivors experiences of long-term follow-up in an endocrine clinic.

Method: Data collection was carried out using semi-structured focus-group interviews. Fifteen ALL survivors were included in the study, divided into four groups. Data were analysed with conventional qualitative content analysis.

Results: The survivors experience of the care were captured in the theme: ‘The need of understanding and support to manage daily life’. It was shown that understanding of their situation, as well as support to manage daily life was fundamental for the survivors. On the other hand lack of understanding and support from the society was connected with fear for the future. The follow-up at the endocrine clinic was shown to be crucial for increasing the survivors understanding about late complications after surviving ALL. The past feeling of being out of control was replaced with increased self-confidence among the survivors.

Conclusion: The present results show that the leukemia survivors daily life was experienced as a struggle and a complicated issue to cope with for many survivors. The theme ‘understanding and support to manage daily life’ mirrors how the survivors are in need of knowing and support to handle and understand their complex situation after surviving childhood leukemia. Offering understanding and support with a holistic approach may be a way to strengthen the survivors healthiness, rather than focus on living with complications.