title: Childhood leukaemia survivors' experiences of long-term follow-ups in an endocrine clinic - A focus-group study.
abstract: The survival rate after childhood cancer has improved markedly and today more than 80% of patients will survive. Many childhood cancer survivors suffer from late complications due to radiotherapy and chemotherapy. Survivors of Acute Lymphoblastic Leukaemia (ALL), treated with cranial radiotherapy, are at a particularly high risk of having endocrine complications.
  
  
  OBJECTIVE
  To illuminate childhood ALL survivors' experiences of a long-term follow-up in an endocrine clinic.
  
  
  METHODS
  Data collection carried out using semi-structured focus-group interviews. Fifteen ALL survivors were included in the study, divided into 4 groups. Data was analysed with conventional qualitative content analysis.
  
  
  RESULTS
  The survivors' experiences were captured in the theme: "The need for understanding and support in order to manage daily life". An understanding of their situation, as well as support for managing daily life was fundamental. Lack of understanding and support from the community was connected with a fear for the future. The follow-up at the endocrine clinic was shown to be crucial for increasing the survivors' understanding of late complications. The past feeling of being out of control was replaced with an increased self-confidence.
  
  
  CONCLUSIONS
  Many leukaemia survivors experienced their daily lives as a struggle and as a complicated issue to cope with. The theme "understanding and support to manage daily life" mirrors how the survivors are in need of knowledge and support in order to handle and understand their complex situation after surviving leukaemia. Offering understanding and support with a holistic approach, may be a way in which to strengthen the survivors' health.
authors.affiliation: Department of Endocrinology, Skåne University Hospital, Institution of Clinical Sciences, Lund, Sweden.
authors.forename: Anna
authors.initials: A
authors.lastname: Pålsson
authors.affiliation: Department of Surgery, Skåne University Hospital, Institution of Clinical Sciences, Lund, Sweden.
authors.forename: Marlene
authors.initials: M
authors.lastname: Malmström
authors.affiliation: Department of Endocrinology, Skåne University Hospital, Institution of Clinical Sciences, Lund, Sweden. Electronic address: cecilia.follin@med.lu.se.
authors.forename: Cecilia
authors.initials: C
authors.lastname: Follin
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology*; D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D004700:Endocrine System Diseases / Q000209:etiology* / Q000523:psychology; D005260:Female; D017144:Focus Groups; D005500:Follow-Up Studies; D006801:Humans; D007223:Infant; D008137:Longitudinal Studies; D008297:Male; D054198:Precursor Cell Lymphoblastic Leukemia-Lymphoma / Q000150:complications* / Q000523:psychology / Q000532:radiotherapy*; D017741:Survivors / Q000523:psychology*; D013548:Sweden; D055815:Young Adult
keywords: Childhood acute lymphoblastic leukaemia; Endocrine clinic; Focus group; Late complications; Long-term follow-up