Surveys and Questionnaires Clinical Trial
Official title:
The Value of Follow-Up After Childhood Acute Lymphoblastic Leukaemia in Denmark - Family Perspectives
The aim of the study is to evaluate the family perspective on follow-up programs after treatment for childhood acute lymphoblastic leukaemia. It is relevant when new follow-up programs are to be designed.
More than 90 % of paediatric patients with acute lymphoblastic leukaemia (ALL), treated on
the Nordic Society of Pediatric Hematology and Oncology (NOPHO) ALL-2008 protocol, are alive
five years after diagnosis. The main reason for treatment failure being relapse.
The risk of relapse after treatment for ALL is highest within the first two years after
cessation of maintenance therapy. Therefore, it has been routine in most countries to
follow-up patients in the outpatient clinic every one or two months during the first years
after end of therapy for ALL in order to detect recurrence and possible late sequelae at an
early stage.
In children with ALL there are only a few studies on the value of routine follow-up,
including haematological status after cessation of maintenance therapy. These studies showed
that approximately 90% of the relapses were diagnosed in children with symptoms of leukaemia
progression and that routine blood tests and clinical follow-ups were of little value. It is
well known that there are other issues besides the risk of relapse, which are relevant for
families after cessation of ALL therapy i.e. risk of late effects of treatment, psychosocial
problems related to the child's return to "normal" life etc. These issues will also have an
impact upon how the follow-up programs are planned. The investigators will study the family
perspectives on follow-up during the first 5-years after cessation of maintenance therapy in
a Danish cohort of children treated according to the NOPHO ALL-2008 protocol.
The investigators will conduct a cross-sectional study. Outcomes are patient-reported as the
measurement instrument used is questionnaires. Eligible families are families with children
diagnosed with acute lymphoblastic leukaemia in Denmark and being in the period 0-5 years
after cessation of maintenance therapy.
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