Childhood leukemia and non-Hodgkin lymphoma survivors lack of knowledge
about their past disease and possible late effects. I-BFM ELTEC study
with Chilean and Croatian participation
Abstract
Background: Late effects in childhood cancer survivors are a major cause
of morbidity and mortality. The objective was to establish knowledge
about the disease, late effects, self-care practices, application of
health knowledge/education, sources of information, and biopsychosocial
impact of cancer, and compare the results of Chile and Croatia.
Procedure: one hundred and seventy-one, five-year survivors who were
treated for leukemia or non-Hodgkins lymphoma responded to a
questionnaire (119 in Chile and 52 in Croatia). The instrument was
reviewed by BFM- ELTEC. Results: health knowledge about past diagnosis
and general treatment had 96% Chilean and 85% Croatian survivors.
Ninety percent of Chilean and 73% of Croatian survivors were unaware of
possible late effects, and half did not know which specialist to visit
for follow-up. Forty-six percent of Chilean and 35% of Croatian
survivors knew about healthy lifestyles, but most did not practice them.
Health education was received during the treatment in 74% Chilean and
87% Croatian survivors. About 50% survivors in both groups had
experienced fear or anguish, but it was also considered an experience to
grow for 60% of Chilean and 42% Croatian survivors. Eighty-seven
percent Chilean and 77% Croatian survivors considered themselves
physically independent, while 76% and 75% felt psychologically
independent, respectively. Conclusion: It was detected a significant
lack of knowledge about the specific treatment, late effects, and future
health in both countries. They did not achieve significant learning with
the education received. Psychological sequelae were found that are
important to prevent.