Therapeutic advances in paediatric oncology have led to increase the number of childhood cancers survivors (CCSs). Emerging evidence shows that CCSs experience long-term morbidity due to their cancer therapy. Spain-CCSS (Spanish Childhood Cancer Survivors Study) aims to set up a CCS cohort in Spain.
CCSs treated between 1980 and 2009 in the paediatric hemato-oncology department of
Hospital Sant Joan de Deu in Barcelona were invited to participate in the study and to
complete a health status questionnaire (HSQ). Recruitment, disease validation and retrospective record collection are still ongoing.
Over 1568 individuals contacted 536 (34%) accepted to participate, 83 (5%) were not alive at the time of the questionnaire, 480 (30%) could not be traced and 140 (6%) refused to participate. We are still waiting a response from 340 (30%) subjects.
Among participants 285 (53 %) are male. Participants median age is 22 years (range 6-50). The median follow up is 13 years (range 5-35). Information collected through the HSQ includes: socio-economic status, quality of life health related outcomes.
Though more effort is needed to increase participation rate, this cohort is an important
source of information on different health outcomes among CCSs.