Clin Pediatr Hematol Oncol.  2007 Apr;14(1):1-42.

Establishment of Korean Childhood Cancer Survivor Cohort and Long-term Follow-up System

• Park HJ
• Nam BH
• Yun YH
• Yang WJ
• Kang HJ
• Shin HY
• Ahn HS

Abstract

PURPOSE: Remarkable improvements in survival of children with cancer has resulted in a growing population of childhood cancer survivors. However, long-term survivors are at risk for developing a broad spectrum of adverse outcomes. Since early 1990's, multi-institutional cohort studies of childhood cancer survivors have been conducted in several developed countries. This study is to establish the basic structure of the Korean Childhood Cancer Survivor Study (KCCSS).
METHODS
We reviewed systematically the current longitudinal studies of childhood cancer survivors and examined all the questionnaires used in the studies. Diverse expert groups provided key elements for developing questionnaires. We chose the area of main sections first and developed the detailed fields of the main sections. Minneapolis-Manchester QOL survey for childhood cancer survivors and by the City of Hope National Medical Center Quality of Life Patient/Cancer Survivor were translated into Korean.
RESULTS
Five main sections of the questionnaires for Korean childhood cancer survivors were developed: Medical treatment summary, Follow-up laboratory results, Check-up of long-term complications, Survey for social functioning, Survey for quality of life (QOL). Survey for quality of life consisted of Korean version of the Minneapolis-Manchester QOL survey for 8~12, 13~20 year-old childhood cancer survivors and the Quality of Life Instrument by the City of Hope National Medical Center for adult childhood cancer survivors.Medical staffs will fill in the data of Medical treatment summary, Follow-up laboratory results, and Check-up of long-term complications. Survey for social functioning and survey for QOL will be filled by childhood cancer survivors or their parents/guardians. The infrastructure of the "Centralized data coordinating center" was established, too.
CONCLUSION
Five main sections of the questionnaires for Korean childhood cancer survivors and an infrastructure of the centralized data coordinating center were developed. This study is the first step of KCCSS.

Keyword

Childhood cancer; Survivors; Long-term complications; Long-term follow-up; Cohort

MeSH Terms

Adult
Child
Cohort Studies*
Developed Countries
Follow-Up Studies*
Hope
Humans
Longitudinal Studies
Quality of Life
Survivors*
Surveys and Questionnaires