Estimating the quality of life in childhood cancer survivors from parent questionnaires

: Multidisciplinary clinical research on childhood cancer has achieved a marked improvement in survival rate during the last two decades. Due to the increase of long-term survivors, the survey of quality of life (QOL) of cured children is essential. But methods to estimate QOL of children have not been established. We attempted to estimate the QOL of surviving patients from the responses to a questionnaire filled out by their parents. The total number of patients treated at the National Children's Hospital from 1965-1987 was 937, of which 296 patients are still surviving. Among these survivors 108 patients were selected to be surveyed because they were being followed up by our attending physicians. The originally elaborated questionnaire was sent to parents in June 1989. Seventy-eight parents responded. The questionnaire consisted of four major questions. The first was how the QOL of the child compared to that of an ordinary child. The parents circled the appropriate level of QOL determined by our scale (1 lower, 4 the same as ordinary child, 7 excellent). The average score was 5.61 showing that parents felt their child's QOL is superior to an ordinary child. The second question concerned how the present status of the child was influenced by the experience of cancer. Answers were divided into five categories as follows: 1) Good or positive (10%); 2) nothing in particular (49%); minimum (29%); negative (9%); and other (7%). The third question concerned any anxieties. Most parents had numerous anxieties about the relapse, late effects, education, job prospects, marriage and offspring and getting the latest information. The fourth question dealt with what to tell the child as to their true diagnosis. Answers were divided as follows: absolutely no (56%); yes, but in the future (23%); yes, already done (10%); and yes, through our physician; (13%). After studying the questionnaires we interviewed the parents. We noticed that the parent/child relationship was very close. A meeting was conducted with parents and all the staff (doctors, psychologists and nurses). In conclusion, the QOL in surviving childhood cancer patients is considered to be better than that of ordinary children by their parents. This result is likely due to the excellent parent/child relationship.