In recent years the necessity of measuring quality of life in childhood cancer survivors has been stressed. This paper gives an overview of the results of studies into the quality of life (QL) of young adult survivors of childhood cancer and suggest areas for future research. The review located 30 empirical studies published up to 2001. The results are described in terms of the following QL dimensions: physical functioning (QL, general health), psychological functioning (overall emotional functioning, depression and anxiety, self-esteem), social functioning (education, employment, insurance, living situation, marital status and family), and sexual functioning. Factors related to survivors' QL are reported: demographics and illness- and treatment related variables. Although the literature yields some inconsistent findings, a number of clear trends can be identified: (a) most survivors reported being in good health, with the exception of some bone tumour survivors; (b) most survivors function well psychologically; (c) survivors of CNS tumours and survivors of acute lymphoblastic leukaemia (ALL) are at risk for educational deficits; (d) job discrimination, difficulties in obtaining work and problems in obtaining health and life insurance were reported; (e) survivors have lower rates of marriage and parenthood; (f) survivors worry about their reproductive capacity and/or about future health problems their children might experience as a result of their cancer history. There is a need for methodological studies that measure QL among survivors of childhood cancer more precisely by taking into account the effects of the severity of the cancer and the long-term impact of different treatments. Additional data are needed to help us understand the needs of survivors and to identify those subgroups of survivors who are at greatest risk for the adverse sequelae of the disease and its treatment.
The developmental consequences in adulthood of growing up with childhood cancer are not well understood. The Course of life questionnaire was developed to assess the attainment of developmental milestones retrospectively and socio-demographic outcomes in young adulthood. The aim of this study was to assess the course of life and socio-demographic outcomes in young adult survivors of childhood cancer. Knowledge about possible gaps in the course of life could enable health care providers to aim for the most favourable course of life. A total of 353 Dutch survivors and a comparison group of 508 peers without a history of cancer, all aged between 18 and 30, filled in the Course of life questionnaire. The course of life of the survivors was found to be hampered. The young adult survivors of childhood cancer in the Netherlands turned out to have achieved fewer milestones than their peers with respect to autonomy development, social development, and psycho-sexual development, or to have achieved the milestones when they were older than their peers. In addition, survivors displayed less risk behaviour than the comparison group. The survivors and the comparison group also differed on some socio-demographic issues. A considerably lower percentage of survivors than peers in the comparison group were married or living together, and/or employed. Their educational level, on the other hand, was as high as that of their peers.
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