Medical assessment of adverse health outcomes in Dutch childhood cancer survivors; a nationwide project; SKION LATER Q2008 study:
long-term psychosocial consequences of childhood cancer

Survivors The diagnosis and treatment of childhood cancer is a dramatic event
that could influence physical and psychosocial functioning long time after
treatment has been terminated. The literature about the long-term psychosocial
consequences of childhood cancer yielded contradictory results. In many studies
overall mean adjustment has been found to be near normal levels. Most survivors
seem to cope well with the cancer experience and positive outcomes, for example
resiliency or posttraumatic growth, were found. The results of other studies,
on the other hand, suggested that survivors suffer more from depressive,
anxiety and posttraumatic stress symptoms than the general population.
Furthermore, a growing body of evidence suggests that more subtle or specific
areas may be adversely affected in long-term survivors. Studies of paediatric
psycho-oncological outcomes consistently identify a group of children and
family members (estimated 25-30%) who do not cope well with the cancer or who
have personal, family and social difficulties. Considering the previous,
research limited to psychopathology or generic HRQoL in survivors is
inadequate. It is of utmost importance to gain clear understanding of
survivor-specific Qol issues such as disease-related worries and positive
outcomes. In addition, research on psychosocial determinants of the
psychosocial consequences of childhood cancer is recommended strongly because
few clear medical risk factors for diminished psychosocial functioning have
been traced until now, with the exception of CNS-tumours, bone-tumours and
radiotherapy. Moreover, identification of psychosocial risk and protective
factors will enable care-providers to provide optimal support to patients and
survivors. Parents and siblings Childhood cancer exerts also considerable
strain on the parents and siblings. More research is needed to gain insight in
the long-term consequences of childhood cancer for parents and siblings.

Aims of SKION LATER Q2008-Psychosocial: 1. Survivors - to assess emotional
functioning, generic and survivor-specific QoL, and executive functioning (< 18
years), and to compare with siblings and norm data; - to assess determinants of
emotional functioning, generic and survivor-specific QoL 2. Siblings - to
assess emotional functioning and generic QoL, and to compare with norm data; -
to assess determinants of emotional functioning and generic QoL. 3. Parents -
to assess emotional functioning, and to compare with norm data; - to assess
determinants of emotional functioning.

The study involves a cross-sectional study of a retrospective nationwide cohort
of 5-year survivors of childhood cancer (diagnosed 1960-2001) in the
Netherlands. We estimate that the total cohort will include 7000 survivors. For
SKION LATER Q2008-Psychosocial parents and siblings will also be approached.
Survivors, their parents and siblings will be asked to complete several
validated questionnaires concerning QoL(generic and survivor-specific),
emotional functioning (incl anxiety, depression, PTSS) and determinantis of QoL
and emotional functioning. (see appendix) Data of the survivors will be
compared with data of siblings and with norm data. Parental data will be
compared with norm data. Data of siblings will be compared with norm data.

The are no risks for the participants. The survivors will be invited for the
Q2008 SKION LATER study close to a visit to the LATER out patient clinic. The
burden depends on on the age of the survivor because this determines the number
of questionnaires to be completed for SKION LATER Q2008-Psychosociaal (see
appendix).