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language skills equivalent to year 6 (10 years of age) the same criteria as that set for the
Youth2000 and Youth’07 surveys. In addition, participants needed to be able to
physically use a computer as well as understand instructions to competently interface
with the computer and questionnaire. Those who met the criteria but had not been the
recipient of medical surveillance for their cancer within the past 4 years were excluded,
because it couldn’t be determined if the young person was aware of having had a cancer
diagnosis and it would be unethical to approach them. An example of this would be a
child diagnosed at a young age with a pilocytic astrocytoma that is classified as a cancer
but is frequently successfully treated with surgery only and is often not referred to as
cancer. In those cases where eligibility criterion was unclear due to cognitive ability
and/ or physical impairment, recommendation for inclusion was sought from the
primary oncologist and/or clinical psychologist attached to the prospective participant’s
oncology service.
Participants were recruited from the New Zealand Child Cancer Registry
(NZCCR). The NZCCR was established in 2000 to provide a complete database of all
children diagnosed with cancer. Funding for the setting up and maintenance of the
registry is provided through the National Paediatric Oncology Steering Group (POSG).
In using the NZCCR to identify participants it was recognised that while
retrospective data had been included on cancer diagnoses prior to 2000 it was
incomplete. Additional sources of recruitment were used, namely the Paediatric
Haematology/Oncology service databases at both tertiary centres (Auckland and
Christchurch). Advertisements were also taken out in the family publications of the two
charitable organisations that support young people with cancer, namely the Child
Cancer Foundation (CCF) and CanTeen NZ. A data file was established by identifying
all childhood cancer survivors who met the selection criteria (Table 1).
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