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CHAPTER 1
INTRODUCTION AND OVERVIEW
It is as if we have invented sophisticated techniques to save people
from drowning, but once they have been pulled from the water, we leave
them to cough and splutter on their own in the belief we have done all
we can. Fitzhugh Mullan, MD & cancer survivor, 1985 (as cited in
Richardson, Nelson, & Meeske, 1999, p136).
1.1 Background
Care of cancer survivors has come a long way since that quote was written. The
survival rates for children and young people who have had a childhood cancer have
risen dramatically in the past 20 - 30 years with current estimates of an overall 5 year
survival rate of greater than 80%. This is an impressive statistic when compared with
adult cancer survival rates of 66% (Ries et al., 2007). The majority of children with
cancer can now expect to survive for many years after diagnosis.
Increased survival rates have been brought about by a combination of advances
in treatment, improved supportive therapies and collaborative multi-centred clinical
trials (Hewitt, Weiner, & Simone, 2003). It is now estimated that in developed countries
about 1 in every 1,000 adults reaching the age of 20 will be a long term survivor of
cancer (Last, Grootenhuis, & Eiser, 2005). In New Zealand each year approx 160
children 15 years of age or younger are diagnosed with a childhood malignancy,
therefore with an estimated 80% or greater survival, every decade will see an additional
1200 survivors within our population. However, cure has come at a cost, as cancer
survivors are at risk for physical or psychosocial late effects from their disease,
chemotherapy, radiation therapy and surgery (Hudson et al., 2003; Richardson et al.,
1999). The U.S. Child Cancer Survivorship Study Group (CCSS) is one of the largest
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