View/Open - Scholarly Commons Home

multi-centred research groups and they have followed a cohort of 14,000 survivors
diagnosed between 1970 and 1986. They concluded that two out of three childhood
cancer survivors are likely to experience at least one chronic health problem and one in
every four survivors is likely to experience a severe late effect as a consequence of their
treatment or malignancy (Mody et al., 2008; Oeffinger & Hudson, 2004; Oeffinger et
al., 2006; Richardson et al., 1999). The diagnosis and subsequent treatment of cancer in
children usually occurs during the formative development years and impacts on normal
growth and development, organ development including cardiovascular, endocrine,
sensory (hearing & vision) and musculoskeletal, as well as neurological and
neurocognitive development. As this is a childhood disease any late effect has the
potential to significantly impact across the adult age-spectrum (Leisenring et al., 2009).
There is a sound body of knowledge around the medical late effects for
childhood cancer survivors based on risk-related exposure to therapies. Evidence-based
guidelines are established for follow-up surveillance. The most comprehensive being: a)
Long Term Follow-up Guidelines for Survivors of Childhood, Adolescent and Young
Adult Cancers, produced by the Children’s Oncology Group (COG) Late Effects
Committee and the Nursing Discipline in 2003, revised 2006 and 2008 (Children's
Oncology Group, 2006), and b) “Practice Statement” issued by the United Kingdom
Children’s Cancer Study Group; Late Effects Group in 1995 and revised in 2005
(United Kingdom Children's Cancer Study Group, 2005). The risk of late effects for
childhood cancer survivors is varied and dependant on the disease, type and intensity of
treatment and individual personal characteristics, with those at greatest risk for
significant cognitive and endocrine late effects being survivors of brain tumours and
central nervous system directed therapies (Richardson et al., 1999; Shaw, 2009).
The psychosocial consequences of living with medical late effects and the
journey through cancer are less well understood. For adolescents, medical and
2