Young People Living with Cancer: Implications for Policy and Practice

1. Setting the scene

Thankfully cancer is uncommon in young adulthood, as Birch et al (2003) document numbers are low and accounted for only 0.5% of all cancers in 1999 but had risen to 0.6% in 2000 (Birch 2005). Nevertheless, despite its relative rarity, cancer is the most common natural cause of death amongst teenagers and young adults and is exceeded in incidence only by accidental death (Albritton and Bleyer 2003, Birch et al 2003).

Birch et al (2003:2622) report the UK national incidence rates in young people: those aged 12-14 at 10.1, aged 15-19 at 14.4 and aged 20-24 at 22.6 per 100,000 population and according to Albritton and Bleyer (2003) in 15-19 year olds cancer occurs at nearly twice the rate observed in 5-14 year olds. Thus we can see that the incidence of cancer rises during the teenage years and into young adulthood.

Furthermore, there seems to have been a significant increase in young adult cancers over the last 20-30 years. Examining temporal trends in incidence from 1979-2000 in England, Birch (2005:22) shows that while there are differences in the increase of specific cancers, the overall increase during this period has climbed from 15.41 to 19.80 per 100,000 a rise of approximately 30%. Selby et al (2005:271) report the increase from 1975 – 2000 as rising from 16 per 100,000 a year to 24 per 100,000 a year – an increase of 45% over the period. Thomas et al (2006:303) use figures from the Australian Institute of Health and Welfare that show a marked rise. Between 1983 and 2001 the incidence of cancer in 15-30 year olds in Australia rose by over 30% for reasons that Thomas et al acknowledge are not clear.

The Teenage Cancer Trust reports that:

In the last 30 years the incidence of cancer in the teenage and young adult group has increased by 50% and for the first time ever, the number of teens with cancer now exceeds the number of children with cancer…Teenagers contract some of the most aggressive cancers that are made worse by their growth spurts. (Teenage Cancer Trust Health Facts Web Site 2006a)

The rise in incidence for adolescents can be contrasted with a comparatively lower increase for children. The findings of Steliarova- Foucher et al (2004) who have tracked the incidence of cancer across Europe since the 1970s show that over three decades the overall incidence has increased each year by 1% in children but by 1.5% in adolescents. Using data from the USA, Decker et al (2004) report a 30% rise in the last 20 years for adolescents compared to a 10% increase for younger children.

There is, however, an additional concern. According to Thomas et al (2006) improvements in outcomes for young adults lag well behind the advances achieved for children and older adults, the improvement in survival of young people between 1973-2001 being half that seen in children or older adults. These findings are endorsed by Albritton and Bleyer (2003) who say that the improvement in the survival rate among adolescents in the USA has been 50% less than for children and older adults. However, despite these comparatively worse outcomes, there is evidence of a decline in mortality. Based on a study of selected cancers amongst 15-24 year olds from 1965-1998 in Europe, the USA and Japan, Levi et al (2003:2611) document a decrease in mortality of 40%. Nevertheless, the decline in mortality from leukaemias and other neoplasms was smaller between the ages of 15-24 than it was for children. What improvements there have been are attributed largely to better treatments and inclusion in multi centre clinical trials.

Haase and Phillips (2004:145) attribute the relatively poorer outcomes to: unique biologies of cancer, unique medical and psychosocial needs, under representation in clinical trials, facing physical, emotional and social challenges that are experienced as particularly difficult. Yet these authors suggest that young adults with cancer can be rendered ‘invisible’ as research data frequently do not distinguish the age group clearly from that of children or older adults, and in addition they ‘rarely receive care in settings designed to meet their unique needs’(2004:145-146). So we can see that there is a need to develop services targeted at teenage and young adult cancer patients. According to Albritton and Bleyer (2003:2584):

Adolescents with cancer must be recognised as a subgroup of oncology patents with specific needs requiring dedicated interest and management… A further consideration is that the physical, emotional and social challenges posed by cancer in adolescent and early adult life are often unique and especially difficult for patients, families and health care providers alike; these needs remain largely unstudied and unmet. (2003:2854)

Birch et al (2003) suggest that provision of these unmet needs should be based on high quality statistics. However, while statistical data are central to establishing the aetiology of disease, and to the provision of appropriate medical care, an additional level of insight is needed. If as Albritton and Bleyer (2003:2595) argue, adolescents have many of the factors associated with ‘non-adherence’, an in depth understanding of the characteristics of teenagers and young adults and their experience of the illness and treatments must also play an integral part in designing services. This book attempts to fill the ‘unstudied’ gap through a qualitative approach that provides knowledge on what it is like to be a young adult with cancer. It is to be hoped that such an understanding will contribute to the provision of optimal care not only medically, but also help to support the cancer journey socially, emotionally and psychologically.