International projects exist to improve cancer awareness and early cancer diagnosis (1) driven by an assumption that earlier detection translates to earlier stage disease and better survival.
Young people with cancer are a unique group presenting with a range of rare cancers. (2) A cancer diagnosis in adolescents and young adults (AYA), typically those aged around 13 years up to between 24 and 39 years depending on jurisdiction is an uncommon event. Consequently, internationally, young people frequently describe long and complex pathways to diagnosis. A number of factors contribute to this, including low cancer awareness in young people (3), a low suspicion of cancer in this group (a general practitioner may only see once AYA cancer diagnosis in their career) (4) and low positive predictive values (the number of times a potential cancer symptom goes on to be diagnosed as cancer) of potential cancer symptoms (5).
Despite frequent pleas from young people to improve the diagnostic experience the evidence on which to base any intervention, has, to date, been inconclusive. Studies describing the diagnostic experience of young people tend to be embedded in children or older adult studies, with smaller numbers of AYA participating (6). Furthermore, the outcomes associated with times and routes to diagnosis for this group have also remained inconclusive (6).
BRIGHTLIGHT is the largest study of young people aged 13-24 years at diagnosis in the world (7). Its primary aim is to evaluate specialist cancer care for this group. Within the study times and routes to cancer diagnosis have been examined. We have already identified particular groups of patients who are risk from prolonged patient intervals (time from noticing symptoms to seeking help), those with melanoma highlighting the need to continue to educate young people about the risks of sun exposure and symptoms which may be indicative of melanoma. We have also identified groups of patients who are more likely to have multiple GP consultations prior to referral, most notably young females compared to their male counterparts (8).
The reasons why young females are more likely to spend time in primary care compared to males warrants further exploration. The median time to cancer diagnosis in the BRIGHTLIGHT cohort is approximately 63 days, and for females it is 25 days longer than males. With similar patient intervals the extended time to diagnosis for females is likely to be related to multiple GP consultations and more research is needed to understand why and how we can best support our primary care colleages to identify potential cancer symptoms in young people and refer onto specialist services. A recent European study of AYA also reported a median time to diagnosis of 60 days, however considerable variation existed between European studies ranging from 43 days to 122 days (9). Although small in sample size this study highlights disparities in the diagnostic experience of AYA between European countries and may highlight healthcare systems that are more/less efficient at diagnosing young people with cancer.
Currently, outcomes associated with diagnostic intervals remain elusive despite this improving the diagnostic experience of young people with cancer remains a worthwhile pursuit. A recent U.K. research prioritisation exercise identified improving cancer diagnosis as number 4 of a Top 10 priority list for young people, carers and professionals (10).
Future engagement with healthcare systems following cancer treatment is critical to good long term health and ensuring young people are confident with their healthcare providers throughout the diagnostic journey is pivotal to this.
New data emerging from BRIGHTLIGHT study will be presented at the forthcoming AYA Congress and will explore relationships between potential cancer symptoms, diagnostic timeliness and potential outcomes.
About the Author
Dr Lorna Fern is the National Cancer Research Institutes Teenage, Young Adult and Germ Cell Clinical Studies Group Researcher and Patient/Public involvement lead. She currently Chairs the NCRI Health Services Research Subgroup. Dr Fern has driven the work of the group for over 10 years with an accumulated £3m of research funding across the patient pathway including BRIGHTLIGHT, the largest study of young people with cancer.
Excerpt from ‘Adolescent and young adult diagnostic timelines, pathways and impact on patient outcomes’, plenary on ‘AYA Priority Setting and Practice Innovation’ at the 3rd Global Adolescent & Young Adult Cancer Congress in Sydney from 4-6 December.
Funded by Teenage Cancer Trust.
- Birch J.M. Alston R.D., Kelsey A.M., Quinn M.J., Babb P., McNally RJ. Classification and incidence of cancers in adolescents and young adults in England 1979-1997.
- Hubbard G, Macmillan I, Canny A, Forbat L, Neal RD, O’Carroll RE, Haw S, Kyle RG. Cancer symptom awareness and barriers to medical help seeking in Scottish adolescents: a cross-sectional study. BMC Public Health. 2014 Oct 29;14:1117. doi: 10.1186/1471-2458-14-1117.
- Fern L.A, Birch R, Whelan J, Cooke M, Sutton S, Neal RD, Gerrand C, Hubbard G, Smith S, Lethaby C, Dommett R, Gibson F. Why can’t we improve the timeliness of cancer diagnosis in children, teenagers, and young adults? BMJ. 2013 Oct 29;347:f6493. doi: 10.1136/bmj.f6493.
- Dommett RM, Redaniel MT, Stevens MC, Hamilton W, Martin RM. Features of cancer in teenagers and young adults in primary care: a population-based nested case-control study. Br J Cancer. 2013 Jun 11;108(11):2329-33. doi: 10.1038/bjc.2013.191. Epub 2013 Apr 25.
- Lethaby CD, Picton S, Kinsey SE, Phillips R, van Laar M, Feltbower RG. A systematic review of time to diagnosis in children and young adults with cancer. Arch Dis Child. 2013 May;98(5):349-55. doi: 10.1136/archdischild-2012-303034. Epub 2013 Mar 9.
- http://www.brightlightstudy.com accessed 20.09.2018
- Herbert A, Lyratzopoulos G, Whelan J, Taylor RM, Barber J, Gibson 4,, Fern LA. Diagnostic timeliness in adolescents and young adults with cancer: a cross-sectional analysis of the BRIGHTLIGHT cohort. Lancet Child Adolesc Health. 2018 Mar;2(3):180-190. doi: 10.1016/S2352-4642(18)30004-X.
- Smith L, Pini S, Ferrari A, Yeomanson D, Hough R, Olsen PR, Gofti-Laroche L, Fleming T, Elliott M, Feltbower R, Kertesz G, Stark D9. Pathways to Diagnosis for Teenagers and Young Adults with Cancer in European Nations: A Pilot Study. J Adolesc Young Adult Oncol. 2018 Jul 23. doi: 10.1089/jayao.2018.0045
- http://www.jla.nihr.ac.uk/priority-setting-partnerships/teenage-and-young-adult-cancer/the-top-10-priorities.htm accessed 20.09.2018