Primary Care Use before Cancer Diagnosis in Adolescents and Young Adults - A Nationwide Register Study

PLoS One. 2016 May 20;11(5):e0155933. doi: 10.1371/journal.pone.0155933. eCollection 2016.


Introduction: Survival rates of cancer patients have generally improved in recent years. However, children and older adults seem to have experienced more significant clinical benefits than adolescents and young adults (AYAs). Previous studies suggest a prolonged diagnostic pathway in AYAs, but little is known about their pre-diagnostic healthcare use. This study investigates the use of primary care among AYAs during the two years preceding a cancer diagnosis.

Methods: The study is a retrospective population-based matched cohort study using Danish nationwide registry data. All persons diagnosed with cancer during 2002-2011 in the age group 15-39 years were included (N = 12,306); each participant was matched on gender, age and general practice with 10 randomly selected references (N = 123,060). The use of primary healthcare services (face-to-face contacts, blood tests and psychometric tests) was measured during the two years preceding the diagnosis (index date), and collected data were analysed in a negative binomial regression model.

Results: The cases generally increased their use of primary care already from 8 months before a cancer diagnosis, whereas a similar trend was not found for controls. The increase was observed for all cancer types, but it started at different times: 17 months before a diagnosis of CNS tumour, 12 months before a diagnosis of soft tissue sarcoma, 9 months before a diagnosis of lymphoma, 5-6 months before a diagnosis of leukaemia, bone tumour or GCT, and 3 months before a diagnosis of malignant melanoma.

Conclusion: The use of primary care among AYAs increase several months before a cancer diagnosis. The diagnostic intervals are generally short for malignant melanomas and long for brain tumours. A prolonged diagnostic pathway may indicate non-specific or vague symptomatology and low awareness of cancer among AYAs primary-care personnel. The findings suggest potential of faster cancer diagnosis in AYAs.

MeSH terms

  • Adolescent
  • Adult
  • Female
  • General Practice / statistics & numerical data
  • Humans
  • Male
  • Neoplasms / diagnosis*
  • Primary Health Care / statistics & numerical data*
  • Registries / statistics & numerical data
  • Retrospective Studies
  • Survival Rate
  • Young Adult

Grant support

This work was supported by The Novo Nordisk Foundation, grant number 9107. The funder had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.