Association of self-reported presenting symptoms and timeliness of help-seeking among adolescents and young adults with cancer

Importance: Evidence relating to the presenting symptoms of adolescent and young adults with cancer can support the development of early diagnosis interventions. Objective: To examine common presenting symptoms in adolescents and young adults aged 12–24 years subsequently diagnosed with cancer and potential variation in time to help-seeking by presenting symptom. Design: Cross-sectional analysis of the BRIGHTLIGHT cohort. Information on 17 pre-specified presenting symptoms and the symptom-onset-to-help-seeking interval (patient interval) was collected through structured face-to-face interviews and linked to national cancer registry data. Setting: Multi-centre study across English hospitals. Exposures: Self-reported presenting symptoms. Main Outcomes and Measures: Frequencies of presenting symptoms and associated ‘symptom signatures’ by cancer group. Proportion of patients with each presenting symptom whose patient interval was greater than one month. Results: The study population consisted of 803 adolescents and young adults with valid symptom information (55% male, 63% aged 19–24 years, and 88% white ethnicity). The number of symptoms varied by cancer group: for example, 86% of leukaemia patients presented with two or more symptoms while only 31% of melanoma patients presented with multiple symptoms. In total, 352 unique symptom combinations were reported, with the 10 most frequent combinations accounting for 38% of patients. Lump or swelling was reported by over half the patients (prevalence (95% CI): 52% (49–56%)). Other common presenting symptoms across all cancers were extreme tiredness (38% (35–42%)), unexplained pain (35% (32–38%)), night sweats (24% (21–27%)), lymphadenopathy (24% (21–27%)), and weight loss (24% (21–27%)). The relative frequencies of presenting symptoms also varied by cancer group; some symptoms (such as lump/swelling) were highly prevalent across several cancer groups (seen in >50% of patients diagnosed with lymphomas, germ cell tumours, carcinomas, bone tumours, and soft-tissue sarcomas). Over one in four patients (27%) reported a patient interval longer than one month: this varied from 6% (fits/seizures) to 43% (recurrent infections). Conclusions and Relevance: Adolescents and young adults with cancer present with a broad spectrum of symptoms, some of which are shared across cancer types. The findings point to discordant presenting symptom prevalence estimates when information is obtained from patient report versus health records