Discussion

Guided by the Model of Pathways to Treatment, we identified factors contributing to delayed cancer diagnosis among young adults across the appraisal, help-seeking, and diagnostic intervals, highlighting potentially modifiable targets for intervention. Most young adults experienced prolonged appraisal intervals due to misattributing symptoms to less serious causes. The help-seeking interval was relatively prompt for most participants, but delays occurred for some young adults who did not have adequate access and resources for seeking care, or who had low confidence in the care they would receive. Many young adults described lengthy delays in the diagnostic interval, often stemming from medical providers dismissing symptoms as nonserious. Across all intervals, young adults described a variety of delay factors that could be targeted in future intervention development.

The appraisal interval

The misattribution of symptoms to external stressors drove appraisal interval delays when young adults believed it was normal to experience stress-related detrimental physical changes during certain life events. In a qualitative study of older adult cancer survivors’ symptom appraisal, attributions were not commonly to stress [54], suggesting this may be more common among young adults.

As in previous studies, in middle-aged and older adults [55, 56] as well as young adults [35, 57], insufficient cancer symptom knowledge was a consistent barrier to timely diagnoses. Insufficient knowledge of health may have contributed to participants perceiving symptoms as unserious (e.g., poor understanding of women’s health). Education about the types of bodily changes warranting medical evaluation is critical because, although symptoms such as lumps and bleeding can be benign, they are also associated with a variety of health issues and necessitate evaluation by a medical professional.

Several young adults delayed care seeking due to low perceived susceptibility to serious disease, including cancer. Some believed their internal characteristics, particularly young age and healthy behaviors, fully protected them from severe disease. This sense of protection based on age and health behaviors was not identified as a delay factor in a systematic review of middle-aged and older adult delays [56]. Lifestyle change-related campaigns targeting smoking [58] or tanning [59] may have had an unintended consequence of exaggerating people’s perceptions of the influence of health behaviors on illness risk.

A common response to symptom information insufficiency was to seek information about symptoms online. In most instances, this reduced urgency for medical evaluation, while some sought information after a provider’s dismissal of symptoms as nonserious. The role of online information seeking on diagnosis delays is uncertain. In a study of adults of all ages, those who sought online information about symptoms experienced longer delays between their first symptom search and their eventual disease diagnosis [60]. Conversely, online health information may help empower patients and improve their self-advocacy abilities [61, 62]. Given the greater use of online health information by young adults compared to older adults [41], it will be important to explore the association between cancer diagnosis delays and online information seeking in the younger demographic specifically.

The help-seeking interval

Most young adults did not experience delays in the help-seeking interval; once they interpreted symptoms as warranting medical evaluation, they promptly arranged and attended a consultation. However, the young adults in this study had a higher rate of health care coverage than the larger US young adult population, and lack of health insurance is a crucial driver of young adult cancer diagnosis delays [30]. Some who felt they needed medical evaluation, but delayed pursuing a consultation, faced structurally rooted barriers to seeking care such as inability to miss work or negative past experiences with providers due to low socioeconomic status.

The diagnostic interval

Most young adults expressed frustration with the delays they experienced within the diagnostic interval. Because young adult cancer is rare and presents with wide-ranging and often nonspecific symptoms, most providers are unlikely to suspect cancer in this age group. Some young adults with strong self-advocacy abilities continued pursuing additional appointments, while less self-confident participants felt resigned to trusting the doctor’s initial interpretation; the latter resulted in longer diagnostic intervals. Although providers may be limited by insurance coverage, increasing pressure to meet with more patients, and other constraints, the experiences patients have with timely emergency rooms diagnoses could serve as an example that ordering diagnostic testing has the potential to shorten disease diagnostic timeliness.

Limitations and strengths

This study has several limitations. The sample is not statistically representative of US young adult demographics and was susceptible to selection bias that could limit our ability to understand the experiences of young adults who are less prone to participate in online research. There is also survival bias, as the experiences of patients who died from their disease or who have too severe symptoms to participate were not captured. Recall bias is possible given the study’s retrospective design and those interviewed closer to their diagnosis may have had better recall, but we are unable to evaluate accuracy. However, people often remember events surrounding significant life occurrences such as a cancer diagnosis [63, 64] and many patients in the study recalled extremely specific levels of detail about their symptoms (exact dates, exact google searches, weather on the day of appointments, etc.). We selected the current age eligibility cap of 45 pragmatically rather than on empirical grounds, and future studies should consider whether a narrower eligibility window better optimizes recall of pre-diagnosis experiences or whether a wider age range could improve recruitment of an already difficult-to-engage population. Related, we did not have eligibility criteria for time since diagnosis, and future studies should consider including explicit thresholds for this as well, as proximity to diagnosis may meaningfully influence recall quality. We are also unable to determine if a recalled symptom was related to the eventual cancer diagnosis; however, participants were probed to confirm if a provider concluded the relation between the symptom and disease was likely. A strength of this study is that it examined young adult cancer experiences across cancer types. While other studies have examined delays for specific types of cancer, such as early onset colorectal [65], there is a lack of research about general cancer delay causes for this age group. This study contributed needed insight into a growing disease burden in young adults. Finally, this study allows for comparison with other young adults cancer diagnostic pathway research by using constructs and definitions recommended by The Aarhus Statement [66].

Implications for communication and future directions

Our findings suggest multiple opportunities for communication and education efforts aimed at shortening the time to diagnosis for young adult cancer. Even if young adults with symptoms do not receive a cancer diagnosis, timely care seeking should still be encouraged for certain symptoms that may also be indicative of other types of serious diseases. To improve the appraisal interval duration, symptom awareness messaging on commonly used digital sources could educate about young adult cancer symptoms, such as those listed in the CAUTION! model, a mnemonic list of seven symptoms and seven sites typical in young adult cancer that has successfully improved knowledge in high school students [32, 38].

Improving patient-provider communication is likely a key path for shortening young adult cancer diagnostic delays. Young people could be trained on self-advocacy and how to confidently navigate the healthcare system. Although most young adults with symptoms will not be diagnosed with cancer, this age group is experiencing a growing burden of multiple chronic diseases (e.g., hypertension, chronic liver disease, autoimmunity, cancer) [67–70]. Providers may be delaying accurate care and treatment for many conditions by not ruling out these more serious illnesses with diagnostic testing.