The aim of this current study was to examine the role of illness perceptions and causal attributions on health-related quality of life among AYAs with cancer. Overall, our results suggest that higher negative illness perceptions among AYAs were associated with lower HRQOL across all domains (physical, social, anxiety, depression, fatigue, pain). In addition, several illness perception items were associated with varying aspects of HRQOL. We also found that AYAs were most likely to attribute causes of their cancer to factors associated with genetics/heredity, lifestyle, chemical/environmental, chance, and stress. AYAs solely holding onto internal attributions, such as lifestyle factors and stress, were more likely to exhibit higher levels of anxiety. Our findings extend previous research examining illness perceptions and causal attributions among AYAs with cancer by providing insight into specific cognitive and emotional representations of cancer that have implications for HRQOL. Results confirm the relevance of the Common-Sense Model of Self-Regulation and attribution theory for describing illness perceptions and cancer-related causal attributions and point towards targets for intervention that can address psychoeducational needs for AYAs with cancer.

Focusing on illness perceptions, AYAs on average rated moderate levels of symptoms (identity), concern, and personal control over their cancer, with higher levels seen among emotional response and consequences. Notably, AYAs seem to perceive their cancer as temporary and not lasting a long time (timeline). While the majority of AYAs (65.2%) were diagnosed with cancer more than 1 year ago, we found no significant differences between timeline and time since diagnosis, suggesting that while AYAs are often aware that cancer is considered a chronic disease, it will not last forever. This is consistent with previous research focusing on thyroid cancer survivors that, compared to middle- and older-aged adults, AYAs showed less negative perceptions of their illness continuing into the future [13]. However, while AYAs may not perceive their cancer to last a long time, AYA cancer survivors face several long-term medical and psychosocial late effects from cancer (e.g., cardiotoxicity, secondary cancers, cognitive ability, and relationship changes). The completion of cancer-related treatment may not constitute an immediate return to their pre-cancer lives [30] and requires significant long-term follow-up care focused on survivorship [31]. While this is often a topic for discussion among AYAs, framing conversations around the treatment aspect of cancer potentially not lasting a long time within the context of long-term survivorship may be beneficial for AYAs. Perceptions of timeline may also have been influenced by perceptions of treatment control. On average, AYAs felt that treatment for their cancer was/is extremely helpful.

Higher scores on illness perception items relating to symptoms and treatment control were associated with demographic variables in that AYAs identifying as other than non-Hispanic white (i.e., Black, Asian, Native Hawaiian/Pacific Islander, Hispanic) were more likely to endorse experiencing more symptoms (e.g., pain, fatigue) from their cancer and less likely to perceive their cancer-related treatment to be helpful. This is significant as a large body of research demonstrates racial and ethnic disparities in cancer treatment, cancer symptoms (e.g., pain), and cancer outcomes [32,33,34,35]. Increased awareness of these disparities among AYAs with cancer is essential to mitigate differences in treatment and to identify barriers to care. In addition, higher scores on illness perception items of symptoms and consequences were associated with medical variables in that AYAs diagnosed within the past 12 months as well as AYAs on active cancer treatment were more likely to perceive that cancer more severely affects their life. In addition, AYAs on active cancer treatment were also more likely to perceive more cancer-related symptoms. Together, these findings point to specific subgroups within AYAs with cancer that may benefit from more targeted and ongoing support during diagnosis and treatment and into survivorship.

Surprisingly, we found that AYAs perceived they understood their cancer very clearly. Given that 60.9% of AYAs identified a causal attribution for their cancer, it is likely that they felt they understood the etiology of cancer but not the specific cause of their cancer. Our causal attribution findings suggest that AYAs tend to ascribe causes of their cancer to both internal and external factors. While some causal attributions that AYAs mentioned are more likely to be rooted in the actual cause of their cancer, such as genetics and family history, other AYAs attributed causal attributions may be less likely to be rooted in the cause of the cancer, such as psychosocial stressors and certain environmental exposures. Our results additionally produce common themes of an external locus of control among AYAs (and cancer fate being at others’ discretion), which highlights an area for intervention, as multiple studies have found associations between external locus of control and decreased HRQOL, psychological well-being, and coping skills among individuals with cancer [36,37,38]. Overall, given that AYAs often noted multiple causal attributions for their cancer, future research should consider a focus on psychoeducation targeted towards perceived causal attributions surrounding AYAs’ cancer diagnoses.

When examining specific causal attributions of cancer, we found that AYAs most frequently attributed the cause of their cancer to genetic/heritability factors (37.7%). Genetics often play a role in cancer etiology among AYAs; however, lifestyle can exacerbate genetic predisposition [39]. Interestingly, within our sample, AYAs who attributed their cancer to genetic causes also had significantly higher levels of physical functioning. It is probable that those with genetic predisposition had an early awareness of increased cancer risk and have therefore made healthy choices throughout their life to avoid unfavorable outcomes that they may have experienced vicariously through family members with the same genetic cancer [40]. This may have served as a teachable moment among AYAs: a time after a serious health event that increases the likelihood of improving health behaviors in efforts to prevent disease [41].

AYAs also attributed their cancer almost equally to lifestyle factors (36.2%) as to genetics. While many causal attributions denoted an external locus of control, this suggests that AYAs with cancer may place internal blame for engaging in health-compromising behaviors (e.g., smoking, alcohol use, and unhealthy diet) leading to their diagnosis. While approximately 40% of cancer is attributable to potentially modifiable factors [42], this tends to occur over the course of one’s lifetime [43, 44] and may not be directly associated with cancer among AYAs. We also found depressive symptoms to be significantly higher among AYAs with lifestyle attributions. These findings may represent regret, guilt, and/or shame among AYAs who attribute their modifiable behaviors to their cancer. Therefore, internal causal attributions may require targeted supports to protect against negative psychological symptoms (depression, anxiety). A growing body of research has suggested that individuals who believe their cancer was not caused by their own actions or behaviors tend to cope better and experience fewer negative feelings [45].

Other cancer-related causal attributions draw attention to a multitude of other factors that AYAs perceive to be responsible for their cancer, including chemical and environmental exposures, which can be uncontrollable especially for individuals exposed to certain environments through work and life. AYAs also mentioned cancer-related causes aligning with chance, presumably in the control of a larger entity/force (e.g., “Bad luck,” “The Devil,” and “Fate”), aligning with previous research [13]. While we did not find significant associations between chance attribution and HRQOL, other research has suggested that attributing cancer to bad luck/chance is associated with better quality of life among childhood cancer survivors and lower anxiety among AYAs with cancer [22, 23].

Lastly, stress-related attributions were endorsed by approximately a quarter of AYAs and were significantly associated with both higher depressive and anxiety symptoms. Chronic stress can interfere with individuals’ ability to cope and adjust to their illness, potentially undermining the ability to adapt to and control their stress, possibly intensifying psychological distress [46]. While stress in general is difficult to tease apart, the context in which stress is noted qualitatively within our findings (e.g., personal stress, familial stress, school stress, and emotional stress) might provide insight into the types of stressors most prominent in AYAs’ day-to-day lives that are perceived to be attributable to their cancer. Further understanding these specific stressors may inform stress management and coping techniques specific to AYAs and promote a sense of control over cancer-related causes to reduce psychological burden.

This study has several strengths, including a comprehensive examination of illness perceptions and causal attributions on several domains of HRQOL among a diverse demographic and clinical sample of AYAs diagnosed with cancer. However, it is not without limitations. The smaller sample size and results not adjusted for multiple comparisons warrant caution in the interpretation of results. The current study was also cross-sectional in nature, precluding the ability to look at changes in perceptions and attributions over time. While research has suggested that illness perceptions tend to be stable [25], future research would benefit from examining relationships over time, across the survivorship continuum and at differing stages of diagnosis and treatment (e.g., early stage vs. metastatic and surgery only), as these relationships may differ.

In addition, while the results of our study support relationships between illness perception and causal attributions on HRQOL, the possibility of bidirectional relationships or alternate explanations remains. For example, domains of HRQOL could influence how AYAs perceive their illness identity (i.e., heighten how they experience their symptoms) and/or how they influence AYAs’ cancer-related causal attributions (e.g., depressive symptoms leading individuals to believe they were the cause of their cancer). Similarly, relationships between HRQOL, illness perceptions, and causal attributions are likely to be more dynamic and reciprocal than the unidirectional approach suggested by our statistical analyses. To further support these findings, future research would benefit from longitudinal designs and ecological momentary assessment methods to provide a more comprehensive understanding of these relationships as they unfold over time.