Surveying the mental health of adolescent and young adult cancer survivors with treatment derived late effects




Mitchell, William A.
Howe-Martin, Laura
Orlino, Angela
Jetelina, Katelyn
Berry, Emily
Argenbright, Keith


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Purpose: Survival has steadily improved for adolescent and young adult (AYA) cancer survivors over the last 25 years, yet more information is still needed to understand the unique challenges facing AYA cancer survivors resulting from the development late effects due to treatment, and how it may impact mental health in this population. As an example, occurrence of cardiotoxicity, one of the most severe treatment-based side effects, could be expected to have a larger impact on mental health than less severe side effects, like peripheral neuropathy, osteopenia, or gonadal dysfunction. Our aim is to describe the impact of these late effects on patient mental health using semi-structured interviews completed with patients receiving care through the After the Cancer Experience (ACE) program at Children's Medical Center in Dallas. Methods: English-speaking patients who were between 15 and 55 years of age with a documented diagnosis of cancer treatment related late effect, were eligible to participate in the study. To date, three patients have completed the necessary study questionnaires, including the Personal Health Questionnaire - 9 (PHQ-9) for depression, Generalized Anxiety Disorder Scale (GAD-7), Quality of Life Patient/Cancer Survivor Version (QOL-CSV), and the Healthcare System Distrust Scale, and the corresponding semi-structured interview. Results: Participants were primarily female (n = 2) and the average age at diagnosis was 16 years. At time of study participation, patient age ranged from 24 to 52 years. All participants received chemotherapy as their primary course of treatment, with two of three also undergoing surgery as part of their treatment plan. Late effect diagnoses include peripheral neuropathy, foot drop, and cardiotoxicity. Conclusion: AYA cancer survivors have a unique set of circumstances when diagnosed with cancer specific to their age demographic. This population is receiving a cancer diagnosis during an integral time of forming individual identity and social growth. The challenging themes highlighted in these patient interviews include identity formation and need for social and emotional independence, some of the most impactful challenges in the AYA population; these findings are consistent with literature. While prior societal norms and structural challenges previously made addressing mental health difficult, patients now seem to have greater access to mental health resources, including consistent therapy, which appears to have lessened the impact of a subsequent late effect diagnosis on the patient's overall mental health. These interviews highlight the importance of individually tailored multimodal care to address the unique needs and distinct circumstances specific to this age demographic. Specifically, neglecting mental health during treatment, can trigger previously unrecognized or repressed emotions to resurface with the emergence of a diagnosis related to cancer treatment, whereas, the early detection of mental health concerns in cancer patients may not only address the immediate mental health needs, but also better equip a patient to maintain long term positive mental health when faced with subsequent challenges and diagnoses related to cancer treatment.