Self-reported peripheral neuropathic symptoms in long-term adolescent and young adult (AYA) cancer survivors: results of the SURVAYA study

PURPOSE: Adolescent and young adult cancer survivors (AYAs; 18-39 years old at initial cancer diagnosis) face unique challenges throughout their disease trajectory and are, therefore, a distinct population within the oncology community. A common side effect of some cancer treatments is neuropathy, which can affect patients' quality of life ongoing. AYA-specific studies on long-term effects, such as neuropathy, are lacking. This study investigated the prevalence of, and factors associated with self-reported peripheral neuropathic symptoms in long-term AYA cancer survivors. METHODS: This questionnaire study (SURVAYA study) examined patient-reported outcomes among long-term AYA cancer survivors (5-20 years post-diagnosis). Data were collected through a questionnaire and by the Netherlands Cancer Registry. Analyses included descriptive statistics and multivariable logistic regression. RESULTS: Three thousand seven hundred forty-one AYAs were included in this secondary analysis. Overall, the prevalence of self-reported peripheral neuropathic symptoms was 19.8% and was higher among AYA cancer survivors who received chemotherapy. In addition, female sex, older age at diagnosis, primary education or none, secondary vocational education, higher vocational education, head and neck cancer, germ cell tumours, lymphoid haematological malignancies, thyroid cancer, current or former smoking, higher physical activity levels and rheumatoid arthritis were associated with a higher likelihood of reporting peripheral neuropathic symptoms. CONCLUSION: This study highlights the socio-demographic, clinical and health and lifestyle factors associated with self-reported peripheral neuropathic symptoms in Dutch long-term AYA cancer survivors. This can inform healthcare providers to further identify high-risk groups within the AYA cancer survivors and provide additional monitoring of these patients. Future research should include a longitudinal assessment of peripheral neuropathic symptoms, including baseline scores which were not available in this study.