Unmet information and support needs in newly diagnosed thyroid cancer: comparison of adolescents/young adults (AYA) and older patients

Purpose Thyroid cancer (TC) is the most common cancer in adolescent and young adult (AYA) females ages 15-29 and second for 30-39. However, little research details the unmet support needs and survivorship concerns of TC patients. Methods TC patients >= 15 years of age at diagnosis completed online surveys through the thyroid cancer survivor (ThyCa) website. Survivors rated the importance of medical/physical (M/Ph), practical, and emotional/psychological (E/Ps) realms of information during diagnosis and treatment, as well as recollection of receiving such information. Comparison was made between AYAs and those >= 40 years at diagnosis. Results Of 1,113 respondents, most were female (88.3 %), part Caucasian (92.3 %), and treated in academic or private urban settings. More than 80 % of patients rated receiving information about most M/Ph matters very or extremely important and >70 % for most E/Ps concerns. However, few recalled receiving any information besides the surrounding surgery and radioiodine (RAI). AYAs were more often female, non-white, Hispanic, married with children, living with a spouse/significant other, and unemployed at diagnosis (p<0.001). Significant differences were noted in the importance AYAs placed on many M/Ph and practical matters, but not E/Ps ones. AYAs less commonly recalled receiving information on recurrence (p=0.038), long-term side effects (p=0.024), coping strategies (p=0.049), support groups (p=0.019), opportunities for meeting other survivors (p=0.009), or help with treatment decisions (p=0.036); they reported receiving less overall care for E/Ps concerns (p=0.016). Conclusion TC patients place high importance on receiving information regarding most aspects of TC treatment and survivorship care. However, these information needs and survivorship concerns are largely unmet, especially among AYAs. Implications for Cancer Survivors Participating in multidisciplinary and survivorship-focused TC care may alleviate some of these unmet information and support needs.