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

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Abstract

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.

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Conflict of interest

All authors take full responsibility for the manuscript and have no conflicts of interest of financial disclosures to report.

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Authors and Affiliations

  1. Division of Breast/Soft Tissue and Endocrine Surgery, Department of Surgery, Keck School of Medicine, University of Southern California, 1510 San Pablo St Suite 412K, Los Angeles, CA, 90033, USA

    Melanie Goldfarb

  2. Department of Pediatrics, University of California, Los Angeles, Los Angeles, CA, 90095, USA

    Jacqueline Casillas

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  1. Melanie Goldfarb
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  2. Jacqueline Casillas
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Correspondence to Melanie Goldfarb.

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Goldfarb, M., Casillas, J. Unmet information and support needs in newly diagnosed thyroid cancer: comparison of adolescents/young adults (AYA) and older patients. J Cancer Surviv 8, 394–401 (2014). https://doi.org/10.1007/s11764-014-0345-7

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  • DOI: https://doi.org/10.1007/s11764-014-0345-7

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