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

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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References

  1. Bleyer A, Barr R, Hayes-Lattin B, Thomas D, Ellis C, Anderson B, et al. The distinctive biology of cancer in adolescents and young adults. Nat Rev Cancer. 2008;8(4):288–98. doi:10.1038/nrc2349.

    CAS  Article  PubMed  Google Scholar 

  2. Howlader N, Noone AM, Krapcho M, et al. SEER Cancer Statistics Review, 1975–2008, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2008/, based on November 2010 SEER data submission, posted to the SEER web site, 2011.

  3. Goodall S, King M, Ewing J, Smith N, Kenny P. Preferences for support services among adolescents and young adults with cancer or a blood disorder: a discrete choice experiment. Health Policy. 2012;107(2–3):304–11. doi:10.1016/j.healthpol.2012.07.004.

    Article  PubMed  Google Scholar 

  4. Zebrack B, Bleyer A, Albritton K, Medearis S, Tang J. Assessing the health care needs of adolescent and young adult cancer patients and survivors. Cancer. 2006;107(12):2915–23. doi:10.1002/cncr.22338.

    Article  PubMed  Google Scholar 

  5. Quinn GP, Murphy D, Sehovic I, Sawczyn K. Defining the whole of reproductive health in adolescent and young adult cancer populations: fertility is only one piece of the puzzle. Clin Pract. 2013;10(3):301–10.

    CAS  Article  Google Scholar 

  6. Wredenberg A, Lagouge M, Bratic A, Metodiev MD, Spahr H, Mourier A, et al. MTERF3 regulates mitochondrial ribosome biogenesis in invertebrates and mammals. PLoS Genet. 2013;9(1):e1003178. doi:10.1371/journal.pgen.1003178.

    PubMed Central  CAS  Article  PubMed  Google Scholar 

  7. Severa M, Giacomini E, Gafa V, Anastasiadou E, Rizzo F, Corazzari M, et al. EBV stimulates TLR- and autophagy-dependent pathways and impairs maturation in plasmacytoid dendritic cells: implications for viral immune escape. Eur J Immunol. 2013;43(1):147–58. doi:10.1002/eji.201242552.

    CAS  Article  PubMed  Google Scholar 

  8. D’Agostino NM, Penney A, Zebrack B. Providing developmentally appropriate psychosocial care to adolescent and young adult cancer survivors. Cancer. 2011;117(10):2329–34. doi:10.1002/cncr.26043.

    Article  PubMed  Google Scholar 

  9. Leonetti F, Capoccia D, Coccia F, Casella G, Baglio G, Paradiso F, et al. Obesity, type 2 diabetes mellitus, and other comorbidities: a prospective cohort study of laparoscopic sleeve gastrectomy vs medical treatment. Arch Surgery (Chicago, Ill : 1960). 2012;147(8):694–700. doi:10.1001/archsurg.2012.222.

    CAS  Article  Google Scholar 

  10. Keegan THM, Lichtensztajn DY, Kato I, Kent EE, Wu XC, West MM, et al. Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study. J Cancer Survivorship. 2012;6(3):239–50. doi:10.1007/s11764-012-0219-9.

    Article  Google Scholar 

  11. Clinton-McHarg T, Carey M, Sanson-Fisher R, D’Este C, Shakeshaft A. Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire-Young People (CNQ-YP). Health and quality of life outcomes. 2012;10. doi:10.1186/1477-7525-10-13.

  12. Clinton-McHarg T, Carey M, Sanson-Fisher R, Shakeshaft A, Rainbird K. Measuring the psychosocial health of adolescent and young adult (AYA) cancer survivors: a critical review. Health and quality of life outcomes. 2010;8. doi:10.1186/1477-7525-8-25.

  13. Petruccioli E, Romagnoli A, Corazzari M, Coccia EM, Butera O, Delogu G, et al. Specific T cells restore the autophagic flux inhibited by Mycobacterium tuberculosis in human primary macrophages. J Infectious Dis. 2012;205(9):1425–35. doi:10.1093/infdis/jis226.

    CAS  Article  Google Scholar 

  14. Mostoufi-Moab S, Barakat LP, Bauer AJ. Quality of life in adolescent patients with differentiated thyroid cancer: moving beyond survival. J Clin Endocrinol Metab. 2012;97(10):3453–6.

    CAS  Article  PubMed  Google Scholar 

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

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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

Keywords

  • Thyroid cancer
  • AYA
  • Information needs
  • Support needs