Skip to main content
SpringerLink
Log in

Epidemiology

  • Chapter
  • First Online:
Handbook of Cancer Survivorship

Abstract

Cancer prevalence, the number of individuals living with a history of cancer, in the United States and globally is growing steadily. This trend will continue across the next two decades due largely to the aging of the world’s population. Our understanding of who these individuals represent, and the myriad challenges they face after treatment ends has paralleled the steady growth in the number of cancer survivors. Clear from the research to date is that while lifespan after cancer is increasing, the challenges of survivorship, specifically the health and function of individuals after cancer, are diverse and only just beginning to be systematically tracked. Understanding the unique burden of carrying a history of cancer remains a work in progress. In this chapter, we will briefly review the history of the survivorship movement and present current data on the demography of the cancer survivor population. The major platforms used to study survivors—including both their strengths and limitations, will be discussed, along with seminal findings from these sources, and recommendations provided regarding future directions for survivorship research.

Note. All tables and figures are in the public domain. US Government.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 299.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Hardcover Book
USD 379.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Similar content being viewed by others

References

  1. Mukherjee S. The emperor of all maladies: a biography of cancer. New York: Scribner; 2010.

    Google Scholar 

  2. Leigh S. Defining our destiny. In: Hoffman B, editor. A cancer Survivor’s almanac: charting the journey. Minneapolis, MN: Chronimed Publishing; 1996. p. 261–71.

    Google Scholar 

  3. Jemal A, Ward EM, Johnson CJ, Cronin KA, Ma J, Ryerson B, et al. Annual report to the nation on the status of cancer, 1975–2014, featuring survival. J Natl Cancer Inst. 2017;109(9): djx030.

    Google Scholar 

  4. de Moor JS, Mariotto AB, Parry C, Alfano CM, Padgett L, Kent EE, et al. Cancer survivors in the United States: prevalence across the survivorship trajectory and implications for care. Cancer Epidemiol Biomark Prev. 2013;22(4):561–70.

    Article  Google Scholar 

  5. Siegel RL, Miller KD, Jemal A. Cancer statistics, 2017. CA Cancer J Clin. 2017;67(1):7–30.

    Article  PubMed  Google Scholar 

  6. Falisi AL, Wiseman KP, Gaysynsky A, Scheideler JK, Ramin DA, Chou W. Social media for breast cancer survivors: a literature review. J Cancer Surviv. 2017;11(6):808–21.

    Article  PubMed  Google Scholar 

  7. Bernat JKCK, Blanch-Hartigan D. Cancer survivors as activated patients: exploring the relationship between cancer history and patient activation. J Psychosoc Oncol. 2017;35(2):239–47.

    Article  PubMed  Google Scholar 

  8. Carlson LE, Zelinski E, Toivonen K, Flynn M, Qureshi M, Piedalue KA, et al. Mind-body therapies in cancer: what is the latest evidence? Curr Oncol Rep. 2017;19(10):67.

    Google Scholar 

  9. Vigano A, Kasvis P, Di Tomasso J, Gillis C, Kilgour R, Carli F. Pearls of optimizing nutrition and physical performance of older adults undergoing cancer therapy. J Geriatr Oncol. 2017;8(6):428–36.

    Article  PubMed  Google Scholar 

  10. Centers for Disease Control and Prevention. Cancer survivorship—United States, 1971–2001. MMWR. 2004;53:526–9.

    Google Scholar 

  11. Howlader NNA, Krapcho M, Miller D, Bishop K, Kosary CL, Yu M, Ruhl J, Tatalovich Z, Mariotto A, Lewis DR, Chen HS, Feuer EJ, Cronin KA. SEER Cancer Statistics Review, 1975-2014. Bethesda, MD: National Cancer Institute; 2017.

    Google Scholar 

  12. Deimling GT, Bowman KF, Wagner LJ. Cancer survivorship and identity among long-term survivors. Cancer Investig. 2007;25(8):758–65.

    Article  Google Scholar 

  13. Hannum SM, Clegg Smith K, Coa K, Klassen AC. Identity reconstruction among older cancer survivors: age and meaning in the context of a life-altering illness. J Psychosoc Oncol. 2016;34(6):477–92.

    Article  PubMed  Google Scholar 

  14. Cheung SY, Delfabbro P. Are you a cancer survivor? A review on cancer identity. J Cancer Surviv. 2016;10(4):759–71.

    Article  PubMed  Google Scholar 

  15. Wronski S. Defining cancer survivor and cancer survivorship: the who, what, and when. Psicooncologia. 2015;12(1):7–18.

    Google Scholar 

  16. Mullan F. Seasons of survival: reflections of a physician with cancer. N Engl J Med. 1985;313(4):270–3.

    Article  CAS  PubMed  Google Scholar 

  17. Surbone A, Tralongo P. Categorization of cancer survivors: why we need it. J Clin Oncol. 2016;34(28):3372–4.

    Article  PubMed  Google Scholar 

  18. Clark EJ, Stovall EL, Leigh S, Siu AL, Austin DK, Rowland JH. Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability1995 November 13, 1995.

    Google Scholar 

  19. Centers for Disease Control and Prevention and Lance Armstrong Foundation. A national action plan for cancer survivorship: advancing public health strategies. Atlanta, GA: Centers for Disease Control and Prevention and the Lance Armstrong Foundation, 2004.

    Google Scholar 

  20. Institute of Medicine and National Research Council. Childhood cancer survivorship: improving care and quality of life. Washington, DC: The National Academies Press; 2003. https://doi.org/10.17226/10767

    Google Scholar 

  21. President’s Cancer Panel. 2005–2006 annual report: assessing progress, advancing change. Bethesda, MD: National Cancer Institute; 2006.

    Google Scholar 

  22. President’s Cancer Panel. 2003–2004 annual report: living beyond cancer: finding a new balance. Bethesda, MD, U.S. Department of Health and Human Services, National Institutes of Health, National Cancer Institute; 2004.

    Google Scholar 

  23. Institute of Medicine and National Research Council. From cancer patient to cancer survivor – lost in transition: an American Society of Clinical Oncology and Institute of Medicine Symposium. Washington, DC: The National Academies Press; 2006. https://doi.org/10.17226/11613

    Google Scholar 

  24. Institute of Medicine. Delivering high-quality cancer care: charting a new course for a system in crisis. Washington, DC: The National Academies Press; 2013. https://doi.org/10.17226/18359

    Google Scholar 

  25. Kent EE, Ambs A, Mitchell SA, Clauser SB, Smith AW, Hays RD. Health-related quality of life in older adult survivors of selected cancers: data from the SEER-MHOS linkage. Cancer. 2015;121(5):758–65.

    Article  PubMed  Google Scholar 

  26. Phillips SM, Padgett LS, Leisenring WM, Stratton KK, Bishop K, Krull KR, et al. Survivors of childhood cancer in the United States: prevalence and burden of morbidity. Cancer Epidemiol Biomark Prev. 2015;24(4):653–63.

    Article  Google Scholar 

  27. Miller KD, Siegel RL, Lin CC, Mariotto AB, Kramer JL, Rowland JH, et al. Cancer treatment and survivorship statistics, 2016. CA Cancer J Clin. 2016;66(4):271–89.

    Article  PubMed  Google Scholar 

  28. Jagsi R, Pottow JA, Griffith KA, Bradley C, Hamilton AS, Graff J, et al. Long-term financial burden of breast cancer: experiences of a diverse cohort of survivors identified through population-based registries. J Clin Oncol. 2014;32(12):1269–76.

    Article  PubMed  PubMed Central  Google Scholar 

  29. Mariotto AB, Rowland JH, Ries LA, Scoppa S, Feuer EJ. Multiple cancer prevalence: a growing challenge in long-term survivorship. Cancer Epidemiol Biomark Prev. 2007;16(3):566–71.

    Article  Google Scholar 

  30. Mariotto AB, Rowland JH, Yabroff KR, Scoppa S, Hachey M, Ries L, et al. Long-term survivors of childhood cancers in the United States. Cancer Epidemiol Biomark Prev. 2009;18(4):1033–40.

    Article  Google Scholar 

  31. Snyder CF, Frick KD, Herbert RJ, Blackford AL, Neville BA, Lemke KW, et al. Comorbid condition care quality in cancer survivors: role of primary care and specialty providers and care coordination. J Cancer Surviv. 2015;9(4):641–9.

    Article  PubMed  PubMed Central  Google Scholar 

  32. Wu XC, Prasad PK, Landry I, Harlan LC, Parsons HM, Lynch CF, et al. Impact of the AYA HOPE comorbidity index on assessing health care service needs and health status among adolescents and young adults with cancer. Cancer Epidemiol Biomark Prev. 2015;24(12):1844–9.

    Article  Google Scholar 

  33. Parry C, Kent EE, Mariotto AB, Alfano CM, Rowland JH. Cancer survivors: a booming population. Cancer Epidemiol Biomark Prev. 2011;20(10):1996–2005.

    Article  Google Scholar 

  34. Bluethmann SM, Mariotto AB, Rowland JH. Anticipating the "silver tsunami": prevalence trajectories and comorbidity burden among older cancer survivors in the United States. Cancer Epidemiol Biomark Prev. 2016;25(7):1029–36.

    Article  Google Scholar 

  35. DeSantis CE, Lin CC, Mariotto AB, Siegel RL, Stein KD, Kramer JL, et al. Cancer treatment and survivorship statistics, 2014. CA Cancer J Clin. 2014;64(4):252–71.

    Article  PubMed  Google Scholar 

  36. Erikson C, Salsberg E, Forte G, Bruinooge S, Goldstein M. Future supply and demand for oncologists: challenges to assuring access to oncology services. J Oncol Pract. 2007;3(2):79–86.

    Article  PubMed  PubMed Central  Google Scholar 

  37. Warren JL, Mariotto AB, Meekins A, Topor M, Brown ML. Current and future utilization of services from medical oncologists. J Clin Oncol. 2008;26(19):3242–7.

    Article  PubMed  Google Scholar 

  38. AAMC Predicts Significant Primary Care Physician Shortage by 2025. Am Fam Physician. 2015;91(7):425.

    Google Scholar 

  39. Snavely TM. Brief economic analysis of the looming nursing shortage in the United States. Nurs Econ. 2016;34(2):98–100.

    Google Scholar 

  40. Hewitt M, Rowland JH, Yancik R. Cancer survivors in the United States: age, health, and disability. J Gerontol A Biol Sci Med Sci. 2003;58(1):82–91.

    Article  PubMed  Google Scholar 

  41. Williams GR, Mackenzie A, Magnuson A, Olin R, Chapman A, Mohile S, et al. Comorbidity in older adults with cancer. J Geriatr Oncol. 2016;7(4):249–57.

    Article  PubMed  Google Scholar 

  42. Hurria A, Levit LA, Dale W, Mohile SG, Muss HB, Fehrenbacher L, et al. Improving the evidence base for treating older adults with cancer: American Society of Clinical Oncology Statement. J Clin Oncol. 2015;33(32):3826–33.

    Article  PubMed  Google Scholar 

  43. Smith BD, Smith GL, Hurria A, Hortobagyi GN, Buchholz TA. Future of cancer incidence in the United States: burdens upon an aging, changing nation. J Clin Oncol. 2009;27(17):2758–65.

    Article  PubMed  Google Scholar 

  44. Warren JL, Yabroff KR. Challenges and opportunities in measuring cancer recurrence in the United States. J Natl Cancer Inst. 2015;107(8):djv134.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  45. Warren JL, Mariotto A, Melbert D, Schrag D, Doria-Rose P, Penson D, et al. Sensitivity of Medicare claims to identify cancer recurrence in elderly colorectal and breast cancer patients. Med Care. 2016;54(8):e47-e54.

    Article  PubMed Central  Google Scholar 

  46. Belcher S, Hausmann E, Cohen S, Donovan H, Schlenk E. Examining the relationship between multiple primary cancers and psychological distress: a review of current literature. Psychooncology. 2016;

    Google Scholar 

  47. Shortreed SM, Johnson E, Rutter CM, Kamineni A, Wernli KJ, Chubak J. Cohort restriction based on prior enrollment: examining potential biases in estimating cancer and mortality risk. Observat Stud. 2016;2:51–64.

    Google Scholar 

  48. Chubak J, Boudreau DM, Wirtz HS, McKnight B, Weiss NS. Threats to validity of nonrandomized studies of postdiagnosis exposures on cancer recurrence and survival. J Natl Cancer Inst. 2013;105(19):1456–62.

    Article  PubMed  PubMed Central  Google Scholar 

  49. Ganz PA, Hussey MA, Moinpour CM, Unger JM, Hutchins LF, Dakhil SR, et al. Late cardiac effects of adjuvant chemotherapy in breast cancer survivors treated on Southwest Oncology Group protocol s8897. J Clin Oncol. 2008;26(8):1223–30.

    Article  CAS  PubMed  Google Scholar 

  50. Beitz J, Gnecco C, Justice R. Quality-of-life end points in cancer clinical trials: the U.S. Food and Drug Administration perspective. J Natl Cancer Inst Monogr. 1996;(20):7–9.

    Google Scholar 

  51. Nayfield SG, Ganz PA, Moinpour CM, Cella DF, Hailey BJ. Report from a National Cancer Institute (USA) workshop on quality of life assessment in cancer clinical trials. Qual Life Res. 1992;1(3):203–10.

    Article  CAS  PubMed  Google Scholar 

  52. Kiebert GM, Curran D, Aaronson NK. Quality of life as an endpoint in EORTC clinical trials. European Organization for Research and Treatment for Cancer. Stat Med. 1998;17(5–7):561–9.

    Article  CAS  PubMed  Google Scholar 

  53. Wilson MK, Karakasis K, Oza AM. Outcomes and endpoints in trials of cancer treatment: the past, present, and future. Lancet Oncol. 2015;16(1):e32-e42.

    Google Scholar 

  54. Meyerhardt JA, Sato K, Niedzwiecki D, Ye C, Saltz LB, Mayer RJ, et al. Dietary glycemic load and cancer recurrence and survival in patients with stage III colon cancer: findings from CALGB 89803. J Natl Cancer Inst. 2012;104(22):1702–11.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  55. National Institutes of Health. Breast Cancer WEight Loss Study (BWEL Study) 2017. Available from: https://clinicaltrials.gov/ct2/show/NCT02750826.

  56. Greenlee H, Unger JM, LeBlanc M, Ramsey S, Hershman DL. Association between body mass index and cancer survival in a pooled analysis of 22 clinical trials. Cancer Epidemiol Biomark Prev. 2017;26(1):21–9.

    Article  Google Scholar 

  57. Denicoff AM, McCaskill-Stevens W, Grubbs SS, Bruinooge SS, Comis RL, Devine P, et al. The National Cancer Institute-American Society of Clinical Oncology Cancer Trial Accrual Symposium: summary and recommendations. J Oncol Pract/Am Soc Clin Oncol. 2013;9:267–76.

    Article  Google Scholar 

  58. Langford AT, Resnicow K, Dimond EP, Denicoff AM, Germain DS, McCaskill-Stevens W, et al. Racial/ethnic differences in clinical trial enrollment, refusal rates, ineligibility, and reasons for decline among patients at sites in the National Cancer Institute’s Community Cancer Centers Program. Cancer. 2014;120(6):877–84.

    Article  PubMed  Google Scholar 

  59. Unger JM, Cook E, Tai E, Bleyer A. The role of clinical trial participation in cancer research: barriers, evidence, and strategies. Am Soc Clin Oncol Educ Book. 2016;35:185–98.

    Article  PubMed  PubMed Central  Google Scholar 

  60. Kroenke CH, Rosner B, Chen WY, Kawachi I, Colditz GA, Holmes MD. Functional impact of breast cancer by age at diagnosis. J Clin Oncol. 2004;22(10):1849–56.

    Article  PubMed  Google Scholar 

  61. Holmes MD, Chen WY, Feskanich D, Kroenke CH, Colditz GA. Physical activity and survival after breast cancer diagnosis. JAMA. 2005;293(20):2479–86.

    Article  CAS  PubMed  Google Scholar 

  62. Meyerhardt JA, Giovannucci EL, Holmes MD, Chan AT, Chan JA, Colditz GA, et al. Physical activity and survival after colorectal cancer diagnosis. J Clin Oncol. 2006;24(22):3527–34.

    Article  PubMed  Google Scholar 

  63. Van Blarigan EL, Meyerhardt JA. Role of physical activity and diet after colorectal cancer diagnosis. J Clin Oncol. 2015;33(16):1825–34.

    Article  PubMed  PubMed Central  Google Scholar 

  64. Armstrong GT, Chen Y, Yasui Y, Leisenring W, Gibson TM, Mertens AC, et al. Reduction in late mortality among 5-year survivors of childhood cancer. N Engl J Med. 2016;374(9):833–42.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  65. Robison LL, Armstrong GT, Boice JD, Chow EJ, Davies SM, Donaldson SS, et al. The Childhood Cancer Survivor Study: a National Cancer Institute-supported resource for outcome and intervention research. J Clin Oncol. 2009;27(14):2308–18.

    Article  PubMed  PubMed Central  Google Scholar 

  66. Robison LL, Mertens AC, Boice JD, Breslow NE, Donaldson SS, Green DM, et al. Study design and cohort characteristics of the Childhood Cancer Survivor Study: a multi-institutional collaborative project. Med Pediatr Oncol. 2002;38(4):229–39.

    Article  PubMed  Google Scholar 

  67. Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, et al. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. 2006;355(15):1572–82.

    Article  CAS  PubMed  Google Scholar 

  68. Ness KK, Armstrong GT, Kundu M, Wilson CL, Tchkonia T, Kirkland JL. Frailty in childhood cancer survivors. Cancer. 2015;121(10):1540–7.

    Article  PubMed  Google Scholar 

  69. Kirchhoff AC, Leisenring W, Krull KR, Ness KK, Friedman DL, Armstrong GT, et al. Unemployment among adult survivors of childhood cancer: a report from the childhood cancer survivor study. Med Care. 2010;48(11):1015–25.

    Article  PubMed  PubMed Central  Google Scholar 

  70. Brinkman TM, Zhu L, Zeltzer LK, Recklitis CJ, Kimberg C, Zhang N, et al. Longitudinal patterns of psychological distress in adult survivors of childhood cancer. Br J Cancer. 2013;109(5):1373–81.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  71. Chow EJ, Stratton KL, Leisenring WM, Oeffinger KC, Sklar CA, Donaldson SS, et al. Pregnancy after chemotherapy in male and female survivors of childhood cancer treated between 1970 and 1999: a report from the Childhood Cancer Survivor Study cohort. Lancet Oncol. 2016;17(5):567–76.

    Article  PubMed  PubMed Central  Google Scholar 

  72. Green DM, Whitton JA, Stovall M, Mertens AC, Donaldson SS, Ruymann FB, et al. Pregnancy outcome of female survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Am J Obstet Gynecol. 2002;187(4):1070–80.

    Article  PubMed  Google Scholar 

  73. Zeltzer LK, Recklitis C, Buchbinder D, Zebrack B, Casillas J, Tsao JC, et al. Psychological status in childhood cancer survivors: a report from the Childhood Cancer Survivor Study. J Clin Oncol. 2009;27(14):2396–404.

    Article  PubMed  PubMed Central  Google Scholar 

  74. Ness KK, Hudson MM, Jones KE, et al. EFfect of temporal changes in therapeutic exposure on self-reported health status in childhood cancer survivors. Ann Intern Med. 2017;166(2):89–98.

    Article  PubMed  Google Scholar 

  75. Kwan ML, Ambrosone CB, Lee MM, Barlow J, Krathwohl SE, Ergas IJ, et al. The pathways study: a prospective study of breast cancer survivorship within Kaiser Permanente Northern California. Cancer Causes Control: CCC. 2008;19(10):1065–76.

    Article  PubMed  Google Scholar 

  76. Ma H, Sullivan-Halley J, Smith AW, Neuhouser ML, Alfano CM, Meeske K, et al. Estrogenic botanical supplements, health-related quality of life, fatigue, and hormone-related symptoms in breast cancer survivors: a HEAL study report. BMC Complement Altern Med. 2011;11:109.

    Article  PubMed  PubMed Central  Google Scholar 

  77. Bandera EV, Chandran U, Hong C-C, Troester MA, Bethea TN, Adams-Campbell LL, et al. Obesity, body fat distribution, and risk of breast cancer subtypes in African American women participating in the amber consortium. Breast Cancer Res Treat. 2015;150(3):655–66.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  78. Nechuta SJ, Caan BJ, Chen WY, Flatt SW, Lu W, Patterson RE, et al. The after breast cancer pooling project: rationale, methodology, and breast cancer survivor characteristics. Cancer Causes Control. 2011;22(9):1319–31.

    Article  PubMed  PubMed Central  Google Scholar 

  79. Liesenfeld DB, Grapov D, Fahrmann JF, Salou M, Scherer D, Toth R, et al. Metabolomics and transcriptomics identify pathway differences between visceral and subcutaneous adipose tissue in colorectal cancer patients: the ColoCare study. Am J Clin Nutr. 2015;102(2):433–43.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  80. Litzelman K, Kent EE, Rowland JH. Social factors in informal cancer caregivers: the interrelationships among social stressors, relationship quality, and family functioning in the CanCORS dataset. Cancer. 2016;122(2):278–86.

    Article  PubMed  Google Scholar 

  81. NIH Research Portfolio Online Reporting Tools (RePORT). Detroit Research on Cancer Survivors (Detroit ROCS) 2017. Available from: https://projectreporter.nih.gov/project_info_description.cfm?aid=9107577&icde=35668016.

  82. Chlebowski RT, Aragaki AK, Anderson GL, Thomson CA, Manson JE, Simon MS, et al. Low-fat dietary pattern and breast cancer mortality in the Women’s health initiative randomized controlled trial. J Clin Oncol. 2017;35(25):2919–26.

    Article  PubMed  PubMed Central  Google Scholar 

  83. Travis LB, Fossa SD, Sesso HD, Frisina RD, Herrmann DN, Beard CJ, et al. Chemotherapy-induced peripheral neurotoxicity and ototoxicity: new paradigms for translational genomics. J Natl Cancer Inst. 2014;106(5):dju044.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  84. Chlebowski RT, Schottinger JE, Shi J, Chung J, Aromatase Inhibitor HR. Tamoxifen and endometrial cancer in breast cancer survivors. Cancer. 2015;121(13):2147–55.

    Article  CAS  PubMed  Google Scholar 

  85. Caan BJ, Sweeney C, Habel LA, Kwan M, Kroenke C, Weltzien E, et al. Intrinsic subtypes from the PAM50 gene expression assay in a population-based breast cancer survivor cohort: prognostication of short and long term outcomes. Cancer Epidemiol Biomark Prev. 2014;23(5):725–34.

    Article  CAS  Google Scholar 

  86. Gatza ML, Silva GO, Parker JS, Fan C, Perou CM. An integrated genomics approach identifies drivers of proliferation in luminal subtype human breast cancer. Nat Genet. 2014;46(10):1051–9.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  87. Centers for Disease Control and Prevention. Surveys and Data Sets 2017. Available from: https://www.cdc.gov/cancer/survivorship/what_cdc_is_doing/surveys.htm.

  88. National Cancer Institute. Health Information National Trends Survey (HINTS) 2017. Available from: https://hints.cancer.gov/about.aspx.

  89. Yabroff KR, Dowling E, Rodriguez J, Ekwueme DU, Meissner H, Soni A, et al. The Medical Expenditure Panel Survey (MEPS) experiences with cancer survivorship supplement. J Cancer Surviv. 2012;6(4):407–19.

    Article  PubMed  PubMed Central  Google Scholar 

  90. Weaver KE, Forsythe LP, Reeve BB, Alfano CM, Rodriguez JL, Sabatino SA, et al. Mental and physical health–related quality of life among U.S. Cancer survivors: population estimates from the 2010 National Health Interview Survey. Cancer Epidemiol Biomark Prev. 2012;21(11):2108–17.

    Article  Google Scholar 

  91. Guy GP, Yabroff KR, Ekwueme DU, Rim SH, Li R, Richardson LC. Economic burden of chronic conditions among survivors of cancer in the United States. J Clin Oncol. 2017;35(18):2053–61.

    Article  PubMed  Google Scholar 

  92. Blanch-Hartigan D, Chawla N, Moser RP, Finney Rutten LJ, Hesse BW, Arora NK. Trends in cancer survivors’ experience of patient-centered communication: results from the Health Information National Trends Survey (HINTS). J Cancer Surviv. 2016;10(6):1067–77.

    Article  PubMed  Google Scholar 

  93. Potosky AL, Harlan LC, Stanford JL, Gilliland FD, Hamilton AS, Albertsen PC, et al. Prostate cancer practice patterns and quality of life: the Prostate Cancer Outcomes Study. J Natl Cancer Inst. 1999;91(20):1719–24.

    Article  CAS  PubMed  Google Scholar 

  94. Arora NK, Hamilton AS, Potosky AL, Rowland JH, Aziz NM, Bellizzi KM, et al. Population-based survivorship research using cancer registries: a study of non-Hodgkin’s lymphoma survivors. J Cancer Surviv. 2007;1(1):49–63.

    Article  PubMed  Google Scholar 

  95. Arora NK, Reeve BB, Hays RD, Clauser SB, Oakley-Girvan I. Assessment of quality of cancer-related follow-up care from the cancer survivor’s perspective. J Clin Oncol. 2011;29(10):1280–9.

    Article  PubMed  PubMed Central  Google Scholar 

  96. Weaver KE, Aziz NM, Arora NK, Forsythe LP, Hamilton AS, Oakley-Girvan I, et al. Follow-up care experiences and perceived quality of care among long-term survivors of breast, prostate, colorectal, and gynecologic cancers. J Oncol Pract. 2014;10(4):e231–9.

    Article  PubMed  PubMed Central  Google Scholar 

  97. Harlan LC, Lynch CF, Keegan TH, Hamilton AS, Wu XC, Kato I, et al. Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study. J Cancer Surviv. 2011;5(3):305–14.

    Article  PubMed  PubMed Central  Google Scholar 

  98. Potosky A, Legler J, Albertsen P, Stanford J, Gilliland F, Hamilton A, et al. Health outcomes after prostatectomy or radiotherapy for prostate cancer: results from the Prostate Cancer Outcomes Study. J Natl Cancer Inst. 2000;92(19):1582–92.

    Article  CAS  PubMed  Google Scholar 

  99. Kent EE, Malinoff R, Rozjabek HM, Ambs A, Clauser SB, Topor MA, et al. Revisiting the surveillance epidemiology and end results cancer registry and Medicare Health Outcomes Survey (SEER-MHOS) linked data resource for patient-reported outcomes research in older adults with cancer. J Am Geriatr Soc. 2016;64(1):186–92.

    Article  PubMed  Google Scholar 

  100. Alwhaibi M, Madhavan S, Bias T, Kelly K, Walkup J, Sambamoorthi U. Depression treatment among elderly Medicare beneficiaries with incident cases of cancer and newly diagnosed depression. Psychiatr Serv. 2017;68(5):482–9.

    Article  PubMed  Google Scholar 

  101. Mollica MA, Enewold LR, Lines LM, Halpern MT, Schumacher JR, Hays RD, et al. Examining colorectal cancer survivors' surveillance patterns and experiences of care: a SEER-CAHPS study. Cancer Causes Control. 2017;28(10):1133–41.

    Article  PubMed  Google Scholar 

  102. Chubak J, Ziebell R, Greenlee RT, Honda S, Hornbrook MC, Epstein M, et al. The Cancer Research Network: a platform for epidemiologic and health services research on cancer prevention, care, and outcomes in large, stable populations. Cancer Causes Control. 2016;27(11):1315–23.

    Article  PubMed  PubMed Central  Google Scholar 

  103. Nekhlyudov L, Greene SM, Chubak J, Rabin B, Tuzzio L, Rolnick S, et al. Cancer research network: using integrated healthcare delivery systems as platforms for cancer survivorship research. J Cancer Surviv. 2013;7(1):55–62.

    Article  PubMed  Google Scholar 

  104. Love S. Army of women 2017. Available: https://researchers.armyofwomen.org/forresearchers.

  105. American Cancer Society. Cancer survivors network 2017. Available: https://csn.cancer.org/.

  106. Schmidt JE, Beckjord E, Bovbjerg DH, Low CA, Posluszny DM, Lowery AE, et al. Prevalence of perceived cognitive dysfunction in survivors of a wide range of cancers: results from the 2010 LIVESTRONG survey. J Cancer Surviv. 2016;10(2):302–11.

    Article  PubMed  Google Scholar 

  107. Elena JW, Travis LB, Simonds NI, Ambrosone CB, Ballard-Barbash R, Bhatia S, et al. Leveraging epidemiology and clinical studies of cancer outcomes: recommendations and opportunities for translational research. J Natl Cancer Inst. 2013;105(2):85–94.

    Article  PubMed  Google Scholar 

  108. Lerro CC, Stein KD, Smith T, Virgo KS. A systematic review of large-scale surveys of cancer survivors conducted in North America, 2000-2011. J Cancer Surviv. 2012;6(2):115–45.

    Article  PubMed  Google Scholar 

  109. Holzner B, Kemmler G, Cella D, De Paoli C, Meraner V, Kopp M, et al. Normative data for functional assessment of cancer therapy – general scale and its use for the interpretation of quality of life scores in cancer survivors. Acta Oncol (Stockholm, Sweden). 2004;43(2):153–60.

    Article  Google Scholar 

  110. National Institutes of Health. Patient-Reported Outcomes Measurement Information System (PROMIS) 2007. Available from: https://commonfund.nih.gov/promis/index.

  111. Dueck AC, Mendoza TR, Mitchell SA, et al. Validity and reliability of the us national cancer institute’s patient-reported outcomes version of the common terminology criteria for adverse events (pro-ctcae). JAMA Oncol. 2015;1(8):1051–9.

    Article  PubMed  PubMed Central  Google Scholar 

  112. McCarty CA, Huggins W, Aiello AE, Bilder RM, Hariri A, Jernigan TL, et al. PhenX RISING: real world implementation and sharing of PhenX measures. BMC Med Genet. 2014;7:16.

    Google Scholar 

  113. Hurria A. Management of elderly patients with cancer. J Natl Compr Cancer Netw. 2013;11(5 Suppl):698–701.

    Article  Google Scholar 

  114. Blinder VS, Griggs JJ. Health disparities and the cancer survivor. Semin Oncol. 2013;40(6):796–803.

    Article  PubMed  Google Scholar 

  115. Griggs J, Maingi S, Blinder V, Denduluri N, Khorana AA, Norton L, et al. American Society of Clinical Oncology position statement: strategies for reducing cancer health disparities among sexual and gender minority populations. J Clin Oncol. 2017;35(19):2203–8.

    Article  PubMed  Google Scholar 

  116. Polite BN, Adams-Campbell LL, Brawley OW, Bickell N, Carethers JM, Flowers CR, et al. Charting the future of cancer health disparities research: a position statement from the American Association for Cancer Research, the American Cancer Society, the American Society of Clinical Oncology, and the National Cancer Institute. J Clin Oncol. 2017;35(26):3075–82.

    Article  PubMed  Google Scholar 

  117. National Alliance for Caregiving. AARP Caregiving in the U.S. 2015 2016 [cited 2016 June ]. Available from: http://www.caregiving.org/caregiving2015.

  118. Kent EE, Rowland JH, Northouse L, Litzelman K, Chou W-YS, Shelburne N, et al. Caring for caregivers and patients: research and clinical priorities for informal cancer caregiving. Cancer. 2016;122(13):1987–95.

    Article  PubMed  Google Scholar 

  119. Weaver KE, Rowland JH, Alfano CM, McNeel TS. Parental cancer and the family: a population-based estimate of the number of US cancer survivors residing with their minor children. Cancer. 2010;116(18):4395–401.

    Article  PubMed  Google Scholar 

  120. van Ryn M, Sanders S, Kahn K, van Houtven C, Griffin JM, Martin M, et al. Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue? Psycho-Oncology. 2011;20(1):44–52.

    Article  PubMed  PubMed Central  Google Scholar 

  121. de Moor JS, Dowling EC, Ekwueme DU, Guy GP, Rodriguez J, Virgo KS, et al. Employment implications of informal cancer caregiving. J Cancer Surviv. 2017;11(1):48–57.

    Article  PubMed  Google Scholar 

  122. Kim Y, Given BA. Quality of life of family caregivers of cancer survivors. Cancer. 2008;112(S11):2556–68.

    Article  PubMed  Google Scholar 

  123. Northouse L, Williams AL, Given B, McCorkle R. Psychosocial care for family caregivers of patients with cancer. J Clin Oncol. 2012;30(11):1227–34.

    Article  PubMed  Google Scholar 

  124. Litzelman K, Green PA, Yabroff KR. Cancer and quality of life in spousal dyads: spillover in couples with and without cancer-related health problems. Support Care Cancer. 2016;24(2):763–71.

    Article  PubMed  Google Scholar 

  125. Frambes D, Given B, Lehto R, Sikorskii A, Wyatt G. Informal caregivers of cancer patients: review of interventions, care activities, and outcomes. West J Nurs Res. 2017:193945917699364.

    Google Scholar 

  126. Kim Y, Spillers R. Quality of life of family caregivers at 2 years after a relative’s cancer diagnosis. Psychooncology. 2010;19:431–40.

    Article  PubMed  Google Scholar 

  127. Shaffer KM, Kim Y, Carver CS, Cannady RS. Depressive symptoms predict cancer caregivers' physical health decline. Cancer. 2017;123(21):4277–85.

    Article  PubMed  Google Scholar 

  128. Abrams J, Kramer B, Doroshow JH, Varmus H. National cancer institute–supported clinical trials networks. J Clin Oncol. 2015;33(3):293.

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Smith Center for Healing and the Arts, Washington, DC, USA

    Julia H. Rowland

  2. Division of Cancer Control & Population Sciences, National Cancer Institute, Bethesda, MD, USA

    Angela B. Mariotto & Joanne W. Elena

Authors
  1. Julia H. Rowland
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Angela B. Mariotto
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Joanne W. Elena
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Julia H. Rowland .

Editor information

Editors and Affiliations

  1. Professor (ret), Uniformed Services University Founder, Editor in Chief, Journal of Cancer Survivorship: Research and Practice, Bethesda, MD, USA

    Michael Feuerstein

  2. Department of Medicine, Brigham & Women’s Hospital, Perini Family Survivors’ Center, Dana-Farber Cancer Institute, Boston, MA, USA

    Larissa Nekhlyudov

Rights and permissions

Reprints and permissions

Copyright information

© 2018 Springer International Publishing AG, part of Springer Nature

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Rowland, J.H., Mariotto, A.B., Elena, J.W. (2018). Epidemiology. In: Feuerstein, M., Nekhlyudov, L. (eds) Handbook of Cancer Survivorship. Springer, Cham. https://doi.org/10.1007/978-3-319-77432-9_2

Download citation

  • DOI: https://doi.org/10.1007/978-3-319-77432-9_2

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-77430-5

  • Online ISBN: 978-3-319-77432-9

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation