Journal of Cancer Education

, Volume 33, Issue 6, pp 1181–1188 | Cite as

Cancer Survivors’ Reported Discussions with Health Care Providers About Follow-Up Care and Receipt of Written Care Plans

  • Sarah C. ReedEmail author
  • Rod Walker
  • Rebecca Ziebell
  • Borsika Rabin
  • Stephanie Nutt
  • Jessica Chubak
  • Larissa Nekhlyudov


Prior studies reveal gaps in cancer survivors’ discussions with health care providers about follow-up care and receipt of care plans; however, whether survivorship care planning may vary by cancer type is not known. We surveyed 615 survivors of breast, colorectal, prostate, lung cancer, and melanoma enrolled in three health plans to examine cancer survivors’ self-reported discussions of follow-up care, including the need for surveillance, late and long-term effects, emotional needs, and health behaviors. We assessed whether cancer survivors received a written treatment summary and post-treatment care instructions. Most (92%) survivors reported having a discussion about the need for surveillance; 75%, late and long-term effects; 69%, lifestyle and health behaviors; and 53%, emotional and social needs. Most (88%) reported receiving post-treatment care instructions and 47%, a treatment summary. While there was little difference among survivors’ receipt of surveillance or health behavior recommendations by cancer type (p = 0.85 and p = 0.66, respectively), discussions of late and long-term effects occurred among 82% of prostate, 78% of breast, 73% of melanoma, 72% of colorectal, and 67% of lung survivors (p = 0.06). Approximately half of survivors reported discussions of emotional needs, with modest differences by cancer type (p = 0.08). Our findings indicate that most patient-provider discussions cover information on surveillance, with less emphasis on late and long-term effects, lifestyle and health behaviors, and substantially less focusing on emotional and social needs. No or modest differences in discussions occurred by cancer type. Whether tailoring information to individual cancer survivor needs is beneficial should be examined.


Cancer survivorship Patient-provider communication 


Compliance with Ethical Standards

Conflict of Interest

Rod Walker has received funding as a biostatistician from research grants awarded to GHRI from Pfizer. All other authors have no financial or other relationships that could result in a conflict of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.


  1. 1.
    American Cancer Society (2014) Cancer treatment and survivorship facts & figures 2014–2015. American Cancer Society, AtlantaGoogle Scholar
  2. 2.
    Ballard-Barbash R, Friedenreich CM, Courneya KS, Siddiqi SM, McTiernan A, Alfano CM (2012) Physical activity, biomarkers, and disease outcomes in cancer survivors: a systematic review. J Natl Cancer Inst 104(11):815–840. doi: 10.1093/jnci/djs207 CrossRefPubMedPubMedCentralGoogle Scholar
  3. 3.
    Birken SA, Deal AM, Mayer DK, Weiner BJ (2014) Determinants of survivorship care plan use in US cancer programs. J Cancer Educ 29(4):720–727. doi: 10.1007/s13187-014-0645-7 CrossRefPubMedPubMedCentralGoogle Scholar
  4. 4.
    Birken SA, Mayer DK, Weiner BJ (2013) Survivorship care plans: prevalence and barriers to use. J Cancer Educ 28(2):290–296. doi: 10.1007/s13187-013-0469-x CrossRefPubMedPubMedCentralGoogle Scholar
  5. 5.
    Blanch-Hartigan D, Forsythe LP, Alfano CM, Smith T, Nekhlyudov L, Ganz PA, Rowland JH (2014) Provision and discussion of survivorship care plans among cancer survivors: results of a nationally representative survey of oncologists and primary care physicians. J Clin Oncol 32(15):1578–1585. doi: 10.1200/jco.2013.51.7540 CrossRefPubMedPubMedCentralGoogle Scholar
  6. 6.
    Boyajian RN, Grose A, Grenon N, Roper K, Sommer K, Walsh M, Snavely A, Neary S, Partridge A, Nekhlyudov L (2014) Desired elements and timing of cancer survivorship care: one approach may not fit all. J Oncol Pract. doi: 10.1200/jop.2013.001192
  7. 7.
    Brennan ME, Gormally JF, Butow P, Boyle FM, Spillane AJ (2014) Survivorship care plans in cancer: a systematic review of care plan outcomes. Brit J Cancer 111(10):1899–1908. doi: 10.1038/bjc.2014.505 CrossRefPubMedGoogle Scholar
  8. 8.
    Canzona MR, Garcia D, Fisher CL, Raleigh M, Kalish V, Ledford CJ (2016) Communication about sexual health with breast cancer survivors: variation among patient and provider perspectives. Patient Educ Couns 99(11):1814–1820. doi: 10.1016/j.pec.2016.06.019 CrossRefPubMedGoogle Scholar
  9. 9.
    Chawla N, Blanch-Hartigan D, Virgo KS, Ekwueme DU, Han X, Forsythe L, Rodriguez J, McNeel TS, Yabroff KR (2016) Quality of patient-provider communication among cancer survivors: findings from a nationally representative sample. J Oncol Pract. doi: 10.1200/JOP.2015.006999
  10. 10.
    Cheung WY, Neville BA, Earle CC (2010) Associations among cancer survivorship discussions, patient and physician expectations, and receipt of follow-up care. J Clin Oncol 28(15):2577–2583. doi: 10.1200/jco.2009.26.4549 CrossRefPubMedGoogle Scholar
  11. 11.
    Clayton MF, Dudley WN (2009) Patient-centered communication during oncology follow-up visits for breast cancer survivors: content and temporal structure. Oncol Nurs Forum 36(2):E68–E79. doi: 10.1188/09.onf. e68-e79 CrossRefPubMedGoogle Scholar
  12. 12.
    Commission on Cancer (2012) Version, 1.2.1: cancer program standards 2012: ensuring patient-centered care. American College of Surgeons, ChicagoGoogle Scholar
  13. 13.
    Earle CC (2006) Failing to plan is planning to fail: improving the quality of care with survivorship care plans. J Clin Oncol 24(32):5112–5116. doi: 10.1200/jco.2006.06.5284 CrossRefPubMedGoogle Scholar
  14. 14.
    Earle CC, Ganz PA (2012) Cancer survivorship care: don’t let the perfect be the enemy of the good. J Clin Oncol 30(30):3764–3768. doi: 10.1200/jco.2012.41.7667 CrossRefPubMedGoogle Scholar
  15. 15.
    Fletcher C, Flight I, Chapman J, Fennell K, Wilson C (2016) The information needs of adult cancer survivors across the cancer continuum: a scoping review. Patient Educ Couns. doi: 10.1016/j.pec.2016.10.008
  16. 16.
    Flynn KE, Reese JB, Jeffery DD, Abernethy AP, Lin L, Shelby RA, Porter LS, Dombeck CB, Weinfurt KP (2012) Patient experiences with communication about sex during and after treatment for cancer. Psycho-Oncology 21(6):594–601. doi: 10.1002/pon.1947 CrossRefPubMedGoogle Scholar
  17. 17.
    Forsythe LP, Parry C, Alfano CM, Kent EE, Leach CR, Haggstrom DA, Ganz PA, Aziz N, Rowland JH (2013) Use of survivorship care plans in the United States: associations with survivorship care. J Natl Cancer Inst 105(20):1579–1587. doi: 10.1093/jnci/djt258 CrossRefPubMedPubMedCentralGoogle Scholar
  18. 18.
    Grunfeld E, Julian JA, Pond G, Maunsell E, Coyle D, Folkes A, Joy AA et al (2011) Evaluating survivorship care plans: results of a randomized, clinical trial of patients with breast cancer. J Clin Oncol 29(36):4755–4762. doi: 10.1200/jco.2011.36.8373 CrossRefPubMedGoogle Scholar
  19. 19.
    Hewitt M, Greenfield S, Stovall E (2006) From cancer patient to cancer survivor: lost in transition. The National Academies Press, Washington, DCGoogle Scholar
  20. 20.
    Institute of Medicine (2013) Delivering high-quality cancer care: charting a new course for a system in crisis, report brief. Institute of Medicine of the National Academies, Washington, DCGoogle Scholar
  21. 21.
    Institute of Medicine Committee on Psychosocial Services to Cancer Patients/Families in a Community, Setting (2008) The National Academies Collection: reports funded by National Institutes of Health. In: Adler NE, Page AEK (eds) Cancer care for the whole patient: meeting psychosocial health needs. National Academies Press (US) National Academy of Sciences, Washington (DC)Google Scholar
  22. 22.
    Jabson JM, Bowen DJ (2013) Cancer treatment summaries and follow-up care instructions: which cancer survivors receive them? Cancer Causes Control 24(5):861–871. doi: 10.1007/s10552-013-0163-7 CrossRefPubMedGoogle Scholar
  23. 23.
    Jones SM, Ziebell R, Walker R, Nekhlyudov L, Rabin BA, Nutt S, Fujii M, Chubak J (2016) Psychometric investigation of benefit finding among long-term cancer survivors using the Medical Expenditure Panel Survey. Eur J Oncol Nurs 20:31–35. doi: 10.1016/j.ejon.2015.07.005 CrossRefPubMedGoogle Scholar
  24. 24.
    Keesing S, McNamara B, Rosenwax L (2015) Cancer survivors’ experiences of using survivorship care plans: a systematic review of qualitative studies. J Cancer Surviv 9(2):260–268. doi: 10.1007/s11764-014-0407-x CrossRefPubMedGoogle Scholar
  25. 25.
    Kenzik K, Pisu M, Fouad MN, Martin MY (2015) Are long-term cancer survivors and physicians discussing health promotion and healthy behaviors? J Cancer Surviv 10(2):271–279. doi: 10.1007/s11764-015-0473-8 CrossRefPubMedPubMedCentralGoogle Scholar
  26. 26.
    Mayer DK, Gerstel A, Walton AL, Triglianos T, Sadiq TE, Hawkins NA, Davies JM (2014) Implementing survivorship care plans for colon cancer survivors. Oncol Nurs Forum 41(3):266–273. doi: 10.1188/14.onf.266-273 CrossRefPubMedPubMedCentralGoogle Scholar
  27. 27.
    Mayer DK, Nekhlyudov L, Snyder CF, Merrill JK, Wollins DS, Shulman LN (2014) American Society of Clinical Oncology clinical expert statement on cancer survivorship care planning. J Oncol Pract. doi: 10.1200/jop.2014.001321
  28. 28.
    Nekhlyudov L, Walker R, Ziebell R, Rabin B, Nutt S, Chubak J (2016) Cancer survivors’ experiences with insurance, finances, and employment: results from a multisite study. J Cancer Surviv. doi: 10.1007/s11764-016-0554-3
  29. 29.
    Peterson EB, Ostroff JS, DuHamel KN, D’Agostino TA, Hernandez M, Canzona MR, Bylund CL (2016) Impact of provider-patient communication on cancer screening adherence: a systematic review. Prev Med 93:96–105. doi: 10.1016/j.ypmed.2016.09.034 CrossRefPubMedPubMedCentralGoogle Scholar
  30. 30.
    Rechis R, Beckjord EB, Nutt S (2014) Potential benefits of treatment summaries for survivors’ health and information needs: results from a LIVESTRONG survey. J Oncol Pract 10(1):75–78. doi: 10.1200/JOP.2013.000973 CrossRefPubMedGoogle Scholar
  31. 31.
    Royak-Schaler R, Passmore SR, Gadalla S, Hoy MK, Zhan M, Tkaczuk K, Harper LM, Nicholson PD, Hutchison AP (2008) Exploring patient-physician communication in breast cancer care for African American women following primary treatment. Oncol Nurs Forum 35(5):836–843. doi: 10.1188/08.onf.836-843 CrossRefPubMedGoogle Scholar
  32. 32.
    Rutledge L, Demark-Wahnefried W (2016) Weight management and exercise for the cancer survivor. Clin J Oncol Nurs 20(2):129–132. doi: 10.1188/16.CJON.129-132 CrossRefPubMedPubMedCentralGoogle Scholar
  33. 33.
    Sabatino SA, Thompson TD, Smith JL, Rowland JH, Forsythe LP, Pollack L, Hawkins NA (2013) Receipt of cancer treatment summaries and follow-up instructions among adult cancer survivors: results from a national survey. J Cancer Surviv 7(1):32–43. doi: 10.1007/s11764-012-0242-x CrossRefPubMedGoogle Scholar
  34. 34.
    Sabiston CM, Brunet J (2012) Reviewing the benefits of physical activity during cancer survivorship. Am J Lifestyle Med 6(2):167–177. doi: 10.1177/1559827611407023 CrossRefGoogle Scholar
  35. 35.
    Simmons VN, Litvin EB, Patel RD, Jacobsen PB, McCaffrey JC, Bepler G, Quinn GP, Brandon TH (2009) Patient-provider communication and perspectives on smoking cessation and relapse in the oncology setting. Patient Educ Couns 77(3):398–403. doi: 10.1016/j.pec.2009.09.024 CrossRefPubMedPubMedCentralGoogle Scholar
  36. 36.
    Soni A (2014) Experiences with health care providers among cancer survivors, US Civiian Noninstitutionalized Populaiton, 2011. In: Statistical brief #451. Agency for Healthcare Research and Quality, RockvilleGoogle Scholar
  37. 37.
    Stricker CT, Jacobs LA, Risendal B, Jones A, Panzer S, Ganz PA, Syrjala KL et al (2011) Survivorship care planning after the institute of medicine recommendations: how are we faring? J Cancer Surviv 5(4):358–370. doi: 10.1007/s11764-011-0196-4 CrossRefPubMedPubMedCentralGoogle Scholar
  38. 38.
    Stricker CT, O’Brien M (2014) Implementing the commission on cancer standards for survivorship care plans. Clin J Oncol Nurs 18(Suppl):15–22. doi: 10.1188/14.cjon.s1.15-22 CrossRefPubMedGoogle Scholar
  39. 39.
    Thorne SE, Hislop TG, Armstrong EA, Oglov V (2008) Cancer care communication: the power to harm and the power to heal? Patient Educ Couns 71(1):34–40. doi: 10.1016/j.pec.2007.11.010 CrossRefPubMedGoogle Scholar
  40. 40.
    Thorne SE, Stajduhar KI (2012) Patient perceptions of communications on the threshold of cancer survivorship: implications for provider responses. J Cancer Surviv 6(2):229–237. doi: 10.1007/s11764-012-0216-z CrossRefPubMedGoogle Scholar
  41. 41.
    Yabroff KR, Dowling E, Rodriguez J, Ekwueme DU, Meissner H, Soni A, Lerro C et al (2012) The Medical Expenditure Panel Survey (MEPS) experiences with cancer survivorship supplement. J Cancer Surviv 6(4):407–419. doi: 10.1007/s11764-012-0221-2 CrossRefPubMedGoogle Scholar
  42. 42.
    Zabora JR, Bolte S, Brethwaite D, Weller S, Friedman C (2015) The challenges of the integration of cancer survivorship care plans with electronic medical records. Semin Oncol Nurs 31(1):73–78. doi: 10.1016/j.soncn.2014.12.001 CrossRefPubMedGoogle Scholar

Copyright information

© American Association for Cancer Education 2017

Authors and Affiliations

  • Sarah C. Reed
    • 1
    Email author
  • Rod Walker
    • 2
  • Rebecca Ziebell
    • 2
  • Borsika Rabin
    • 3
  • Stephanie Nutt
    • 4
  • Jessica Chubak
    • 2
  • Larissa Nekhlyudov
    • 5
  1. 1.Jane Addams College of Social WorkUniversity of Illinois at ChicagoChicagoUSA
  2. 2.Kaiser Permanente Health Research InstituteSeattleUSA
  3. 3.Department of Family Medicine and Public HealthUniversity of California San DiegoLa JollaUSA
  4. 4.Dell Medical SchoolUniversity of TexasAustinUSA
  5. 5.Department of Population Medicine, Harvard Medical School and Department of MedicineBrigham and Women’s HospitalBostonUSA

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