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Journal of Cancer Survivorship

, Volume 8, Issue 2, pp 229–238 | Cite as

Perspectives of cancer survivors on the role of different healthcare providers in an integrated delivery system

  • Jessica Chubak
  • Erin J. Aiello Bowles
  • Leah Tuzzio
  • Evette Ludman
  • Carolyn M. Rutter
  • Robert J. Reid
  • Edward H. Wagner
Article

Abstract

Purpose

The purpose of this paper is to describe patient perspectives on survivorship care 1 year after cancer diagnosis.

Methods

The study was conducted at an integrated healthcare delivery system in western Washington State. Participants were patients with breast, colorectal, and lung cancer who had enrolled in a randomized control trial (RCT) of oncology nurse navigation to improve early cancer care. Those alive and enrolled in the healthcare system 1 year after diagnosis were eligible for this analysis. Participants completed surveys by phone. Questions focused on receipt of treatment summaries and care plans; discussions with different providers; patient opinions on who does and should provide their care; and patient perspectives primary care providers’ (PCP) knowledge and skills related to caring for cancer survivors

Results

Of the 251 participants in the RCT, 230 (91.6 %) responded to the 12-month phone survey and were included in this analysis; most (n = 183, 79.6 %) had breast cancer. The majority (84.8 %) considered their cancer specialist (e.g., medical, radiation, surgical or gynecological oncologist) to be their main provider for cancer follow-up and most (69.4 %) had discussed follow-up care with that provider. Approximately half of patients were uncertain how well their PCP communicated with the oncologist and how knowledgeable s/he was in caring for cancer survivors.

Conclusions

One year after diagnosis, cancer survivors continue to view cancer specialists as their main providers and are uncertain about their PCP’s skills and knowledge in managing their care. Our findings present an opportunity to help patients understand what their PCPs can and cannot provide in the way of cancer follow-up care.

Implications for cancer survivors

Additional research on care coordination and delivery is necessary to help cancer survivors manage their care between primary care and specialty providers.

Keywords

Cancer survivorship Shared care Navigation Primary care 

Notes

Acknowledgments

The authors thank the nurse navigators: Ellen Canfield, Lynn Flaherty, and Jennifer Min; and Kathryn Horner, Ruth McCorkle PhD, and Eric Chen MD for their leadership in developing the project and supporting the intervention; and Beth Kirlin and Janice Miyoshi for their administrative and data collection support.

Funding

This work was supported by the National Cancer Institute of the National Institutes of Health (grant number P20CA137219 to EHW). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The collection of cancer stage data used in this study was supported by the Cancer Surveillance System of the Fred Hutchinson Cancer Research Center, which is funded by Contract No. N01-CN-67009 and N01-PC-35142 from the Surveillance, Epidemiology and End Results (SEER) Program of the National Cancer Institute with additional support from the Fred Hutchinson Cancer Research Center and the State of Washington.

References

  1. 1.
    Institute of Medicine and National Research Council of the National Academies. From cancer patient to cancer survivor: lost in transition. Washington: The National Academies Press; 2005.Google Scholar
  2. 2.
    Earle CC, Ganz PA. Cancer survivorship care: don’t let the perfect be the enemy of the good. J Clin Oncol. 2012;30(30):3764–8. doi: 10.1200/JCO.2012.41.7667.CrossRefPubMedGoogle Scholar
  3. 3.
    Tessaro I, Campbell MK, Golden S, Gellin M, McCabe M, Syrjala K, et al. Process of diffusing cancer survivorship care into oncology practice. Transl Behav Med. 2013;3(2):142–8. doi: 10.1007/s13142-012-0145-4.PubMedCentralCrossRefPubMedGoogle Scholar
  4. 4.
    Kirsch B. Many US, cancer survivors still lost in transition. Lancet. 2012;379(9829):1865–6.CrossRefPubMedGoogle Scholar
  5. 5.
    Salz T, Oeffinger KC, McCabe MS, Layne TM, Bach PB. Survivorship care plans in research and practice. CA Cancer J Clin. 2012. doi: 10.3322/caac.20142.PubMedCentralPubMedGoogle Scholar
  6. 6.
    Sabatino SA, Thompson TD, Smith JL, Rowland JH, Forsythe LP, Pollack L, et al. Receipt of cancer treatment summaries and follow-up instructions among adult cancer survivors: results from a national survey. J Cancer Surviv. 2013;7(1):32–43. doi: 10.1007/s11764-012-0242-x.CrossRefPubMedGoogle Scholar
  7. 7.
    Faul LA, Rivers B, Shibata D, Townsend I, Cabrera P, Quinn GP, et al. Survivorship care planning in colorectal cancer: feedback from survivors & providers. J Psychosoc Oncol. 2012;30(2):198–216. doi: 10.1080/07347332.2011.651260.PubMedCentralCrossRefPubMedGoogle Scholar
  8. 8.
    Earle CC, Burstein HJ, Winer EP, Weeks JC. Quality of non-breast cancer health maintenance among elderly breast cancer survivors. J Clin Oncol. 2003;21(8):1447–51. doi: 10.1200/jco.2003.03.060.CrossRefPubMedGoogle Scholar
  9. 9.
    Snyder CF, Earle CC, Herbert RJ, Neville BA, Blackford AL, Frick KD. Preventive care for colorectal cancer survivors: a 5-year longitudinal study. J Clin Oncol. 2008;26(7):1073–9. doi: 10.1200/JCO.2007.11.9859.CrossRefPubMedGoogle Scholar
  10. 10.
    Snyder CF, Earle CC, Herbert RJ, Neville BA, Blackford AL, Frick KD. Trends in follow-up and preventive care for colorectal cancer survivors. J Gen Intern Med. 2008;23(3):254–9. doi: 10.1007/s11606-007-0497-5.PubMedCentralCrossRefPubMedGoogle Scholar
  11. 11.
    Oeffinger KC, McCabe MS. Models for delivering survivorship care. J Clin Oncol. 2006;24(32):5117–24. doi: 10.1200/JCO.2006.07.0474.CrossRefPubMedGoogle Scholar
  12. 12.
    Chubak J, Tuzzio L, Hsu C, Alfano CM, Rabin B, Hornbrook MC, et al. Providing care to cancer survivors in integrated healthcare delivery systems: practices, challenges and research opportunities. J Oncol Pract. 2012;8(3):184–9.PubMedCentralCrossRefPubMedGoogle Scholar
  13. 13.
    Klabunde CN, Han PK, Earle CC, Smith T, Ayanian JZ, Lee R, et al. Physician roles in the cancer-related follow-up care of cancer survivors. Fam Med. 2013;45(7):463–74.PubMedCentralPubMedGoogle Scholar
  14. 14.
    Cheung W, Aziz N, Noone A-M, Rowland J, Potosky A, Ayanian J, et al. Physician preferences and attitudes regarding different models of cancer survivorship care: a comparison of primary care providers and oncologists. J Cancer Surviv. 2013;7(3):343–54. doi: 10.1007/s11764-013-0281-y.CrossRefPubMedGoogle Scholar
  15. 15.
    Reid RJ, Coleman K, Johnson EA, Fishman PA, Hsu C, Soman MP, et al. The group health medical home at year two: cost savings, higher patient satisfaction, and less burnout for providers. Health Aff. 2010;29(5):835–43. doi: 10.1377/hlthaff.2010.0158.CrossRefGoogle Scholar
  16. 16.
    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. doi: 10.1007/s11764-012-0244-8.CrossRefPubMedGoogle Scholar
  17. 17.
    Horner K, Ludman EJ, McCorkle R, Canfield E, Flaherty L, Min J, et al. An oncology nurse navigator program designed to eliminate gaps in early cancer care. Clin J Oncol Nurs. 2013;17(1):43–8. doi: 10.1188/13.CJON.43-48.CrossRefPubMedGoogle Scholar
  18. 18.
    Wagner EH, Ludman EJ, Aiello Bowles EJ, Penfold R, Reid RJ, Rutter CM et al. Nurse navigators in early cancer care: a randomized, controlled trial. J Clin Oncol. 2013; doi:10.1200/jco.2013.51.7359Google Scholar
  19. 19.
    Mao JJ, Bowman MA, Stricker CT, DeMichele A, Jacobs L, Chan D, et al. Delivery of survivorship care by primary care physicians: the perspective of breast cancer patients. J Clin Oncol. 2009;27(6):933–8. doi: 10.1200/JCO.2008.18.0679.CrossRefPubMedGoogle Scholar
  20. 20.
    Kent EE, Arora NK, Rowland JH, Bellizzi KM, Forsythe LP, Hamilton AS, et al. Health information needs and health-related quality of life in a diverse population of long-term cancer survivors. Patient Educ Couns. 2012;89(2):345–52. doi: 10.1016/j.pec.2012.08.014.PubMedCentralCrossRefPubMedGoogle Scholar
  21. 21.
    Cheung WY, Neville BA, Cameron DB, Cook EF, Earle CC. Comparisons of patient and physician expectations for cancer survivorship care. J Clin Oncol. 2009;27(15):2489–95. doi: 10.1200/JCO.2008.20.3232.CrossRefPubMedGoogle Scholar
  22. 22.
    Cheung WY, Neville BA, Earle CC. Associations among cancer survivorship discussions, patient and physician expectations, and receipt of follow-up care. J Clin Oncol. 2010. doi: 10.1200/JCO.2009.26.4549.Google Scholar
  23. 23.
    Mayer EL, Gropper AB, Neville BA, Partridge AH, Cameron DB, Winer EP, et al. Breast cancer survivors’ perceptions of survivorship care options. J Clin Oncol. 2012;30(2):158–63. doi: 10.1200/JCO.2011.36.9264.CrossRefPubMedGoogle Scholar
  24. 24.
    Hudson SV, Miller SM, Hemler J, Ferrante JM, Lyle J, Oeffinger KC, et al. Adult cancer survivors discuss follow-up in primary care: ‘Not what I want, but maybe what I need’. Ann Fam Med. 2012;10(5):418–27. doi: 10.1370/afm.1379.PubMedCentralCrossRefPubMedGoogle Scholar
  25. 25.
    Howell D, Hack TF, Oliver TK, Chulak T, Mayo S, Aubin M, et al. Models of care for post-treatment follow-up of adult cancer survivors: a systematic review and quality appraisal of the evidence. J Cancer Surviv. 2012. doi: 10.1007/s11764-012-0232-z.PubMedGoogle Scholar
  26. 26.
    Snyder CF, Frick KD, Kantsiper ME, Peairs KS, Herbert RJ, Blackford AL, et al. Prevention, screening, and surveillance care for breast cancer survivors compared with controls: changes from 1998 to 2002. J Clin Oncol. 2009;27(7):1054–61. doi: 10.1200/JCO.2008.18.0950.CrossRefPubMedGoogle Scholar
  27. 27.
    Snyder CF, Frick KD, Peairs KS, Kantsiper ME, Herbert RJ, Blackford AL, et al. Comparing care for breast cancer survivors to non-cancer controls: a five-year longitudinal study. J Gen Intern Med. 2009;24(4):469–74. doi: 10.1007/s11606-009-0903-2.PubMedCentralCrossRefPubMedGoogle Scholar
  28. 28.
    Foy R, Hempel S, Rubenstein L, Suttorp M, Seelig M, Shanman R, et al. Meta-analysis: effect of interactive communication between collaborating primary care physicians and specialists. Ann Intern Med. 2010;152(4):247–58. doi: 10.7326/0003-4819-152-4-201002160-00010.CrossRefPubMedGoogle Scholar
  29. 29.
    Potosky AL, Han PK, Rowland J, Klabunde CN, Smith T, Aziz N, et al. Differences between primary care physicians’ and oncologists’ knowledge, attitudes and practices regarding the care of cancer survivors. J Gen Intern Med. 2011;26(12):1403–10. doi: 10.1007/s11606-011-1808-4.PubMedCentralCrossRefPubMedGoogle Scholar
  30. 30.
    Kantsiper M, McDonald EL, Geller G, Shockney L, Snyder C, Wolff AC. Transitioning to breast cancer survivorship: perspectives of patients, cancer specialists, and primary care providers. J Gen Intern Med. 2009;24 Suppl 2:S459–66. doi: 10.1007/s11606-009-1000-2.CrossRefPubMedGoogle Scholar
  31. 31.
    Virgo KS, Lerro CC, Klabunde CN, Earle C, Ganz PA. Barriers to breast and colorectal cancer survivorship care: perceptions of primary care physicians and medical oncologists in the United States. J Clin Oncol. 2013;31(18):2322–36. doi: 10.1200/JCO.2012.45.6954.PubMedCentralCrossRefPubMedGoogle Scholar
  32. 32.
    Bober SL, Recklitis CJ, Campbell EG, Park ER, Kutner JS, Najita JS, et al. Caring for cancer survivors: a survey of primary care physicians. Cancer. 2009;115(18 Suppl):4409–18. doi: 10.1002/cncr.24590.CrossRefPubMedGoogle Scholar
  33. 33.
    Skolarus TA, Holmes-Rovner M, Northouse LL, Fagerlin A, Garlinghouse C, Demers RY, et al. Primary care perspectives on prostate cancer survivorship: Implications for improving quality of care. Urol Oncol: Sem Orig Investig. 2013;31(6):727–32. doi: 10.1016/j.urolonc.2011.06.002.CrossRefGoogle Scholar
  34. 34.
    Del Giudice ME, Grunfeld E, Harvey BJ, Piliotis E, Verma S. Primary care physicians’ views of routine follow-up care of cancer survivors. J Clin Oncol. 2009:JCO.2008.20.4883. doi: 10.1200/jco.2008.20.4883.

Copyright information

© Springer Science+Business Media New York 2013

Authors and Affiliations

  • Jessica Chubak
    • 1
    • 2
  • Erin J. Aiello Bowles
    • 1
  • Leah Tuzzio
    • 1
  • Evette Ludman
    • 1
  • Carolyn M. Rutter
    • 1
    • 3
    • 4
  • Robert J. Reid
    • 1
    • 4
  • Edward H. Wagner
    • 1
  1. 1.Group Health Research InstituteSeattleUSA
  2. 2.Department of EpidemiologyUniversity of WashingtonSeattleUSA
  3. 3.Department of BiostatisticsUniversity of WashingtonSeattleUSA
  4. 4.Department of Health ServicesUniversity of WashingtonSeattleUSA

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