Follow-up care of cancer survivors: challenges and solutions

The Lancet Oncology

Volumn 18, Issue 1, 2017, Pages e19-e29

  Jacobs, Linda A ^a   Shulman, Lawrence N ^a  

^a UNIVERSITY OF PENNSYLVANIA   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ANTINEOPLASTIC AGENT;

BONE MARROW TRANSPLANTATION; CANCER CHEMOTHERAPY; CANCER DIAGNOSIS; CANCER PATIENT; CANCER RADIOTHERAPY; CANCER SURVIVAL; CANCER SURVIVOR; CHRONIC DISEASE; CLINICAL PATHWAY; DIAGNOSTIC TEST; EVIDENCE BASED MEDICINE; FOLLOW UP; HEALTH CARE COST; HEALTH CARE DELIVERY; HEALTH CARE NEED; HEALTH CARE PERSONNEL; HUMAN; LONG TERM CARE; MALIGNANT NEOPLASM; PATIENT CARE; PATIENT CARE PLANNING; PATIENT MONITORING; PERSONNEL SHORTAGE; PRACTICE GUIDELINE; PRIORITY JOURNAL; PSYCHOSOCIAL DISORDER; QUALITY OF LIFE; REVIEW; RISK MANAGEMENT; SELF CARE; STATISTICAL MODEL; STEM CELL TRANSPLANTATION; UNITED STATES; ADULT; AFTERCARE; HEALTH CARE QUALITY; NEOPLASMS; STANDARDS; SURVIVOR;

ADULT; AFTERCARE; CONTINUITY OF PATIENT CARE; HUMANS; NEOPLASMS; QUALITY OF HEALTH CARE; SURVIVORS;

EID: 85007454190     PISSN: 14702045     EISSN: 14745488     Source Type: Journal    
DOI: 10.1016/S1470-2045(16)30386-2     Document Type: Review

References (96)

1. 1 The National Coalition for Cancer Survivorship. History of the National Coalition for Cancer Survivorship. 1995–2011. http://www.canceradvocacy.org/about-us/our-history/ (accessed May 4, 2016).
2. 2 Hewitt, M, Greenfield, S, Stovall, E, From cancer patient to cancer survivor: lost in transition, 2005, National Academies Press, Washington, DC, USA.
3. 3 Mullan, F, Seasons of survival: reflections of a physician with cancer. N Engl J Med 313 (1985), 270–273.
4. 4 Welch-McCaffrey, D, Hoffman, B, Leigh, SA, Loescher, LJ, Meyskens, FL Jr, Surviving adult cancers. Part 2: psychosocial implications. Ann Intern Med 111 (1989), 517–524.
5. 5 Loescher, LJ, Welch-McCaffrey, D, Leigh, SA, Hoffman, B, Meyskens, FL Jr, Surviving adult cancers. Part 1: physiologic effects. Ann Intern Med 111 (1989), 411–432.
6. 6 Leigh, S, Logan, C, The cancer survivorship movement. Cancer Invest 9 (1991), 571–579.
7. 7 Ligibel, JA, Denlinger, CS, New NCCN guidelines for survivorship care. J Natl Compr Canc Netw 11:suppl 5 (2013), 640–644.
8. 8 Mayer, DK, Shapiro, CL, Jacobson, P, McCabe, MS, Assuring quality cancer survivorship care: we've only just begun. Am Soc Clin Oncol Educ Book, 2015, e583–e591.
9. 9 Irwin, M, Klemp, JR, Glennon, C, Frazier, LM, Oncology nurses' perspectives on the state of cancer survivorship care: current practice and barriers to implementation. Oncol Nurs Forum 38 (2011), e11–e19.
10. 10 American Cancer Society. Survivorship care plans. http://www.cancer.org/treatment/survivorshipduringandaftertreatment/survivorshipcareplans/index, 2016 (accessed accessed May 4, 2016).
11. 11 Commission on Cancer. Cancer program standards 2012: ensuring patient-centered care, 2012, American College of Surgeons, Chicago.
12. 12 Mariotto, AB, Yabroff, KR, Shao, Y, Feuer, EJ, Brown, ML, Projections of the cost of cancer care in the United States: 2010–2020. J Natl Cancer Inst 103 (2011), 117–128.
13. 13 McCabe, MS, Bhatia, S, Oeffinger, KC, et al. American Society of Clinical Oncology statement: achieving high-quality cancer survivorship care. J Clin Oncol 31 (2013), 631–640.
14. 14 Burg, MA, Adorno, G, Lopez, ED, et al. Current unmet needs of cancer survivors: analysis of open-ended responses to the American Cancer Society Study of Cancer Survivors II. Cancer 121 (2015), 623–630.
15. 15 Palmer, S, DeMichele, A, Schapira, M, et al. Symptoms, unmet need, and quality of life among recent breast cancer survivors. JCSO 14 (2016), 2–9.
16. 16 Mayer, DK, Nasso, SF, Earp, JA, Defining cancer survivors, their needs, and perspectives on survivorship health care in the USA. Lancet Oncol 18 (2016), e11–e18.
17. 17 Boyajian, RN, Grose, A, Grenon, N, et al. Desired elements and timing of cancer survivorship care: one approach may not fit all. J Oncol Pract 10 (2014), e293–e298.
18. 18 Lavoie Smith, EM, Skalla, K, Li, Z, et al. Assessing cancer survivors' needs using web-based technology: a pilot study. Comput Inform Nurs 30 (2012), 71–81.
19. 19 Stewart, DE, Physical symptoms of depression: unmet needs in special populations. J Clin Psychiatry 64:suppl 7 (2003), 12–16.
20. 20 Sanson-Fisher, R, Girgis, A, Boyes, A, Bonevski, B, Burton, L, Cook, P, The unmet supportive care needs of patients with cancer. Supportive Care Review Group. Cancer 88 (2000), 226–237.
21. 21 Ream, E, Quennell, A, Fincham, L, et al. Supportive care needs of men living with prostate cancer in England: a survey. Br J Cancer 98 (2008), 1903–1909.
22. 22 Koopman, C, Angell, K, Turner-Cobb, JM, et al. Distress, coping, and social support among rural women recently diagnosed with primary breast cancer. Breast J 7 (2001), 25–33.
23. 23 Hodgkinson, K, Butow, P, Hunt, GE, et al. The development and evaluation of a measure to assess cancer survivors' unmet supportive care needs: the CaSUN (Cancer Survivors' Unmet Needs measure). Psychooncology 16 (2007), 796–804.
24. 24 Degner, LF, Kristjanson, LJ, Bowman, D, et al. Information needs and decisional preferences in women with breast cancer. JAMA 277 (1997), 1485–1492.
25. 25 Jacobs, LA, Vaughn, DJ, In the clinic. Care of the adult cancer survivor. Ann Intern Med, 158, 2013, ITC6-1.
26. 26 Oeffinger, KC, McCabe, MS, Models for delivering survivorship care. J Clin Oncol 24 (2006), 5117–5124.
27. 27 McCabe, MS, Partridge, AH, Grunfeld, E, Hudson, MM, Risk-based health care, the cancer survivor, the oncologist, and the primary care physician. Semin Oncol 40 (2013), 804–812.
28. 28 Salz, T, Baxi, SS, Raghunathan, N, et al. Are we ready to predict late effects? A systematic review of clinically useful prediction models. Eur J Cancer 51 (2015), 758–766.
29. 29 Adams, SG, Smith, PK, Allan, PF, Anzueto, A, Pugh, JA, Cornell, JE, Systematic review of the chronic care model in chronic obstructive pulmonary disease prevention and management. Arch Intern Med 167 (2007), 551–561.
30. 30 Bodenheimer, T, Primary care—will it survive?. N Engl J Med 355 (2006), 861–864.
31. 31 Coleman, K, Austin, BT, Brach, C, Wagner, EH, Evidence on the chronic care model in the new millennium. Health Aff 28 (2009), 75–85.
32. 32 Bodenheimer, T, Wagner, EH, Grumbach, K, Improving primary care for patients with chronic illness: the chronic care model, part 2. JAMA 288 (2002), 1909–1914.
33. 33 Katon, W, Von Korff, M, Lin, E, Simon, G, Rethinking practitioner roles in chronic illness: the specialist, primary care physician, and the practice nurse. Gen Hosp Psychiatry 23 (2001), 138–144.
34. 34 Kvale, EA, Huang, CS, Meneses, KM, et al. Patient-centered support in the survivorship care transition: outcomes from the patient-owned survivorship care plan intervention. Cancer 122 (2016), 3232–3242.
35. 35 McCorkle, R, Ercolano, E, Lazenby, M, et al. Self-management: enabling and empowering patients living with cancer as a chronic illness. CA Cancer J Clin 61 (2011), 50–62.
36. 36 Lawrence, RA, McLoone, JK, Wakefield, CE, Cohn, RJ, Primary care physicians' perspectives of their role in cancer care: a systematic review. J Gen Intern Med 31 (2016), 1222–1236.
37. 37 Nyarko, E, Metz, JM, Nguyen, GT, Hampshire, MK, Jacobs, LA, Mao, JJ, Cancer survivors' perspectives on delivery of survivorship care by primary care physicians: an internet-based survey. BMC Fam Pract, 16, 2015, 143.
38. 38 Mao, JJ, Bowman, MA, Stricker, CT, et al. Delivery of survivorship care by primary care physicians: the perspective of breast cancer patients. J Clin Oncol 27 (2009), 933–938.
39. 39 Trotter, K, Schneider, SM, Turner, BS, Group appointments in a breast cancer survivorship clinic. J Adv Pract Oncol 4 (2013), 423–431.
40. 40 University of Colorado Cancer Center. Care for cancer survivors. http://www.ucdenver.edu/academics/colleges/medicalschool/centers/cancercenter/cancercare/survivors/Pages/survivors.aspx, 2016 (accessed May 4, 2016).
41. 41 Hudson, SV, Chubak, J, Coups, EJ, et al. Identifying key questions to advance research and practice in cancer survivorship follow-up care: a report from the ASPO Survivorship Interest Group. Cancer Epidemiol Biomarkers Prev 18 (2009), 2152–2154.
42. 42 Earle, CC, Long term care planning for cancer survivors: a health services research agenda. J Cancer Surviv 1 (2007), 64–74.
43. 43 Aziz, NM, Cancer survivorship research: state of knowledge, challenges and opportunities. Acta Oncol 46 (2007), 417–432.
44. 44 Chubak, J, Tuzzio, L, Hsu, C, et al. Providing care for cancer survivors in integrated health care delivery systems: practices, challenges, and research opportunities. J Oncol Pract 8 (2012), 184–189.
45. 45 Klabunde, CN, Han, PK, Earle, CC, et al. Physician roles in the cancer-related follow-up care of cancer survivors. Fam Med 45 (2013), 463–474.
46. 46 Khan, NF, Ward, A, Watson, E, Austoker, J, Rose, PW, Long-term survivors of adult cancers and uptake of primary health services: a systematic review. Eur J Cancer 44 (2008), 195–204.
47. 47 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 26 (2008), 1073–1079.
48. 48 Earle, CC, Neville, BA, Under use of necessary care among cancer survivors. Cancer 101 (2004), 1712–1719.
49. 49 Dawes, AJ, Hemmelgarn, M, Nguyen, DK, et al. Are primary care providers prepared to care for survivors of breast cancer in the safety net?. Cancer 121 (2015), 1249–1256.
50. 50 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 23 (2008), 254–259.
51. 51 Haggstrom, DA, Arora, NK, Helft, P, Clayman, ML, Oakley-Girvan, I, Follow-up care delivery among colorectal cancer survivors most often seen by primary and subspecialty care physicians. J Gen Intern Med 24:suppl 2 (2009), S472–S479.
52. 52 Snyder, CF, Frick, KD, Kantsiper, ME, et al. Prevention, screening, and surveillance care for breast cancer survivors compared with controls: changes from 1998 to 2002. J Clin Oncol 27 (2009), 1054–1061.
53. 53 Potosky, AL, Han, PK, Rowland, J, et al. Differences between primary care physicians' and oncologists' knowledge, attitudes and practices regarding the care of cancer survivors. J Gen Intern Med 26 (2011), 1403–1410.
54. 54 Feinberg, BA, Lang, J, Grzegorczyk, J, et al. Implementation of cancer clinical care pathways: a successful model of collaboration between payers and providers. J Oncol Pract 8:suppl 3 (2012), e38s–e43s.
55. 55 Nelson, L, Lesson's from Medicare's demonstration projects on disease management, care coordination, and value-based payment, 2012, Congressional Budget Office, Health and Human Resources Division, Washington, DC, USA.
56. 56 Rauh, SS, Wadsworth, EB, Weeks, WB, Weinstein, JN, The savings illusion—why clinical quality improvement fails to deliver bottom-line results. N Engl J Med, 365, 2011, e48.
57. 57 National Cancer Policy Forum of the Institute of Medicine. Ensuring quality cancer care through the oncology workforce: sustaining care in the 21st century, 2009, National Academies Press, Washington, DC.
58. 58 Hanly, P, Ceilleachair, AO, Skally, M, et al. How much does it cost to care for survivors of colorectal cancer? Caregiver's time, travel and out-of-pocket costs. Support Care Cancer 21 (2013), 2583–2592.
59. 59 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 27 (2009), 2758–2765.
60. 60 Elkin, EB, Bach, PB, Cancer's next frontier: addressing high and increasing costs. JAMA 303 (2010), 1086–1087.
61. 61 Bach, PB, Limits on Medicare's ability to control rising spending on cancer drugs. N Engl J Med 360 (2009), 626–633.
62. 62 Smith, TJ, Hillner, BE, Bending the cost curve in cancer care. N Engl J Med 364 (2011), 2060–2065.
63. 63 Sullivan R, Peppercorn J, Sikora K, et al. Delivering affordable cancer care in high-income countries. Lancet Oncol; 12: 933–80.
64. 64 Advisory Board Company. Defining accountable cancer care: unclear return on today's cancer care investment. http://www.advisory.com/Research/Oncology-Roundtable/Resources/2011/Posters/~/media/Advisory-com/Screenshots/Posters/OR_HVCC_Infographic_Poster_big.jpg, 2011 (accessed May 4, 2016).
65. 65 Holcombe, D, Oncology management programs for payers and physicians: evaluating current models and diagnosing successful strategies for payers and physicians. J Oncol Pract 7:suppl 3 (2011), e46s–e49s.
66. 66 Guy, GP Jr, Yabroff, KR, Ekwueme, DU, et al. Healthcare expenditure burden among non-elderly cancer survivors, 2008–2012. Am J Prev Med 49:suppl 5 (2015), S489–S497.
67. 67 Guy, GP Jr, Ekwueme, DU, Yabroff, KR, et al. Economic burden of cancer survivorship among adults in the United States. J Clin Oncol 31 (2013), 3749–3757.
68. 68 Yabroff, KR, Lamont, EB, Mariotto, A, et al. Cost of care for elderly cancer patients in the United States. J Natl Cancer Inst 100 (2008), 630–641.
69. 69 Denlinger, CS, Ligibel, JA, Are, M, et al. NCCN guidelines insights: survivorship, version 1. 2016. J Natl Compr Canc Netw 14 (2016), 715–724.
70. 70 Birken, SA, Deal, AM, Mayer, DK, Weiner, BJ, Following through: the consistency of survivorship care plan use in United States cancer programs. J Cancer Educ 29 (2014), 689–697.
71. 71 Birken, S, Deal, A, Mayer, D, et al. Prevalence and barriers to survivorship care plan use in United States cancer programs. J Cancer Educ 4 (2014), 689–697.
72. 72 Forsythe, L, Parry, C, Alfano, C, et al. Gaps in survivorship care plan delivery and potential benefits to survivorship care. J Clin Oncol, 1(suppl), 2013 abstr 9594.
73. 73 Salz, T, Oeffinger, KC, McCabe, MS, Layne, TM, Bach, PB, Survivorship care plans in research and practice. CA Cancer J Clin 62 (2012), 101–117.
74. 74 Stricker, CT, Jacobs, LA, Risendal, B, et al. Survivorship care planning after the institute of medicine recommendations: how are we faring?. J Cancer Surviv 5 (2011), 358–370.
75. 75 Mayer, DK, Nekhlyudov, L, Snyder, CF, Merrill, JK, Wollins, DS, Shulman, LN, American Society of Clinical Oncology clinical expert statement on cancer survivorship care planning. J Oncol Pract 10 (2014), 345–351.
76. 76 Gesme, DH, Wiseman, M, Strategic use of clinical pathways. J Oncol Pract 7 (2011), 54–56.
77. 77 Panella, M, Marchisio, S, Di Stanislao, F, Reducing clinical variations with clinical pathways: do pathways work?. Int J Qual Health Care 15 (2003), 509–521.
78. 78 Zon, RT, Frame, JN, Neuss, MN, et al. American Society of Clinical Oncology policy statement on clinical pathways in oncology. J Oncol Pract 12 (2016), 261–266.
79. 79 Warrington, L, Absolom, K, Velikova, G, Integrated care pathways for cancer survivors—a role for patient-reported outcome measures and health informatics. Acta Oncol 54 (2015), 600–608.
80. 80 Department of Health, Macmillan Cancer Support. NHS Improvement, 2010, The National Cancer Survivorship Initiative Vision, London.
81. 81 Hortobagyi, GN, A shortage of oncologists? The American Society of Clinical Oncology workforce study. J Clin Oncol 25 (2007), 1468–1469.
82. 82 McCabe, MS, Baker, S, Huffman, C, Miller, K, Optimizing survivorship care: academic and community clinic models, 2011, Springer, New York, 223–238.
83. 83 McCabe, MS, Jacobs, LA, Clinical update: survivorship care—models and programs. Semin Oncol Nurs 28 (2012), e1–e8.
84. 84 Lewis, R, Neal, RD, Williams, NH, et al. Nurse-led vs conventional physician-led follow-up for patients with cancer: systematic review. J Adv Nurs 65 (2009), 706–723.
85. 85 Watts, SA, Gee, J, O'Day, ME, et al. Nurse practitioner-led multidisciplinary teams to improve chronic illness care: the unique strengths of nurse practitioners applied to shared medical appointments/group visits. J Am Acad Nurse Pract 21 (2009), 167–172.
86. 86 Sussman, J, Souter, L, Grunfeld, E, et al. Models of care for cancer survivorship. http://www.cancercare.on.ca/common/pages/UserFile.aspx?fileId=258056, 2012 (accessed May 4, 2016).
87. 87 NHS Confederation. Co-ordinated cancer care: better for patients, more efficient, 2010, NHS Confederation, London.
88. 88 Moore, S, Wells, M, Plant, H, Fuller, F, Wright, M, Corner, J, Nurse specialist led follow-up in lung cancer: the experience of developing and delivering a new model of care. Eur J Oncol Nurs 10 (2006), 364–377.
89. 89 Koinberg, IL, Fridlund, B, Engholm, GB, Holmberg, L, Nurse-led follow-up on demand or by a physician after breast cancer surgery: a randomised study. Eur J Oncol Nurs 8 (2004), 109–117 discussion 18–20.
90. 90 Helgesen, F, Andersson, SO, Gustafsson, O, et al. Follow-up of prostate cancer patients by on-demand contacts with a specialist nurse: a randomized study. Scand J Urol Nephrol 34 (2000), 55–61.
91. 91 Ferrell, BR, Virani, R, Smith, S, Juarez, G, The role of oncology nursing to ensure quality care for cancer survivors: a report commissioned by the National Cancer Policy Board and Institute of Medicine. Oncol Nurs Forum 30 (2003), e1–11.
92. 92 Davies, N, Batehup, L, Cancer follow-up: towards a personalised approach to aftercare services. A review of current practice and selected initiatives, 2009, Macmillan Cancer Support, London.
93. 93 Buswell, LA, Ponte, PR, Shulman, LN, Provider practice models in ambulatory oncology practice: analysis of productivity, revenue, and provider and patient satisfaction. J Oncol Pract 5 (2009), 188–192.
94. 94 Gates, P, Krishnasamy, M, Nurse-led survivorship care. Cancer Forum 33 (2009), 1–4.
95. 95 John, C, Armes, J, Developing a nurse-led survivorship service for patients with lymphoma. Eur J Oncol Nurs 17 (2013), 521–527.
96. 96 Beaver, K, Tysver-Robinson, D, Campbell, M, et al. Comparing hospital and telephone follow-up after treatment for breast cancer: randomised equivalence trial. BMJ, 338, 2009, a3147.