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Evaluation of the discussion of late effects and screening recommendations in survivors of adolescent and young adult (AYA) lymphoma

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Abstract

Purpose

The study objective was to assess the discussion of late effects (LEs) and screening recommendations (SRs) for adolescent and young adults (AYAs) treated for lymphoma.

Methods

A retrospective study was conducted on AYA lymphoma survivors aged 15–24 years at diagnosis who received radiation therapy (RT) ± chemotherapy between 1984 and 2010 at any of the six British Columbia (BC) Cancer treatment centers across the province. Charts were reviewed to evaluate discussion of LEs and SRs. Susceptibility to specific LEs was determined by reviewing treatment details.

Results

Of 305 patients, 212 (70%) had documented discussion of at least one specific LE, 39 (13%) had non-specific documentation only, and 54 (18%) had no documented discussion of LEs. Accounting only for patients susceptible to each LEs, the most frequently discussed LEs was radiation-induced (RI) neoplasm (42%), and the least frequently discussed LEs was carotid artery stenosis (0.4%). The most common SRs discussed in susceptible patients was for RI breast cancer (43%). Of patients discharged between 1985 and 1999 vs 2000 and 2014, LEs were discussed in 63 vs 93% (P < 0.0005), and SRs were discussed in 30 vs 65%, respectively (P < 0.0005). Older age at discharge, presence of a discharge note, and occurrence of a discharge appointment were associated with increased discussion of SRs.

Conclusions

Most survivors of AYA lymphoma received some discussion of LEs and SRs, but each relevant LEs and SRs was discussed in only a minority of susceptible patients.

Implications for Cancer Survivors

Survivors of AYA lymphoma and their primary care professionals may not be appropriately informed of health risks and how to screen for them.

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References

  1. Young people’s cancers incidence statistics. Cancer Research UK. https://www.cancerresearchuk.org/health-professional/cancer-statistics/young-people-cancers/incidence#ref-2. Published June 12, 2019. Accessed January 4, 2020.

  2. Hodgkin lymphoma survival statistics. Cancer Research UK. https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/hodgkin-lymphoma/survival#heading-One. Published November 28, 2014. Accessed January 4, 2020.

  3. Non-Hodgkin lymphoma survival statistics. Cancer Research UK. https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/non-hodgkin-lymphoma/survival#heading-One. Published February 17, 2016. Accessed April 1, 2020.

  4. Barr RD, Ferrari A, Ries L, Whelan J, Bleyer WA. Cancer in adolescents and young adults. JAMA Pediatr. 2016;170(5):495–7. https://doi.org/10.1001/jamapediatrics.2015.4689.

    Article  PubMed  Google Scholar 

  5. Nass SJ, Beaupin LK, Demark-Wahnefried W, Fasciano K, Ganz PA, Hayes-Lattin B, et al. Identifying and addressing the needs of adolescents and young adults with cancer: summary of an institute of medicine workshop. Oncologist. 2015;20(2):186–95. https://doi.org/10.1634/theoncologist.2014-0265.

    Article  PubMed  PubMed Central  Google Scholar 

  6. Keegan THM, Kushi LH, Li Q, Brunson A, Chawla X, Chew HK, et al. Cardiovascular disease incidence in adolescent and young adult cancer survivors: a retrospective cohort study. Journal of Cancer Survivorship. 2018;12:1–10. https://doi.org/10.1007/s11764-018-0678-8.

  7. Zhang Y, Goddard K, Spinelli JJ, Gotay C, McBride ML. Risk of late mortality and second malignant neoplasms among 5-year survivors of young adult cancer: a report of the childhood, adolescent, and young adult cancer survivors research program. J Cancer Epidemiol. 2012;2012(13):1–11. https://doi.org/10.1155/2012/103032.

    Article  Google Scholar 

  8. Nathan PC, Hayes-Lattin B, Sisler JJ, Hudson MM. Critical issues in transition and survivorship for adolescents and young adults with cancers. Cancer. 2011;117(S10):2335–41. https://doi.org/10.1002/cncr.26042.

    Article  PubMed  Google Scholar 

  9. Nathan PC, Daugherty CK, Wroblewski KE, Kigin ML, Stewart TV, Hlubocky FJ, et al. Family physician preferences and knowledge gaps regarding the care of adolescent and young adult survivors of childhood cancer. J Cancer Surviv. 2013;7(3):275–82. https://doi.org/10.1007/s11764-013-0271-0.

    Article  PubMed  Google Scholar 

  10. What should the age range be for AYA oncology? J Adolesc Young Adult Oncol. 2011;1(1):3–10. https://doi.org/10.1089/jayao.2011.1505.

  11. Hay AE, Rae C, Fraser GA, Meyer RM, Abbott LS, Bevan S, et al. Accrual of adolescents and young adults with cancer to clinical trials. Curr Oncol. 2016;23(2):81–6. https://doi.org/10.3747/co.23.2925.

    Article  Google Scholar 

  12. McBride ML, Rogers PC, Sheps SB, et al. Childhood, adolescent, and young adult cancer survivors research program of British Columbia: objectives, study design, and cohort characteristics. Pediatr Blood Cancer. 2010;55(2):324–30. https://doi.org/10.1002/pbc.22476.

    Article  PubMed  Google Scholar 

  13. van Nimwegen FA, Schaapveld M, Janus CPM, Krol ADG, Petersen EJ, Raemaekers JMM, et al. Cardiovascular disease after Hodgkin lymphoma treatment. JAMA Intern Med. 2015;175(6):1007–11. https://doi.org/10.1001/jamainternmed.2015.1180.

    Article  PubMed  Google Scholar 

  14. Aleman BMP, van den Belt-Dusebout AW, De Bruin ML, et al. Late cardiotoxicity after treatment for Hodgkin lymphoma. Blood. 2007;109(5):1878–86. https://doi.org/10.1182/blood-2006-07-034405.

    Article  CAS  PubMed  Google Scholar 

  15. Schaapveld M, Aleman BMP, van Eggermond AM, Janus CPM, Krol ADG, van der Maazen RWM, et al. Second cancer risk up to 40 years after treatment for Hodgkin’s lymphoma. N Engl J Med. 2015;373(26):2499–511. https://doi.org/10.1056/NEJMoa1505949.

    Article  CAS  PubMed  Google Scholar 

  16. Hahn EE, Wu YL, Munoz Plaza CE, Garcia Delgadillo J, Cooper RM, Chao CR. Use of recommended posttreatment services for adolescent and young adult survivors of Hodgkin lymphoma. Cancer. 2019;125(9):1558–67. https://doi.org/10.1002/cncr.31953.

    Article  PubMed  Google Scholar 

  17. Yan AP, Chen Y, Henderson TO, et al. Adherence to surveillance for second malignant neoplasms and cardiac dysfunction in childhood cancer survivors: a childhood cancer survivor study. J Clin Oncol. 2020;38(15):1711–22. https://doi.org/10.1200/JCO.19.01825.

    Article  PubMed  PubMed Central  Google Scholar 

  18. Suh E, Daugherty CK, Wroblewski K, Lee H, Kigin ML, Rasinski KA, et al. General internists’ preferences and knowledge about the care of adult survivors of childhood cancer: a cross-sectional survey. Ann Intern Med. 2014;160(1):11–7. https://doi.org/10.7326/M13-1941.

    Article  PubMed  PubMed Central  Google Scholar 

  19. Ramsay JM, Mann K, Kaul S, Zamora ER, Smits-Seemann RR, Kirchhoff AC. Follow-up care provider preferences of adolescent and young adult cancer survivors. J Adolesc Young Adult Oncol. 2018;7(2):204–9. https://doi.org/10.1089/jayao.2017.0083.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Henderson TO, Hlubocky FJ, Wroblewski KE, Diller L, Daugherty CK. Physician preferences and knowledge gaps regarding the care of childhood cancer survivors: a mailed survey of pediatric oncologists. J Clin Oncol. 2010;28(5):878–83. https://doi.org/10.1200/JCO.2009.25.6107.

    Article  PubMed  Google Scholar 

  21. Frederick NN, Bober SL, Berwick L, Tower M, Kenney LB. Preparing childhood cancer survivors for transition to adult care: the young adult perspective. Pediatr Blood Cancer. 2017;64(10):e26544–9. https://doi.org/10.1002/pbc.26544.

    Article  Google Scholar 

  22. Szalda D, Pierce L, Hobbie W, Ginsberg JP, Brumley L, Wasik M, et al. Engagement and experience with cancer-related follow-up care among young adult survivors of childhood cancer after transfer to adult care. J Cancer Surviv. 2015;10(2):342–50. https://doi.org/10.1007/s11764-015-0480-9.

    Article  PubMed  Google Scholar 

  23. Hudson SV, Ohman-Strickland PA, Bator A, O’Malley D, Gundersen D, Lee HS, et al. Breast and prostate cancer survivors’ experiences of patient-centered cancer follow-up care from primary care physicians and oncologists. J Cancer Surviv. 2016;10:1–9. https://doi.org/10.1007/s11764-016-0537-4.

    Article  Google Scholar 

  24. Casillas J, Oeffinger KC, Hudson MM, Greenberg ML, Yeazel MW, Ness KK, et al. Identifying predictors of longitudinal decline in the level of medical care received by adult survivors of childhood cancer: a report from the childhood cancer survivor study. Health Serv Res. 2015;50(4):1021–42. https://doi.org/10.1111/1475-6773.12282.

    Article  PubMed  PubMed Central  Google Scholar 

  25. Skinner R, Wallace WHB, Levitt GA. Long-term follow-up of people who have survived cancer during childhood. Lancet Oncol. 2006;7(6):489–98. https://doi.org/10.1016/S1470-2045(06)70724-0.

    Article  PubMed  Google Scholar 

  26. 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. https://doi.org/10.1056/NEJMsa060185.

    Article  CAS  PubMed  Google Scholar 

  27. Salz T, Oeffinger KC, McCabe MS, Layne TM, Bach PB. Survivorship care plans in research and practice. CA Cancer J Clin. 2012;62(2):101–17. https://doi.org/10.3322/caac.20142.

    Article  PubMed  PubMed Central  Google Scholar 

  28. Iyer NS, Mitchell H-R, Zheng DJ, Ross WL, Kadan-Lottick NS. Experiences with the survivorship care plan in primary care providers of childhood cancer survivors: a mixed methods approach. Support Care Cancer. 2017;25:1–9. https://doi.org/10.1007/s00520-016-3544-0.

  29. Salz T, McCabe MS, Onstad EE, et al. Survivorship care plans: is there buy-in from community oncology providers? Cancer. 2014;120(5):722–30. https://doi.org/10.1002/cncr.28472.

    Article  PubMed  Google Scholar 

  30. Salz T, Baxi S. Moving survivorship care plans forward: focus on care coordination. Cancer Med. 2016;5(7):1717–22. https://doi.org/10.1002/cam4.733.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Prasad PK, Hardy KK, Zhang N, Edelstein K, Srivastava D, Zeltzer L, et al. Psychosocial and neurocognitive outcomes in adult survivors of adolescent and early young adult cancer: a report from the childhood cancer survivor study. J Clin Oncol. 2015;33(23):2545–52. https://doi.org/10.1200/JCO.2014.57.7528.

    Article  PubMed  PubMed Central  Google Scholar 

  32. Knapp CA, Quinn GP. Healthcare provider perspectives on fertility preservation for cancer patients. In: Oncofertility. Vol 156. Cancer Treatment and Research. Boston, MA: Springer US; 2010:391–401. https://doi.org/10.1007/978-1-4419-6518-9_30.

  33. Neuss MN, Malin JL, Chan S, Kadlubek PJ, Adams JL, Jacobson JO, et al. Measuring the improving quality of outpatient care in medical oncology practices in the United States. J Clin Oncol. 2013;31(11):1471–7. https://doi.org/10.1200/JCO.2012.43.3300.

    Article  PubMed  Google Scholar 

  34. Lee JS, DuBois SG, Coccia PF, Bleyer A, Olin RL, Goldsby RE. Increased risk of second malignant neoplasms in adolescents and young adults with cancer. Cancer. 2015;122(1):116–23. https://doi.org/10.1002/cncr.29685.

    Article  PubMed  Google Scholar 

  35. D’Agostino NM, Penney A, Zebrack B. Providing developmentally appropriate psychosocial care to adolescent and young adult cancer survivors. Cancer. 2011;117(S10):2329–34. https://doi.org/10.1002/cncr.26043.

    Article  PubMed  Google Scholar 

  36. Shay LA, Parsons HM, Vernon SW. Survivorship care planning and unmet information and service needs among adolescent and young adult cancer survivors. J Adolesc Young Adult Oncol. 2017;6(2):327–32. https://doi.org/10.1089/jayao.2016.0053.

    Article  PubMed  PubMed Central  Google Scholar 

  37. Dyson GJ, Thompson K, Palmer S, Thomas DM, Schofield P. The relationship between unmet needs and distress amongst young people with cancer. Support Care Cancer. 2011;20(1):75–85. https://doi.org/10.1007/s00520-010-1059-7.

    Article  PubMed  Google Scholar 

  38. Hess SL, Jóhannsdóttir IM, Hamre H, Kiserud CE, Loge JH, Fosså SD. Adult survivors of childhood malignant lymphoma are not aware of their risk of late effects. Acta Oncol. 2011;50(5):653–9. https://doi.org/10.3109/0284186X.2010.550934.

    Article  PubMed  Google Scholar 

  39. Kadan-Lottick NS, Robison LL, Gurney JG, Neglia JP, Yasui Y, Hayashi R, et al. Childhood cancer survivors’ knowledge about their past diagnosis and treatment: childhood cancer survivor study. JAMA. 2002;287(14):1832–9. https://doi.org/10.1001/jama.287.14.1832.

    Article  PubMed  Google Scholar 

  40. Ruud E, Kanellopoulos A, Zeller B, Widing E, Tjønnfjord GE, Fosså SD. Patient knowledge of late effects of acute lymphoblastic leukaemia. Tidsskr Nor Laegeforen. 2012;132(18):2052–5. https://doi.org/10.4045/tidsskr.12.0153.

    Article  PubMed  Google Scholar 

  41. Blaauwbroek R, Tuinier W, Meyboom-de Jong B, Kamps WA, Postma A. Shared care by paediatric oncologists and family doctors for long-term follow-up of adult childhood cancer survivors: a pilot study. Lancet Oncol. 2008;9(3):232–8. https://doi.org/10.1016/S1470-2045(08)70034-2.

    Article  PubMed  Google Scholar 

  42. Zebrack B. Information and service needs for young adult cancer survivors. Support Care Cancer. 2008;17(4):349–57. https://doi.org/10.1007/s00520-008-0469-2.

    Article  PubMed  Google Scholar 

  43. Skaczkowski G, White V, Thompson K, Bibby H, Coory M, Pinkerton R, et al. Factors influencing the documentation of fertility-related discussions for adolescents and young adults with cancer. Eur J Oncol Nurs. 2018;34:42–8. https://doi.org/10.1016/j.ejon.2018.02.007.

    Article  CAS  PubMed  Google Scholar 

  44. Quinn GP, Block RG, Clayman ML, Kelvin J. If you did not document it, it did not happen: rates of documentation of discussion of infertility risk in adolescent and young adult oncology patients’ medical records. JOP. 2015;11(2):1–9.

    Google Scholar 

  45. Kumar A, Merali A, Pond GR, Zbuk K. Fertility risk discussions in young patients diagnosed with colorectal cancer. Curr Oncol. 2012;19(3):1–6. https://doi.org/10.3747/co.19.942.

    Article  Google Scholar 

  46. Lewin J, Ma JMZ, Mitchell L, Tam S, Puri N, Stephens D, et al. The positive effect of a dedicated adolescent and young adult fertility program on the rates of documentation of therapy-associated infertility risk and fertility preservation options. Support Care Cancer. 2017;25:1–8. https://doi.org/10.1007/s00520-017-3597-8.

  47. Salsman JM, Yanez B, Smith KN, Beaumont JL, Snyder MA, Barnes K, et al. Documentation of fertility preservation discussions for young adults with cancer: examining compliance with treatment guidelines. J Natl Compr Cancer Netw. 2016;14(3):301–9. https://doi.org/10.6004/jnccn.2016.0035.

    Article  Google Scholar 

  48. Howard AF, Tran J, Aparicio A, Lo A, Ullett A, McKenzie M, et al. Documentation of late-effects risks and screening recommendations for adolescent and young adult central nervous system, soft tissue, or bone tumor survivors treated with radiotherapy in British Columbia, Canada. J Adolesc Young Adult Oncol. 2019;8(2):142–8. https://doi.org/10.1089/jayao.2018.0081.

    Article  PubMed  Google Scholar 

  49. Hamilton SN, Hasan H, Parsons C, Tyldesley S, Howard AF, Bobinski MA, et al. Canadian radiation oncologists’ opinions regarding peer review: a national survey. Pract Radiat Oncol. 2014;5:120–6. https://doi.org/10.1016/j.prro.2014.06.002.

    Article  PubMed  Google Scholar 

  50. Greenfield DM, Absolom K, Eiser C, et al. Follow-up care for cancer survivors: the views of clinicians. Br J Cancer. 2009;101(4):568–74. https://doi.org/10.1038/sj.bjc.6605160.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  51. Dulko D, Pace CM, Dittus KL, Sprague BL, Pollack LA, Hawkins NA, et al. Barriers and facilitators to implementing cancer survivorship care plans. Oncol Nurs Forum. 2013;40(6):575–80. https://doi.org/10.1188/13.ONF.575-580.

    Article  PubMed  PubMed Central  Google Scholar 

  52. Cox A, Faithfull S. They’re survivors physically but we want them to survive mentally as well: health care professionals’ views on providing potential late effect information. Support Care Cancer. 2013;21(9):2491–7. https://doi.org/10.1007/s00520-013-1806-7.

    Article  PubMed  Google Scholar 

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Authors and Affiliations

  1. Department of Radiation Oncology, British Columbia (BC) Cancer, 600 West 10th Avenue, Vancouver, BC, V5Z 4E6, Canada

    Andrea C. Lo & Karen Goddard

  2. Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada

    Andrea C. Lo, Vanessa Samuel, Ben Chen, Kerry J. Savage, Ciara Freeman & Karen Goddard

  3. Centre of Lymphoid Cancer, BC Cancer, Vancouver, BC, Canada

    Kerry J. Savage & Ciara Freeman

  4. Department of Medical Oncology, BC Cancer, Vancouver, BC, Canada

    Kerry J. Savage & Ciara Freeman

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  1. Andrea C. Lo
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Correspondence to Andrea C. Lo.

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Conflict of interest

K.J.S received institutional research funding from Roche. C.F. has honoraria from Seattle Genetics, Janssen, Amgen, Celgene, and Abbvie, and research funding from Roche and Teva. A.C.L has no conflict of interest. V.S. has no conflict of interest. B.C. has no conflict of interest. K.G. has no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the University of BC/BC Cancer Research Ethics Board and with the 1964 Helsinki declaration and its later amendments.

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As this was a retrospective study involving no interaction with or risk to participants, obtaining informed consent from individual participants was not deemed necessary by the University of BC/BC Cancer Research Ethics Board.

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Lo, A.C., Samuel, V., Chen, B. et al. Evaluation of the discussion of late effects and screening recommendations in survivors of adolescent and young adult (AYA) lymphoma. J Cancer Surviv 15, 179–189 (2021). https://doi.org/10.1007/s11764-020-00922-7

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