“Improving to where?”: treatment-related health risks and perceptions of the future among adolescents and young adults after hematopoietic cell transplantation
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Despite the prevalence of hematological malignancies in early adulthood, very little is known about hematopoietic cell transplantation among adolescents and young adults, and even less is known about their transition from the completion of therapy to early survivorship. In this qualitative study, we investigated the impact of the cancer experience on sense of life potential and perception of the future from the perspectives of adolescents and young adults after hematopoietic cell transplantation.
In-depth interviews were conducted with adolescents and young adults who underwent allogeneic or autologous hematopoietic cell transplantation between the ages of 15–29 years and were 6–60 months post-treatment. Interview transcripts were systematically coded based on constructivist grounded theory.
Eighteen adolescents and young adults participated and described how they came to understand the lifelong, chronic nature of cancer survivorship. “Improving to where?” was a question raised in the post-treatment period that reflected participants’ confusion about the goals of treatment and expectations for survivorship. Participants reported bracing themselves for “something bad” to deal with the uncertainty of medical and psychosocial effects of treatment. They struggled to move forward with their lives given their substantial health risks and found it necessary to “roll with the punches” in order to adjust to this new reality.
Adolescents and young adults who undergo hematopoietic cell transplantation are at significant risk for long-term and late effects in survivorship. Age-appropriate interventions are needed to support these survivors as they manage their fears about the future while enhancing health and well-being.
KeywordsCancer Survivorship Adolescents Young adults Transplantation Late effects
We acknowledge the support of Dr. Julie Wolfson, Dr. Saro Armenian, Dr. Stephen Forman, Lindsey Hageman, Alysia Bosworth, and Laura Gustafson.
This study was supported by a dissertation research grant from the Oncology Nursing Society (ONS)/ONS Foundation and in part by a NIH/NINR Ruth L. Kirschstein National Research Service Award (NRSA) Institutional Research Training Grant [T32 NR 07077].
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflicts of interest.
All procedures performed in this study which involved human participants were in accordance with the ethical standards of the institutional national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
- 5.National Marrow Donor Program [NMDP]. Outcomes in unrelated hematopoietic cell transplantation: applying new data for referral and decision-making 2012. Available from: https://bethematchclinical.org/WorkArea/DownloadAsset.aspx?id=3535
- 7.Sun CL, Francisco L, Baker KS, Weisdorf DJ, Forman SJ, Bhatia S (2011) Adverse psychological outcomes in long-term survivors of hematopoietic cell transplantation: a report from the Bone Marrow Transplant Survivor Study (BMTSS). Blood 118(17):4723–4731. https://doi.org/10.1182/blood-2011-04-348730 CrossRefPubMedPubMedCentralGoogle Scholar
- 8.Sun CL, Kersey JH, Francisco L, Armenian SH, Baker KS, Weisdorf DJ et al (2013) Burden of morbidity in 10+ year survivors of hematopoietic cell transplantation: report from the bone marrow transplantation survivor study. Biol Blood Marrow Transplant 19(7):1073–1080. https://doi.org/10.1016/j.bbmt.2013.04.002 CrossRefPubMedPubMedCentralGoogle Scholar
- 10.Adolescent and Young Adult Oncology Progress Review Group [AYAOPRG]. Closing the gap: Research and care imperatives for adolescents and young adults with cancer. Bethesda, MD: Department of Health and Human Services, National Institute of Health, National Cancer Institute, and the Livestrong Young Adult Alliance; 2006Google Scholar
- 14.Ragsdale JR, Hegner MA, Mueller M, Davies S (2014) Identifying religious and/or spiritual perspectives of adolescents and young adults receiving blood and marrow transplants: a prospective qualitative study. Biol Blood Marrow Transplant 20(8):1242–1247. https://doi.org/10.1016/j.bbmt.2014.04.013 CrossRefPubMedGoogle Scholar
- 15.Robb SL, Burns DS, Stegenga KA, Haut PR, Monahan PO, Meza J et al (2014) Randomized clinical trial of therapeutic music video intervention for resilience outcomes in adolescents/young adults undergoing hematopoietic stem cell transplant: a report from the Children’s Oncology Group. Cancer 120(6):909–917. https://doi.org/10.1002/cncr.28355 CrossRefPubMedPubMedCentralGoogle Scholar
- 16.Rosipal NC, Mingle L, Smith J, Morris GS (2013) Assessment of voluntary exercise behavior and active video gaming among adolescent and young adult patients during hematopoietic stem cell transplantation. J Pediatr Oncol Nurs 30(1):24–33. https://doi.org/10.1177/1043454212461071 CrossRefPubMedGoogle Scholar
- 17.Nass SJ, Beaupin LK, Demark-Wahnefried W, Fasciano K, Ganz PA, Hayes-Lattin B et al (2015) Identifying and addressing the needs of adolescents and young adults with cancer: summary of an Institute of Medicine workshop. Oncologist 20(2):186–195. https://doi.org/10.1634/theoncologist.2014-0265 CrossRefPubMedPubMedCentralGoogle Scholar
- 18.Brauer EB, Pieters HC, Ganz PA, Landier W, Pavlish C, Heilemann MV (2017) “From snail mode to rocket ship mode”: adolescents and young adults’ experiences of returning to work and school after hematopoietic cell transplantation. J Adolesc Young Adult Oncol. https://doi.org/10.1089/jayao.2017.0025
- 19.Charmaz K (2014) Constructing grounded theory: a practical guide through qualitative analysis. Sage, LondonGoogle Scholar
- 20.Corbin J, Strauss BG (2015) Basics of qualitative research 4e (techniques & procedures for developing grounded theory). Sage, Thousand Oaks, CAGoogle Scholar
- 21.Corbin J, Strauss A (2008) Basics of qualitative research (techniques & procedures for developing grounded theory). 3rd ed. style=“margin-left:.5in pcM, text-indent:-.5in, line-height:200%, mso-pagination:none, mso-layout-grid-align:none, text-autospace:none”>, editors. Thousand Oaks, CA: SageGoogle Scholar
- 22.ATLAS.ti Version 7.5.10. Berlin: Scientific Software Development; 2016Google Scholar
- 23.Koocher GP, O'Malley JE (1981) The Damocles syndrome: psychosocial consequences of surviving childhood cancer. McGraw-Hill Inc., New York, NYGoogle Scholar
- 25.Bhatia S. Caring for the long-term survivor after allogeneic stem cell transplantation. Hematol Am Soc Hematol Educ Prog 2014;2014(1):495–503. Epub 2015/02/20. doi: https://doi.org/10.1182/asheducation-2014.1.495
- 27.Baker KS, Ness KK, Weisdorf D, Francisco L, Sun CL, Forman S et al (2010) Late effects in survivors of acute leukemia treated with hematopoietic cell transplantation: a report from the Bone Marrow Transplant Survivor Study. Leukemia 24(12):2039–2047. https://doi.org/10.1038/leu.2010.210 CrossRefPubMedPubMedCentralGoogle Scholar
- 30.Sherman AC, Simonton S, Latif U, Spohn R, Tricot G (2004) Psychosocial adjustment and quality of life among multiple myeloma patients undergoing evaluation for autologous stem cell transplantation. Bone Marrow Transplant 33(9):955–962. https://doi.org/10.1038/sj.bmt.1704465 CrossRefPubMedGoogle Scholar
- 31.Bevans MF, Mitchell SA, Barrett JA, Bishop MR, Childs R, Fowler D et al (2014) Symptom distress predicts long-term health and well-being in allogeneic stem cell transplantation survivors. Biol Blood Marrow Transplant 20(3):387–395. https://doi.org/10.1016/j.bbmt.2013.12.001 CrossRefPubMedGoogle Scholar
- 33.Park JE, Kim KI, Yoon SS, Hahm BJ, Lee SM, Yoon JH, Shin WG, Lee HS, Oh JM (2010) Psychological distress as a negative survival factor for patients with hematologic malignancies who underwent allogeneic hematopoietic stem cell transplantation. Pharmacotherapy 30(12):1239–1246. https://doi.org/10.1592/phco.30.12.1239 CrossRefPubMedGoogle Scholar
- 34.Scott BL, Pasquini MC, Logan BR, Wu J, Devine SM, Porter DL, et al. (2017) Myeloablative versus reduced-intensity hematopoietic cell transplantation for acute myeloid leukemia and myelodysplastic syndromes (1527–7755 (Electronic))Google Scholar
- 36.Shay LA, Carpentier MY, Vernon SW (2016) Prevalence and correlates of fear of recurrence among adolescent and young adult versus older adult post-treatment cancer survivors. Support Care Cancer. https://doi.org/10.1007/s00520-016-3317-9
- 37.Pulewka K, Wolff D, Herzberg PY, Greinix H, Heussner P, Mumm FHA, et al. Physical and psychosocial aspects of adolescent and young adults after allogeneic hematopoietic stem-cell transplantation: results from a prospective multicenter trial. LID - https://doi.org/10.1007/s00432-017-2424-4 [doi]. (1432–1335 (Electronic))
- 38.Smits-Seemann RR, Yi J, Tian T, Warner EL, Kirchhoff AC. A qualitative inquiry of childhood and adolescent cancer survivors’ perspectives of independence.J Adolesc Young Adult Oncol. 2016. doi: https://doi.org/10.1089/jayao.2016.0022
- 40.Landier W, Chen Y, Namdar G, Francisco L, Wilson K, Herrera C et al (2015) Impact of tailored education on awareness of personal risk for therapy-related complications among childhood cancer survivors. J Clin Oncol 33(33):3887–3893. https://doi.org/10.1200/JCO.2015.62.7562 CrossRefPubMedPubMedCentralGoogle Scholar
- 41.Commission on Cancer. Cancer program standards: ensuring patient-centered care (2016 Edition) 2016. Available from: https://www.facs.org/quality-programs/cancer/coc/standards
- 42.Hewitt M, Greenfield S, Stovall E (2006) From cancer patient to cancer survivor: lost in transition. The National Academies Press, Washington, D.C.Google Scholar