Childhood to adult transition and long-term follow-up after blood and marrow transplantation

Bone Marrow Transplantation

Volumn 51, Issue 2, 2016, Pages 176-181

  Cupit, M C ^a   Duncan, C ^b   Savani, B N ^c   Hashmi, S K ^a  

^a MAYO CLINIC COLLEGE OF MEDICINE   (United States)

^b HARVARD UNIVERSITY   (United States)

^c VANDERBILT UNIVERSITY   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

BONE MARROW TRANSPLANTATION; CANCER SURVIVOR; CHILDHOOD LEUKEMIA; CHRONIC GRAFT VERSUS HOST DISEASE; DELAYED PUBERTY; DISEASE SEVERITY; GENERALIZED ANXIETY DISORDER; HEALTH CARE ACCESS; HEALTH CARE COST; HUMAN; HYPOTHYROIDISM; INFERTILITY; LONG TERM MEMORY; LONG TERM SURVIVAL; MAJOR DEPRESSION; MOTOR DYSFUNCTION; POSTTRAUMATIC STRESS DISORDER; PRACTICE GUIDELINE; PREVALENCE; PRIORITY JOURNAL; QUALITY OF LIFE; REVIEW; SELF CONCEPT; SOCIAL COMPETENCE; THYROID TUMOR; THYROIDITIS; ADOLESCENT; ADULT; AGING; ALLOGRAFT; CHILD; ENDOCRINE SYSTEM; FEMALE; HEMATOPOIETIC STEM CELL TRANSPLANTATION; INFANT; MALE; MENTAL HEALTH; PRESCHOOL CHILD; SURVIVOR; UNITED STATES;

ADOLESCENT; ADULT; AGING; ALLOGRAFTS; BONE MARROW TRANSPLANTATION; CHILD; CHILD, PRESCHOOL; ENDOCRINE SYSTEM; FEMALE; HEMATOPOIETIC STEM CELL TRANSPLANTATION; HUMANS; INFANT; INFERTILITY; MALE; MENTAL HEALTH; SURVIVORS; UNITED STATES;

EID: 84956937744     PISSN: 02683369     EISSN: 14765365     Source Type: Journal    
DOI: 10.1038/bmt.2015.228     Document Type: Review

References (86)

1. Pasquini MC, Zhu X. Current uses and outcomes of hematopoietic stem cell transplantation: 2014 CIBMTR Summary Slides. Available at http://www.cibmtr. org. Accessed on 05 May 2015
2. Majhail NS, Tao L, Bredeson C, Davies S, Dehn J, Gajewski JL et al. Prevalence of hematopoietic cell transplant survivors in the United States. Biol Blood Marrow Transplant 2013; 19: 1498-1501
3. Hashmi S, Carpenter P, Khera N, Tichelli A, Savani BN. Lost in transition: the essential need for long-term follow-up clinic for blood and marrow transplantation survivors. Biol Blood Marrow Transplant 2015; 21: 225-232
4. Armenian SH, Sun CL, Kawashima T, Arora M, Leisenring W, Slkar CA et al. Longterm health-related outcomes in survivors of childhood cancer treated with HSCT versus conventional therapy; a report from the Bone Marrow Transplant Survivor Study (BMTSS) and Childhood Cancer Survivor Study (CCSS). Blood 2011; 118: 1413-1420
5. Ferry C, Socie G. Busulfan-cyclophosphamide versus total body irradiation-cyclophosphamide as preparative regimen before allogeneic hematopoietic stem cell transplantation for acute myeloid leukemia: What have we learned? Exp Hematol 2003; 31: 1182-1186
6. Nieder ML, McDonald GB, Kida A, Hingorani S, Armenian SH, Cooke KR et al. National Cancer Institute-National Heart, Lung and Blood Institute/pediatric Blood and Marrow Transplant Consortium First International Consensus Conference on late effects are pediatric hematopoietic cell transplantation: long-term organ damage dysfunction. Biol Blood Marrow Transplant 2011; 17: 1573-1584
7. Krischer JP, Epstein S, Cuthbertson DD, Goorin AM, Epstein ML, Lipshultz SE. Clinical cardiotoxicity following anthracycline treatment for childhood cancer: the Pediatric Oncology Group experience. J Clin Oncol 1997; 15: 1544-1552
8. Kremer LC, van Dalen EC, Offringa M, Ottenkamp J, Voûte PA. Anthracyclineinduced clinical heart failure in a cohort of 607 children: long-term followup study. J Clin Oncol 2001; 19: 191-196
9. Volkova M, Russell R. Anthracycline cardiotoxicity: prevalence, pathogenesis, and treatment. Curr Cardiol Rev 2011; 7: 214-220
10. Monrovia CA. Children's Oncology Group Children's Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers, Version 4.0 (COG website]. October 2013. Available at www.survivorshipguidelines. org. Accessed on 2 June 2015
11. Shalitin S, Phillip M, Stein J, Goshen Y, Carmi D, Yaniv I. Endocrine dysfunction and parameters of the metabolic syndrome after bone marrow transplantation during childhood and adolescence. Bone Marrow Transplant 2006; 37: 1109-1117
12. Green DM, Liu W, Kutteh WH. Cumulative alkylating agent exposure and semen parameters in adult survivors of childhood cancer: a report from the St Jude Lifetime Cohort Study. Lancet 2014; 15: 1215-1223
13. Byrne J, Mulvihill JJ, Myers MH. Effects of treatment on fertility in long-term survivors of childhood or adolescent cancer. N Engl J Med 1987; 317: 1315-1321
14. Kashyap A, Kandeel F, Yamauchi D, Palmer JM, Niland JC, Molina A et al. Effects of allogeneic bone marrow transplantation on recipient bone mineral density: a prospective study. Biol Blood Marrow Transplant 2000; 6: 344-351
15. Stuber ML, Nader K, Yasuda P, Pynoos RS, Cohen S. Stress responses after pediatric bone marrow transplantation: preliminary results of a prospective longitudinal study. J Am Acad Child Adolesc Psychiatry 1991; 30: 952-957
16. Phipps S, Brenner M, Heslop H, Krance R, Jayawardene D, Mulhem R. Psychological effects of bone marrow transplantation on children and adolescents: preliminary report of a longitudinal study. Bone Marrow Transplant 1995; 15: 829-835
17. Tichelli A, Labopin M, Rovo A. Increase of suicide and accidental death after hematopoietic stem cell transplantation: a cohort study on behalf of the Late Effects Working Party of the European Group for Blood and Marrow Transplantation (EBMT). Cancer 2013; 119: 2012-2021
18. Bhatia S, Ramsay NK, Steinbuch M, Dusenbery KE, Shapiro RS, Weisdorf DJ et al. Malignant neoplasms following bone marrow transplantation. Blood 1996; 87: 3633-3639
19. Anderson JE, Gooley TA, Schoch G, Anasetti C, Bensinger WI, Clift RA et al. Stem cell transplantation for secondary acute myeloid leukemia: evaluation of transplantation as initial therapy or following induction chemotherapy. Blood 1997; 89: 2578-2585
20. Baker KS, DeFor TE, Burns LJ. New malignancies after blood or marrow stem-cell transplantation in children and adults: incidence and risk factors. J Clin Oncol 2003; 21: 1352-1358
21. Koocher GP, O'Malley JE. The Damocles Syndrome: Psychosocial Consequences of Surviving Childhood Cancer. McGraw Hill: New York, 1981
22. Kornblith AB. Psychosocial adaptation of cancer survivors. In: Holland JC (ed.). Psychooncology. Oxford University Press: New York, 1998, pp 223-254
23. Schultz KA, Ness KK, Whitton J, Recklitis C, Zebrack B, Robinson LL et al. Behavioral and social outcomes in adolescent survivors of childhood cancer: a report from the childhood cancer survivor study. J Clin Oncol 2007; 25: 3649-3656
24. Hudson MM, Mertens AC, Yasui Y, Hobbie W, Chen H, Gurney JG et al. Health status of adult long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. JAMA 2003; 290: 1583-1592
25. Bush NE, Donaldson GW, Haberman MH, Dacanay R, Sullivan KM. Conditional and unconditional estimation of multidimensional quality of life after hematopoietic stem cell transplantation: a longitudinal follow-up of 415 patients. Biol Blood Marrow Transplant 2000; 6: 576-591
26. Molassiotis A, van den Akker OB, Milligan DW, Goldman JM, Boughton BJ, Holmes JA et al. Quality of life in long-term survivors of marrow transplantation: comparison with a matched group receiving maintenance chemotherapy. Bone Marrow Tranplant 1996; 17: 249-258
27. Lesko LM, Ostroff JS, Mumma GH, Mashberg DE, Holland JC. Long-term, psychological adjustment of acute leukemia survivors: impact of bone marrow transplantation versus conventional chemotherapy. Psychosom Med 1992; 54: 30-47
28. Robb SL, Ebberts AG. Songwriting and digital video production interventions for pediatric patients undergoing bone marrow transplantation, part I: an analysis of depression and anxiety levels according to phase of treatment. J Pediatr Oncol Nurs 2003; 20: 2-15
29. Pot-Mees C, Zeitlin H. Psychosocial consequences of bone marrow transplantation in children. J Psychosoc Oncol 1987; 5: 73-81
30. Patenaude AF. Psychological impact of bone marrow transplantation: current perspectives. Yale J Biol Med 1990; 63: 515-519
31. Phipps S, Mulhern RK. Family cohesion and expressiveness promote resilience to the stress of pediatric bone marrow transplant: a preliminary report. J Dev Behav Pediatr 1995; 16: 257-263
32. Vannatta K, Zeller M, Noll RB, Koontz K. Social functioning of children surviving bone marrow transplantation. J Pediatr Psychol 1998; 23: 169-178
33. Bethesda, MD. National Cancer Institute. National Cancer Institute: PDQ® Childhood Hematopoietic Cell Transplantation [NCI Web site]
34. May 2015. Available at http://www.cancer.gov/types/childhood-cancers/child-hct-hp-pdq. Accessed on 17 May 2015
35. Kramer JH, Crittenden MR, DeSantes K, Cowan MJ. Cognitive and adaptive behavior 1 and 3 years following bone marrow transplantation. Bone Marrow Transplant 1997; 19: 607-613
36. Smedler AC, Bolme P. Neuropsychological deficits in very young bone marrow transplant recipients. Acta Paediatr 1995; 84: 429-433
37. Cool VA. Long-term neuropsychological risks in pediatric bone marrow transplant: what do we know? Bone Marrow Transplant 1996; 18: S45-S49
38. Shah AJ, Epport K, Azen C, Killen R, Wilson K, De Clerck D et al. Progressive declines in neurocognitive function among survivors of hematopoietic stem cell transplantation for pediatric hematologic malignancies. J Pediatr Hematol Oncol 2008; 30: 411-418
39. Phipps S, Rai SN, Leung WH, Lensing S, Dunavant M. Cognitive and academic consequences of stem-cell transplantation in children. J Clin Oncol 2008; 26: 2027-2033
40. Willard VW, Leung W, Huang Q, Zhang H, Phipps S. Cognitive outcome after pediatric stem-cell transplantation: impact of age and total-body irradiation. J Clin Oncol 2014; 32: 3982-3988
41. Phipps S, Dunavant M, Srivastava DK, Bowman L, Mulhem RK. Cognitive and academic functioning in survivors of pediatric bone marrow transplantation. J Clin Oncol 2000; 18: 1004-1011
42. Notteghem P, Soler C, Dellatolas G, Kieffer-Renaux V, Valteau-Couanet D, Raimondo G et al. Neuropsychological outcomes in long-term survivors of a childhood extracranial solid tumor who have undergone autologous bone marrow transplantation. Bone Marrow Transplant 2003; 31: 599-606
43. Ness KK, Mertens AC, Hudson MM, Wall MM, Leisenring WM, Oeffinger KC et al. Limitations on physical performance and daily activities among long-term survivors of childhood cancer. Ann Intern Med 2005; 143: 639-647
44. Henrichs MH. Principles of psychosocial oncology. In: Rubin P (ed.). Clinical Oncology. W.B. Saunders: Philadelphia, 1993, pp 159-168
45. Badell I, Igual L, Gomez P, Bureo E, Ortega JJ, Cubells J et al. Quality of life in young adults having received a BMT during childhood: a GETMON study. Bone Marrow Transplant 1998; 21(Suppl 2): S68-S71
46. Boer AG, Verbeek JH, van Dijk FJ. Adult survivors of childhood cancer and unemployment. Cancer 2006; 107: 1-11
47. Shalet SM, Didi M, Oglivy-Stuart AL, Schulga J, Donaldson MD. Growth and endocrine function after bone marrow transplantation. Clin Endocrinol 1995; 42: 333-339
48. Socie G, Salooja N, Cohen A, Rovelli A, Carreras E, Locasciulli A et al. Nonmalignant late effects after allogeneic stem cell transplantation. Blood 2003; 101: 3373-3385
49. Al Fiar FZ, Colwill R, Lipton JH, Fyles G, Spaner D, Messner H. Abnormal thyroid stimulating hormone (TSH) levels in adults following allogeneic bone marrow transplants. Bone Marrow Transplant 1997; 19: 1019-1022
50. Aldouri MA, Ruggier R, Epstein O, Prentice HG. Adoptive transfer of hyperthyroidism and autoimmune thyroiditis following allogeneic bone marrow transplantation for chronic myeloid leukaemia. Br J Haematol 1990; 74: 118-119
51. Sanders JE, Hoffmeister PA, Woolfrey AE, Carpenter PA, Storere BE, Storb RF et al. Thyroid function following hematopoietic cell transplantation in children: 30 years' experience. Blood 2009; 113: 306-308
52. Meignen M, Auquier P, Barlogis V, Sirvent N, Contet A, Simeoni MC et al. Bone mineral density in adult survivors of childhood acute leukemia: impact of hematopoietic stem cell transplantation and other treatment modalities. Blood 2011; 118: 1481-1489
53. Kaste SC, Shidler TJ, Tong X, Srivastava DK, Rochester R, Hudson MM et al. Bone mineral density and osteonecrosis in survivors of childhood allogeneic bone marrow transplantation. Bone Marrow Transplant 2004; 33: 435-441
54. Ruble K, Hayat MJ, Stewart KJ, Chen AR. Bone mineral density after bone marrow transplantation in childhood: measurement and associations. Biol Blood Marrow Transplant 2010; 16: 1451-1457
55. Socie G, Cahn JY, Carmelo J, Vernant JP, Jouet JP, Ifrah N et al. Avascular necrosis of bone after allogeneic bone marrow transplantation: analysis of risk factors for 4388 patients by the Societe Francaise de Greffe de Moelle (SFGM). Br J Haematol 1997; 97: 865-870
56. Sanders JE, Pritchard S, Mahoney P, Amos D, Buckner CD, Witherspoon RP. Growth and development following marrow transplantation for leukemia. Blood 1986; 68: 1129-1135
57. Sklar C, Mertens A, Walter A, Mitchell D, Nesbit M, O'Leary M et al. Final height after treatment for childhood acute lymphoblastic leukemia: comparison of no cranial irradiation with 1800 and 2400 centigrays of cranial irradiation. J Pediatr 1993; 123: 59-64
58. Borgmann-Staudt A, Rendtorff R, Reinmuth S, Hohmann C, Keil T, Schuster FR et al. Fertility after allogeneic haematopoietic stem cell transplantation in childhood and adolescence. Bone Marrow Transplant 2012; 47: 271-276
59. Howell S, Shalet S. Gonadal damage from chemotherapy and radiotherapy. Endocrinol Metab Clin North Am 1998; 27: 927-943
60. Meirow D, Nugent D. The effects of radiotherapy and chemotherapy on female reproduction. Hum Reprod Update 2001; 7: 535-543
61. Thibaud E, Rodriguez-Macias K, Trivin C, Esperou H, Michon J, Brauner R. Ovarian function after bone marrow transplantation during childhood. Bone Marrow Transplant 1998; 21: 287-290
62. Bakker B, Massa GG, Oostdijk W, Van Weel-Sipman MH, Vossen JM, Wit JM. Pubertal development and growth after total-body irradiation and bone marrow transplantation for haematological malignancies. Eur J Pediatr 2000; 159: 31-37
63. Bastings L, Baysal O, Beerendonk CC, Braat DD, Nelen WL. Referral for fertility preservation counselling in female cancer patients. Hum Reprod 2014; 29: 2228-2237
64. Quinn GP, Vadaparampil ST. Fertility preservation and adolescent/young adult cancer patients: physician communication challenges. J Adolesc Health 2009; 44: 394-400
65. Goodwin T, Elizabeth Oosterhuis B, Kiernan M, Hudson MM, Dahl GV. Attitudes and practices of pediatric oncology providers regarding fertility issues. Pediatr Blood Cancer 2007; 48: 80-85
66. Kohler TS, Kondapalli LA, Shah A, Chan S, Woodruff TK, Brannigan RE. Results from the survey for preservation of adolescent reproduction (SPARE) study: gender disparity in delivery of fertility preservation message to adolescents with cancer. J Assist Reprod Genet 2011; 28: 269-277
67. Grifo JA, Noyes N. Delivery rate using cryopreserved oocytes is comparable to conventional in vitro fertilization using fresh oocytes: potential fertility preservation for female cancer patients. Fertil Steril 2010; 93: 391-396
68. Jain JK, Paulson RJ. Oocyte cryopreservation. Fertil Steril 2006; 86(4 Suppl): 1037-1046
69. Lee SJ, Schover LR, Partridge AH, Patrizio P, Wallace WH, Hagerty K et al. American Society of Clinical Oncology recommendations on fertility preservation in cancer patients. J Clin Oncol 2006; 24: 2917-2931
70. Rosen A. Third-party reproduction and adoption in cancer patients. J Natl Cancer Inst Monogr 2005; 34: 91-93
71. Gilman L. The Adoption Resource Book. Harper Perennial: New York, NY, 1998
72. Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions: a position paper of the Society for Adolescent Medicine. J Adolesc Health 1993; 14: 570-576
73. Wojciechowski EA, Hurtig A, Dorn L. A natural history study of adolescents and young adults with sickle cell disease as they transfer to adult care: a need for case management services. J Pediatr Nurs 2002; 17: 18-27
74. McPherson M, Thaniel L, Minniti CP. Transition of patients with sickle cell disease from pediatric to adult care: assessing patient readiness. Pediatr Blood Cancer 2009; 52: 838-841
75. Quinn CT, Rogers ZR, McCavit TL, Buchanan GR. Improved survival of children and adolescents with sickle cell disease. Blood 2010; 115: 3447-3452
76. American Academy of Pediatrics, American Academy of Family Physicians and American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002; 110(6 Pt 2): 1304-1306
77. Ozer EM, Urquhart JT, Brindis CD, Park MJ, Irwin CE Jr. Young adult preventive health care guidelines: there but can't be found. Arch Pediatr Adolesc Med 2012; 166: 240-247
78. US Preventive Services Task Force. Information for Health Professionals (US Preventative Serves Task Force website). December 2014. Available at http://www.uspreventiveservicestaskforce.org/Page/Name/tools-and-resourcesfor-better-preventive-care. Accessed on 2 May 2015
79. Majhail NS, Rizzo JD, Lee SJ, Aljurf M, Atsuta Y, Bonfim C et al. Recommended screening and preventive practices for long-term survivors after hematopoietic cell transplantation. Bone Marrow Transplant 2012; 47: 337-341
80. Khera N, Zeliadt SB, Lee SJ. Economics of hematopoietic cell transplantation. Blood 2012; 120: 1545-1551
81. Majhail NS, Mau LW, Denzen EM, Ameson TJ. Costs of autologous and allogeneic hematopoietic cell transplantation in the United States: a study using a large national private claims database. Bone Marrow Transplant 2013; 48: 294-300
82. Khera N, Emmert A, Storer BE. Costs of allogeneic hematopoietic cell transplantation using reduced intensity conditioning regimens. Oncologist 2014; 19: 639-644
83. Bona K, London WB, Guo D, Abel G, Lehmann L, Wolfe J. Prevalence and impact of financial hardship among New England pediatric stem cell transplantation families. Biol Blood Marrow Transplant 2015; 21: 312-318
84. Park ER, Kirchhoff AC, Perez CK, Leisenring W, Weissman JS, Donelan K. Childhood Cancer Survivor Study participants' perceptions and understanding of the Affordable Care Act. J Clin Oncol 2015; 33: 764-772
85. Assistant Secretary of Public Affairs-Digital Communications Division. Key Features of the Affordable Care Act (US Dept of Health and Human Services website). November 18 2014. Available at http://www.hhs.gov/healthcare/facts/timeline/ index.html. Accessed on 05 May 2015
86. Farnia S, Gedan A, Boo M. Impact of the Affordable Care Act on stem cell transplantation. Curr Hematol Malig Rep 2014; 9: 66-72