NCI, NHLBI/PBMTC First International Conference onLate Effects after Pediatric Hematopoietic Cell Transplantation: Health-Related Quality of Life, Functional, and Neurocognitive Outcomes

Biology of Blood and Marrow Transplantation

Volumn 18, Issue 2, 2012, Pages 162-171

  Parsons, Susan K ^a   Phipps, Sean ^b   Sung, Lillian ^c   Baker, K Scott ^d   Pulsipher, Michael A ^e   Ness, Kirsten K ^b  

^a TUFTS MEDICAL CENTER   (United States)

^b ST JUDE CHILDREN S RESEARCH HOSPITAL   (United States)

^c HOSPITAL FOR SICK CHILDREN   (Canada)

^d Fred Hutchinson Cancer Research Center   (United States)

^e UNIVERSITY OF UTAH SCHOOL OF MEDICINE   (United States)

Author keywords

Functional outcomes; Health related quality of life; Late effects; Neurocognitive outcomes; Pediatric allogeneic transplantation; Pediatric autologous transplantation

Indexed keywords

ARTICLE; CHILDHOOD; CHRONIC DISEASE; COGNITION; CROSS-SECTIONAL STUDY; DISABILITY; GRAFT RECIPIENT; GRAFT VERSUS HOST REACTION; HEMATOPOIETIC STEM CELL TRANSPLANTATION; HUMAN; LONG TERM SURVIVAL; LONGITUDINAL STUDY; MORTALITY; PHYSICAL PERFORMANCE; PREDICTION; QUALITY OF LIFE; QUESTIONNAIRE; SCREENING; SELF REPORT; SURVIVOR; TREATMENT OUTCOME;

ADOLESCENT; ADULT; CHILD; CHILD, PRESCHOOL; COGNITION; CONGRESSES AS TOPIC; FEMALE; HEMATOPOIETIC STEM CELL TRANSPLANTATION; HUMANS; MALE; NATIONAL CANCER INSTITUTE (U.S.); QUALITY OF LIFE; SURVIVORS; TIME FACTORS; TRANSPLANTATION, HOMOLOGOUS; UNITED STATES;

EID: 84855572843     PISSN: 10838791     EISSN: 15236536     Source Type: Journal    
DOI: 10.1016/j.bbmt.2011.12.501     Document Type: Article

References (75)

1. World Health Organization Constitution 1948, World Health Organization, World Health Organization, Geneva, Switzerland.
2. Gill T.M., Feinstein A.R. A critical appraisal of the quality of quality-of-life measurements. JAMA 1994, 272:619-626.
3. Wilson I.B., Cleary P.D. Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA 1995, 273:59-65.
4. Eisen M.D.C., Ware J.E., Brook R. Conceptualization and Measurement of Health for Children in the Health Insurance Study 1990, Rand Publication, Santa Monica, CA.
5. Parsons S.K., Shih M.C., Duhamel K.N., et al. Maternal perspectives on children's health-related quality of life during the first year after pediatric hematopoietic stem cell transplant. J Pediatr Psychol 2006, 31:1100-1115.
6. Varni J.W., Seid M., Kurtin P.S. PedsQL 4.0: Reliability and VALIDITY OF THE PEDIATRIC Quality of Life Inventory, version 4.0 generic core scales in healthy and patient populations. Med Care 2001, 39:800-812.
7. The CHQ: A User's Manual 1996, The Health Institute, Boston, MA. 1st ed. J.M. Landgraf, L. Abetz, J.E. Ware (Eds.).
8. Kaplan S.H., Barlow S., Spetter D., et al. Assessing functional status and health-related quality of life among school-aged children: reliability and validity of a new self-reported measure. Qual Life Res 1995, 4:444-445.
9. Parsons S.K., Barlow S.E., Levy S.L., Supran S.E., Kaplan S.H. Health-related quality of life in pediatric bone marrow transplant survivors: according to whom?. Int J Cancer Suppl 1999, 12:46-51.
10. Parsons S.K., Shih M.C., Mayer D.K., et al. Preliminary psychometric evaluation of the Child Health Ratings Inventory (CHRIs) and Disease-Specific Impairment Inventory-Hematopoietic Stem Cell Transplantation (DSII-HSCT) in parents and children. Qual Life Res 2005, 14:1613-1625.
11. Feeny D., Furlong W., Barr R.D., et al. A comprehensive multiattribute system for classifying the health status of survivors of childhood cancer. J Clin Oncol 1992, 10:923-928.
12. Pavletic S.Z., Martin P., Lee S.J., et al. Measuring therapeutic response in chronic graft-versus-host disease: National Institutes of Health Consensus Development Project on Criteria for Clinical Trials in Chronic Graft-versus-Host Disease: IV. Response Criteria Working Group report. Biol Blood Marrow Transplant 2006, 12:252-266.
13. Barrera M., Boyd-Pringle L.A., Sumbler K., Saunders F. Quality of life and behavioral adjustment after pediatric bone marrow transplantation. Bone Marrow Transplant 2000, 26:427-435.
14. Barrera M., Atenafu E., Hancock K. Longitudinal health-related quality of life outcomes and related factors after pediatric SCT. Bone Marrow Transplant 2009, 44:249-256.
15. Jobe-Shields L., Alderfer M.A., Barrera M., et al. Parental depression and family environment predict distress in children before stem cell transplantation. J Dev Behav Pediatr 2009, 30:140-146.
16. Vrijmoet-Wiersma C.M., Kolk A.M., Grootenhuis M.A., et al. Child and parental adaptation to pediatric stem cell transplantation. Support Care Cancer 2009, 17:707-714.
17. Felder-Puig R., di Gallo A., Waldenmair M., et al. Health-related quality of life of pediatric patients receiving allogeneic stem cell or bone marrow transplantation: results of a longitudinal, multi-center study. Bone Marrow Transplant 2006, 38:119-126.
18. Parsons S., Terrin N., Ratichek S., et al. Trajectories of HRQL following Pediatric Hematopoietic Stem Cell Transplantation (HSCT). QLR J 2009, Abstract #1420.
19. Parsons S., Ratichek S., Rodday A., et al. Caring for the caregiver: EHealth interventions for parents of pediatric hematopoietic stem cell transplant recipients. Abstract from the SIOP-psychosocial oncology (SIOP-PPO) meeting, October 21, 2011. Pediatr Blood Cancer 2011, 56:1159.
20. Brice L., Weiss R., Wei Y., et al. Health-related quality of life (HRQoL): the impact of medical and demographic variables upon pediatric recipients of hematopoietic stem cell transplantation. Pediatr Blood Cancer 2011 Apr 21, [Epub ahead of print].
21. Barrera M., Atenafu E., Doyle J., Berlin-Romalis D., Hancock K. Differences in mothers' and fathers' health-related quality of life after pediatric SCT: a longitudinal study. Bone Marrow Transplant 2011 Sep 26, [Epub ahead of print].
22. Feichtl R.E., Rosenfeld B., Tallamy B., Cairo M.S., Sands S.A. Concordance of quality of life assessments following pediatric hematopoietic stem cell transplantation. Psychooncology 2010, 19:710-717.
23. Terrin N., Rodday A., Weidner R., Parsons S. Clinical reports ignore non-ignorable missing data. Under editorial review 2009.
24. Clarke S.A., Eiser C., Skinner R. Health-related quality of life in survivors of BMT for paediatric malignancy: a systematic review of the literature. Bone Marrow Transplant 2008, 42:73-82.
25. Forinder U., Lof C., Winiarski J. Quality of life following allogeneic stem cell transplantation, comparing parents' and children's perspective. Pediatr Transplant 2006, 10:491-496.
26. Lof C.M., Winiarski J., Giesecke A., Ljungman P., Forinder U. Health-related quality of life in adult survivors after paediatric allo-SCT. Bone Marrow Transplant 2009, 43:461-468.
27. Sanders J.E., Hoffmeister P.A., Storer B.E., et al. The quality of life of adult survivors of childhood hematopoietic cell transplant. Bone Marrow Transplant 2010, 45:746-754.
28. Baker K.S., Bresters D., Sande J.E. The burden of cure: long-term side effects following hematopoietic stem cell transplantation (HSCT) in children. Pediatr Clin North Am 2010, 57:323-342.
29. Morone J., Mayer D., Parsons S. Computer animation in health related quality of life (HRQL) assessment using the Child Health Rating Inventories (CHRIs©). PRONewslett 2006, 5-8.
30. The KIDSCREEN Questionnaires-Quality of Life Questionnaires for Children and Adolescents. Handbook 2006, The KIDSCREEN Group Europe, Pabst Science Publishers, Lengerich.
31. Bresters D., van Gils I.C., Kollen W.J., et al. High burden of late effects after haematopoietic stem cell transplantation in childhood: a single-centre study. Bone Marrow Transplant 2010, 45:79-85.
32. Duell T., van Lint M.T., Ljungman P., et al. Health and functional status of long-term survivors of bone marrow transplantation. EBMT Working Party on Late Effects and EULEP Study Group on Late Effects. European Group for Blood and Marrow Transplantation. Ann Intern Med 1997, 126:184-192.
33. Ness K.K., Bhatia S., Baker K.S., et al. Performance limitations and participation restrictions among childhood cancer survivors treated with hematopoietic stem cell transplantation: the bone marrow transplant survivor study. Arch Pediatr Adolesc Med 2005, 159:706-713.
34. Eames G.M., Crosson J., Steinberger J., et al. Cardiovascular function in children following bone marrow transplant: a cross-sectional study. Bone Marrow Transplant 1997, 19:61-66.
35. Larsen R.L., Barber G., Heise C.T., August C.S. Exercise assessment of cardiac function in children and young adults before and after bone marrow transplantation. Pediatrics 1992, 89(Pt 2):722-729.
36. Schmidt G.M., Niland J.C., Forman S.J., et al. Extended follow-up in 212 long-term allogeneic bone marrow transplant survivors. Issues of quality of life. Transplantation 1993, 55:551-557.
37. Hogarty A.N., Leahey A., Zhao H., et al. Longitudinal evaluation of cardiopulmonary performance during exercise after bone marrow transplantation in children. J Pediatr 2000, 136:311-317.
38. Hovi L., Kurimo M., Taskinen M., et al. Suboptimal long-term physical performance in children and young adults after pediatric allo-SCT. Bone Marrow Transplant 2010, 45:738-745.
39. Khera N., Chow E.J., Leisenring W.M., et al. Factors associated with adherence to preventive care practices among hematopoietic cell transplantation survivors. Biol Blood Marrow Transplant 2011, 17:995-1003.
40. Sasaki H., Kasagi F., Yamada M., Fujita S. Grip strength predicts cause-specific mortality in middle-aged and elderly persons. Am J Med 2007, 120:337-342.
41. Kokkinos P., Myers J., Kokkinos J.P., et al. Exercise capacity and mortality in black and white men. Circulation 2008, 117:614-622.
42. Mora S., Redberg R.F., Cui Y., et al. Ability of exercise testing to predict cardiovascular and all-cause death in asymptomatic women: a 20-year follow-up of the lipid research clinics prevalence study. JAMA 2003, 290:1600-1607.
43. Helder D.I., Bakker B., de Heer P., et al. Quality of life in adults following bone marrow transplantation during childhood. Bone Marrow Transplant 2004, 33:329-436.
44. Michel G., Bordigoni P., Simeoni M.C., et al. Health status and quality of life in long-term survivors of childhood leukaemia: the impact of haematopoietic stem cell transplantation. Bone Marrow Transplant 2007, 40:897-904.
45. Fraser C.J., Bhatia S., Ness K., et al. Impact of chronic graft-versus-host disease on the health status of hematopoietic cell transplantation survivors: a report from the Bone Marrow Transplant Survivor Study. Blood 2006, 108:2867-2873.
46. Principles and Practices of Pediatric Oncology 2006, Lippincott Williams & Wilkins, Philadelphia, PA. 5th ed. P.A. Pizzo, D.G. Poplack (Eds.).
47. Clinical Bone Marrow and Blood Stem Cell Transplantation 2000, Cambridge University Press, New York. 2nd ed. K. Atkinson (Ed.).
48. Chou R.H., Wong G.B., Kramer J.H., et al. Toxicities of total-body irradiation for pediatric bone marrow transplantation. Int J Radiat Oncol Biol Phys 1996, 34:843-851.
49. Miale T.D., Sirithorn S., Ahmed S. Efficacy and toxicity of radiation in preparative regimens for pediatric stem cell transplantation. I: Clinical applications and therapeutic effects. Med Oncol 1995, 12:231-249.
50. Coley S.C., Porter D.A., Calamante F., Chong W.K., Connelly A. Quantitative MR diffusion mapping and cyclosporine-induced neurotoxicity. AJNR Am J Neuroradiol 1999, 20:1507-1510.
51. Padovan C.S., Gerbitz A., Sostak P., et al. Cerebral involvement in graft-versus-host disease after murine bone marrow transplantation. Neurology 2001, 56:1106-1108.
52. Rouah E., Gruber R., Shearer W., Armstrong D., Hawkins E.P. Graft-versus-host disease in the central nervous system. A real entity?. Am J Clin Pathol 1988, 89:543-546.
53. Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease 2006, Oxford University Press, New York. R.T. Brown (Ed.).
54. Cool V.A. Long-term neuropsychological risks in pediatric bone marrow transplant: what do we know?. Bone Marrow Transplant 1996, 18(Suppl 3):S45-S49.
55. Kramer J.H., Crittenden M.R., DeSantes K., Cowan M.J. Cognitive and adaptive behavior 1 and 3 years following bone marrow transplantation. Bone Marrow Transplant 1997, 19:607-613.
56. Kramer J.H., Crittenden M.R., Halberg F.E., Wara W.M., Cowan M.J. A prospective study of cognitive functioning following low-dose cranial radiation for bone marrow transplantation. Pediatrics 1992, 90:447-450.
57. Shah A.J., Epport K., Azen C., 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.
58. Smedler A.C., Bolme P. Neuropsychological deficits in very young bone marrow transplant recipients. Acta Paediatr 1995, 84:429-433.
59. Smedler A.C., Winiarski J. Neuropsychological outcome in very young hematopoietic SCT recipients in relation to pretransplant conditioning. Bone Marrow Transplant 2008, 42:515-522.
60. Arvidson J., Kihlgren M., Hall C., Lonnerholm G. Neuropsychological functioning after treatment for hematological malignancies in childhood, including autologous bone marrow transplantation. Pediatr Hematol Oncol 1999, 16:9-21.
61. Barrera M., Atenafu E. Cognitive, educational, psychosocial adjustment and quality of life of children who survive hematopoietic SCT and their siblings. Bone Marrow Transplant 2008, 42:15-21.
62. Kupst M.J., Penati B., Debban B., et al. Cognitive and psychosocial functioning of pediatric hematopoietic stem cell transplant patients: a prospective longitudinal study. Bone Marrow Transplant 2002, 30:609-617.
63. Llach D.M., Campdepadros P.M., Ceballos B.N., et al. Secuelas neuropsicologicas a medio y largo plazo del trasplante de medula osea en pacientes con enfermedades heamtologicas. Anal Pediatr 2001, 54:463-467.
64. Phipps S., Brenner M., Heslop H., et al. Psychological effects of bone marrow transplantation on children and adolescents: preliminary report of a longitudinal study. Bone Marrow Transplant 1995, 15:829-835.
65. Phipps S., Dunavant M., Srivastava D.K., Bowman L., Mulhern R.K. Cognitive and academic functioning in survivors of pediatric bone marrow transplantation. J Clin Oncol 2000, 18:1004-1011.
66. Phipps S., Rai S.N., Leung W.H., Lensing S., Dunavant M. Cognitive and academic consequences of stem-cell transplantation in children. J Clin Oncol 2008, 26:2027-2033.
67. Pot-Mees C. The Psychological Aspects of Bone Marrow Transplantation in Children 1989, John Wiley, The Netherlands.
68. Simms S., Kazak A.E., Golomb V., Goldwein J., Bunin N. Cognitive, behavioral, and social outcome in survivors of childhood stem cell transplantation. J Pediatr Hematol Oncol 2002, 24:115-119.
69. Gragert M.N., Ris M.D. Neuropsychological late effects and rehabilitation following pediatric brain tumor. J Pediatr Rehabil Med 2011, 4:47-58.
70. Reddick W.E., Conklin H.M. Impact of acute lymphoblastic leukemia therapy on attention and working memory in children. Expert Rev Hematol 2010, 3:655-659.
71. Butler R.W., Copeland D.R., Fairclough D.L., et al. A multicenter, randomized clinical trial of a cognitive remediation program for childhood survivors of a pediatric malignancy. J Consult Clin Psychol 2008, 76:367-378.
72. Conklin H.M., Reddick W.E., Ashford J., et al. Long-term efficacy of methylphenidate in enhancing attention regulation, social skills, and academic abilities of childhood cancer survivors. J Clin Oncol 2010, 28:4465-4472.
73. Hardy K.K., Willard V.W., Bonner M.J. Computerized cognitive training in survivors of childhood cancer: a pilot study. J Pediatr Oncol Nurs 2011, 28:27-33.
74. Reynolds C.R., Kamphaus R.W. Behavior Assessment System for Children (BASC) 1992, American Guidance Service, Circle Pines, MN.
75. Gioia G.A., Isquith P.K., Guy S.C., Kenworthy L. Behavior Rating Inventory of Executive Function (BRIEF) 2000, Psychological Assessment Resources, Odessa, FL.