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Published in: Supportive Care in Cancer 6/2009

Open Access 01-06-2009 | Original Article

Child and parental adaptation to pediatric stem cell transplantation

Authors: C. M. Jantien Vrijmoet-Wiersma, Annemarie M. Kolk, Martha A. Grootenhuis, Emmelien M. Spek, Jeanine M. M. van Klink, R. Maarten Egeler, Robbert G. M. Bredius, Hendrik M. Koopman

Published in: Supportive Care in Cancer | Issue 6/2009

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Abstract

Goals of work

Allogeneic pediatric stem cell transplantation (SCT) is a very intensive treatment with a high mortality and morbidity. The objectives of this study were to assess the (1) self- and proxy-reported health-related quality of life (HRQoL) compared to a norm group, (2) levels of parenting stress compared to a norm group, (3) differences in HRQoL and parenting stress pre- and post-SCT, and (4) effect of child age and parenting stress on self- and proxy-reported HRQoL pre- and post-SCT.

Materials and methods

Pre- and on average 10 months post-SCT, 21 children and adolescents and their parent(s) completed questionnaires on HRQoL and the mothers completed a measure of parenting stress.

Main results

Post-SCT, home functioning, physical functioning, and total HRQoL scores were lower than the norm group. We found stable HRQoL scores over time with the exception of the domain home functioning, which was rated lower post-SCT than pre-SCT. Parents reported lower HRQoL scores than the children pre- and post-SCT and younger children experienced better HRQoL than older children. Parenting stress was higher post-SCT than pre-SCT and high levels of parenting stress were predictive of poor parental ratings of child HRQoL post-SCT.

Conclusions

Ongoing psychosocial assessment post-SCT is necessary to target children with a lowered HRQoL and parents who experience elevated parenting stress who may be in greater need of more supportive care.
Literature
1.
go back to reference Abidin RR (1995) Parenting stress index, 3rd edn. Psychological Assessment Resources, Odessa, FL Abidin RR (1995) Parenting stress index, 3rd edn. Psychological Assessment Resources, Odessa, FL
2.
go back to reference Andrykowski MAA, Bishop MM, Hahn EA, Cella DF, Beaumont JL, Brady MJ et al (2005) Long-term health-related quality of life, growth, and spiritual well-being after hematopoietic stem-cell transplantation. J Clin Oncol 23(3):599–608 doi:10.1200/JCO.2005.03.189 PubMedCrossRef Andrykowski MAA, Bishop MM, Hahn EA, Cella DF, Beaumont JL, Brady MJ et al (2005) Long-term health-related quality of life, growth, and spiritual well-being after hematopoietic stem-cell transplantation. J Clin Oncol 23(3):599–608 doi:10.​1200/​JCO.​2005.​03.​189 PubMedCrossRef
3.
go back to reference Badell I, Igual L, Gomez P, Bureo E, Ortega JJ, Muñoz A et al (1998) Quality of life in young adults having received a BMT during childhood: a GETMON study. Grupo Español de Trasplante de Médula Osea en el Niño. Bone Marrow Transplant 21(Suppl. 2):S68–S71PubMed Badell I, Igual L, Gomez P, Bureo E, Ortega JJ, Muñoz A et al (1998) Quality of life in young adults having received a BMT during childhood: a GETMON study. Grupo Español de Trasplante de Médula Osea en el Niño. Bone Marrow Transplant 21(Suppl. 2):S68–S71PubMed
4.
go back to reference Baker F, Wingard JR, Curbow BA, Zabora J, Jodrey D, Fogarty L et al (1994) Quality of life of bone marrow transplant long-term survivors. Bone Marrow Transplant 13(5):589–596PubMed Baker F, Wingard JR, Curbow BA, Zabora J, Jodrey D, Fogarty L et al (1994) Quality of life of bone marrow transplant long-term survivors. Bone Marrow Transplant 13(5):589–596PubMed
8.
go back to reference Brock de AJLL, Vermulst AA, Gerris JRM, Abidin RR (1992) Handleiding Nijmeegse Ouderlijke Stress Index. Swets & Zeitlinger, Lisse Brock de AJLL, Vermulst AA, Gerris JRM, Abidin RR (1992) Handleiding Nijmeegse Ouderlijke Stress Index. Swets & Zeitlinger, Lisse
10.
12.
go back to reference Cremeens J, Eiser C, Blades M (2006) Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life InventoryTM 4.0 (PedsQLTM) generic core scales. Health Qual Life Outcomes 4(1):58 doi:10.1186/1477-7525-4-58 PubMedCrossRef Cremeens J, Eiser C, Blades M (2006) Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life InventoryTM 4.0 (PedsQLTM) generic core scales. Health Qual Life Outcomes 4(1):58 doi:10.​1186/​1477-7525-4-58 PubMedCrossRef
13.
go back to reference Davis E, Davies B, Waters E, Priest N (2008) The relationship between proxy reported health-related quality of life and parental distress: gender differences. Child Care Health Dev 36(6):830–837 Davis E, Davies B, Waters E, Priest N (2008) The relationship between proxy reported health-related quality of life and parental distress: gender differences. Child Care Health Dev 36(6):830–837
15.
go back to reference Felder-Puig R, di Gallo A, Waldenmair M, Norden P, Winter A, Gadner H et al (2006) 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 38(2):119–126 doi:10.1038/sj.bmt.1705417 PubMedCrossRef Felder-Puig R, di Gallo A, Waldenmair M, Norden P, Winter A, Gadner H et al (2006) 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 38(2):119–126 doi:10.​1038/​sj.​bmt.​1705417 PubMedCrossRef
19.
20.
go back to reference Kanabar DJ, Attard-Montalto S, Saha V, Kingston JE, Malpas JE, Eden OB (1995) Quality of life in survivors of childhood cancer after megatherapy with autologous bone marrow rescue. Pediatr Hematol Oncol 12(1):29–36 doi:10.3109/08880019509029525 PubMedCrossRef Kanabar DJ, Attard-Montalto S, Saha V, Kingston JE, Malpas JE, Eden OB (1995) Quality of life in survivors of childhood cancer after megatherapy with autologous bone marrow rescue. Pediatr Hematol Oncol 12(1):29–36 doi:10.​3109/​0888001950902952​5 PubMedCrossRef
22.
go back to reference Koopman HM, Theunissen NCM, Vogels AGC, Kamphuis RP, Verrips GH (1998) The DUC-25: a short-form questionnaire for measuring health related quality of life of children with a chronic illness. Qual Life Res 7(7):619 Koopman HM, Theunissen NCM, Vogels AGC, Kamphuis RP, Verrips GH (1998) The DUC-25: a short-form questionnaire for measuring health related quality of life of children with a chronic illness. Qual Life Res 7(7):619
23.
go back to reference Levi RB, Drotar D (1999) Health-related quality of life in childhood cancer: discrepancy in parent–child reports. Int J Cancer Suppl s12:58–64CrossRef Levi RB, Drotar D (1999) Health-related quality of life in childhood cancer: discrepancy in parent–child reports. Int J Cancer Suppl s12:58–64CrossRef
25.
go back to reference Manne S, DuHamel K, Ostroff J, Parsons S, Martini DR, Williams SE et al (2004) Anxiety, depressive, and posttraumatic stress disorders among mothers of pediatric survivors of hematopoietic stem cell transplantation. Pediatrics 113(6):1700–1708 doi:10.1542/peds.113.6.1700 PubMedCrossRef Manne S, DuHamel K, Ostroff J, Parsons S, Martini DR, Williams SE et al (2004) Anxiety, depressive, and posttraumatic stress disorders among mothers of pediatric survivors of hematopoietic stem cell transplantation. Pediatrics 113(6):1700–1708 doi:10.​1542/​peds.​113.​6.​1700 PubMedCrossRef
26.
go back to reference Manne S, DuHamel K, Winkel G, Ostroff J, Parsons S, Martini R et al (2003) Perceived partner critical and avoidant behaviors as predictors of anxious and depressive symptoms among mothers of children undergoing hematopoietic stem cell transplantation. J Consult Clin Psychol 71(6):1076–1083 doi:10.1037/0022-006X.71.6.1076 PubMedCrossRef Manne S, DuHamel K, Winkel G, Ostroff J, Parsons S, Martini R et al (2003) Perceived partner critical and avoidant behaviors as predictors of anxious and depressive symptoms among mothers of children undergoing hematopoietic stem cell transplantation. J Consult Clin Psychol 71(6):1076–1083 doi:10.​1037/​0022-006X.​71.​6.​1076 PubMedCrossRef
28.
go back to reference Matthes-Martin SLM, Ladenstein R, Emminger W, Felsberger C, Topf R, Gadner H et al (1999) Organ toxicity and quality of life after allogeneic bone marrow transplantation in pediatric patients: a single center retrospective analysis. Bone Marrow Transplant 23(10):1049–1053 doi:10.1038/sj.bmt.1701754 PubMedCrossRef Matthes-Martin SLM, Ladenstein R, Emminger W, Felsberger C, Topf R, Gadner H et al (1999) Organ toxicity and quality of life after allogeneic bone marrow transplantation in pediatric patients: a single center retrospective analysis. Bone Marrow Transplant 23(10):1049–1053 doi:10.​1038/​sj.​bmt.​1701754 PubMedCrossRef
29.
go back to reference McQuellon RP, Russell GB, Rambo TD, Craven BL, Radford J, Perry JJ et al (1998) Quality of life and psychological distress of bone marrow transplant recipients: the ‘time trajectory’ to recovery over the first year. Bone Marrow Transplant 21(5):477–486 doi:10.1038/sj.bmt.1701115 PubMedCrossRef McQuellon RP, Russell GB, Rambo TD, Craven BL, Radford J, Perry JJ et al (1998) Quality of life and psychological distress of bone marrow transplant recipients: the ‘time trajectory’ to recovery over the first year. Bone Marrow Transplant 21(5):477–486 doi:10.​1038/​sj.​bmt.​1701115 PubMedCrossRef
30.
32.
go back to reference Parsons SK, Barlowe SE, Levy SL, Supran SE, Kaplan SH (1999) Health-related quality of life in pediatric bone marrow transplant survivors: according to whom. Int J Cancer Suppl s12:46–51CrossRef Parsons SK, Barlowe SE, Levy SL, Supran SE, Kaplan SH (1999) Health-related quality of life in pediatric bone marrow transplant survivors: according to whom. Int J Cancer Suppl s12:46–51CrossRef
33.
go back to reference Parsons SK, Shih MC, DuHamel KN, Ostroff J, Mayer DK, Austin J et al (2005) Maternal perspectives on children’s health-related quality of life during the first year after pediatric hematopoietic stem cell transplant. J Pediatr Psychol 31(10):1100–1115 doi:10.1093/jpepsy/jsj078 PubMedCrossRef Parsons SK, Shih MC, DuHamel KN, Ostroff J, Mayer DK, Austin J et al (2005) Maternal perspectives on children’s health-related quality of life during the first year after pediatric hematopoietic stem cell transplant. J Pediatr Psychol 31(10):1100–1115 doi:10.​1093/​jpepsy/​jsj078 PubMedCrossRef
35.
go back to reference Phipps S, Dunavant M, Lensing S, Rai SN (2002) Acute health-related quality of life in children undergoing stem cell transplant: II. Medical and demographic determinants. Bone Marrow Transplant 29(5):435–442 doi:10.1038/sj.bmt.1703376 PubMedCrossRef Phipps S, Dunavant M, Lensing S, Rai SN (2002) Acute health-related quality of life in children undergoing stem cell transplant: II. Medical and demographic determinants. Bone Marrow Transplant 29(5):435–442 doi:10.​1038/​sj.​bmt.​1703376 PubMedCrossRef
35.
39.
go back to reference Streisand R, Rodrigue JR, Houck C, Graham-Pole J, Berlant N (2000) Brief report: parents of children undergoing bone marrow transplantation: documenting stress and piloting a psychological intervention program. J Pediatr Psychol 25(5):331–337 doi:10.1093/jpepsy/25.5.331 PubMedCrossRef Streisand R, Rodrigue JR, Houck C, Graham-Pole J, Berlant N (2000) Brief report: parents of children undergoing bone marrow transplantation: documenting stress and piloting a psychological intervention program. J Pediatr Psychol 25(5):331–337 doi:10.​1093/​jpepsy/​25.​5.​331 PubMedCrossRef
40.
go back to reference Sutherland HJ, Fyles GM, Adams G, Hao Y, Lipton JH, Minden MD et al (1997) Quality of life following bone marrow transplantation: a comparison of patient report with population norms. Bone Marrow Transplant 19(11):1129–1136 doi:10.1038/sj.bmt.1700806 PubMedCrossRef Sutherland HJ, Fyles GM, Adams G, Hao Y, Lipton JH, Minden MD et al (1997) Quality of life following bone marrow transplantation: a comparison of patient report with population norms. Bone Marrow Transplant 19(11):1129–1136 doi:10.​1038/​sj.​bmt.​1700806 PubMedCrossRef
41.
go back to reference Theunissen NCM, Vogels TGC, Koopman HM, Verrips GH, Zwinderman KA, Verloove-Vanhorick SP et al (1998) The proxy problem: child report versus parent report in health-related quality of life research. Qual Life Res 7(5):387–397 doi:10.1023/A:1008801802877 PubMedCrossRef Theunissen NCM, Vogels TGC, Koopman HM, Verrips GH, Zwinderman KA, Verloove-Vanhorick SP et al (1998) The proxy problem: child report versus parent report in health-related quality of life research. Qual Life Res 7(5):387–397 doi:10.​1023/​A:​1008801802877 PubMedCrossRef
Metadata
Title
Child and parental adaptation to pediatric stem cell transplantation
Authors
C. M. Jantien Vrijmoet-Wiersma
Annemarie M. Kolk
Martha A. Grootenhuis
Emmelien M. Spek
Jeanine M. M. van Klink
R. Maarten Egeler
Robbert G. M. Bredius
Hendrik M. Koopman
Publication date
01-06-2009
Publisher
Springer-Verlag
Published in
Supportive Care in Cancer / Issue 6/2009
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-008-0544-8

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