The purpose of this study is to examine the self-reported and parent-reported health-related quality of life (HRQoL) of children (age < 19 years) who received a hematopoietic (bone marrow, cord blood, or peripheral blood) stem cell transplant (SCT) at the University of Nebraska Medical Center (UNMC). A total of 35 families participated: 31 SCT recipients, 35 mothers, and 28 fathers. Mean scores were 73.6 child, 71.2 mothers, and 76.2 fathers (range of 0-100, with high scores indicating better HRQoL). No significant overall HRQoL difference between parent and child were reported. Mothers reported significantly lower physical functioning (F2,23 = 3.509, P = .041) compared to child (P = .041) and fathers (P = .025). Older age at time of transplant was associated with higher procedural anxiety according to child (r = .498, P = .005) and mothers (r = .466, P = .008). Older age at time of transplant was associated with less worry according to fathers (r = -.589, P = .002). Overall, SCT recipients and their parents report moderately high HRQoL.
Asch, D. A., Jedrziewski, M. K., & Christakis, N. A. (1997). Response rates to mail surveys published in medical journals. Journal of Clinical Epidemiology, 50(10), 1129-1136.
2.
Badell, I., Igual, L., Gomez, P., Bureo, E., Ortega, J. J., Cubells, J., et al. (1998). Quality of life in young adults having received a BMT during childhood: A GETMON study. Bone Marrow Transplantation, 21, S68-S71.
3.
Baker, F., Wingard, J. R., Curbow, B., Zabora, J., Jodrey, D., Fogarty, L., et al. (1994). Quality of life of bone marrow transplant long-term survivors. Bone Marrow Transplantation, 13, 589-596.
4.
Barrera, M., Boyd Pringle, L. A., Sumbler, K., & Saunders, F. (2000). Quality of life and behavioral adjustment after pediatric bone marrow transplantation. Bone Marrow Transplantation, 26, 427-435.
5.
Chiodi, S., Spinelli, S., Ravera, G., Petti, A. R., van Lint, M. T., Lamparelli, T., et al. (2000). Quality of life in 244 recipients of allogeneic bone marrow transplantation. British Journal of Haematology, 110, 614-619.
6.
Ferrell, B. R. (1996). The quality of lives: 1,525 voices of cancer. Oncology Nursing Forum, 23, 907-916.
7.
Ferrell, B. R., Grant, M., Schmidt, G. M., Rhiner, J., Whitehead, C., Fonbuena, P., et al. (1992a). The meaning of quality of life for bone marrow transplant survivors: Part I. The impact of bone marrow transplant on quality of life. Cancer Nursing, 15, 153-160.
8.
Ferrell, B., Grant, M., Schmidt, G. M., Rhiner, M., Whitehead, C., Fonbuena, P., et al. (1992b). The meaning of quality of life for bone marrow transplant survivors: Part 2. Improving quality of life for bone marrow transplant survivors. Cancer Nursing, 15, 247-253.
9.
Helder, D. I., Bakker, B., de Heer, P., van der Veen, F., Vossen, J. M. J. J., Wit, J. M., et al. (2004). Quality of life in adults following bone marrow transplantation during childhood. Bone Marrow Transplantation, 33, 329-336.
10.
Hinds, P. S., Gattuso, J. S., Fletcher, A., Baker, E., Coleman, B., Jackson, T., et al. (2004). Quality of life as conveyed by pediatric patients with cancer. Quality of Life Research, 13(4), 761-772.
11.
Kanabar, D. J., Attard-Montalto, S., Saha, V., Kingston, J. E., Malpas, J. E., & Eden, O. B. (1995). Quality of life in survivors of childhood cancer after megatherapy with autologous bone marrow rescue. Pediatric Hematology and Oncology, 12, 29-36.
12.
Matthes-Martin, S., Lamche, M., Ladenstein, R., Emminger, W., Felsberger, C., Topt, R., et al. (1999). Organ toxicity and quality of life after allogeneic bone marrow transplantation in pediatric patients: A single center retrospective analysis. Bone Marrow Transplantation, 23, 1049-1053.
13.
McQuellon, R. P., Russell, G. B., Cella, D. F., Craven, B. L., Brady, M., Bonomi, A., et al. (1997). Quality of life in bone marrow transplantation: Development of the Functional Assessment of Cancer Therapy - Bone Marrow Transplant (FACT-BMT) scale. Bone Marrow Transplantation, 19(4), 357-368.
14.
Molassiotis, A., & Morris, P. J. (1998). The meanings of quality of life and the effects of unrelated donor bone marrow transplants for chronic myeloid leukemia in adult long-term survivors. Cancer Nursing, 21, 205-211.
15.
Nespoli, L., Verri, A. P., Locatelli, F., Bertuggia, L., Taibi, R. M., & Burgio, G. R. (1995). The impact of paediatric bone marrow transplantation on quality of life. Quality of Life Research, 4, 233-240.
16.
Parsons, S. K., Barlow, S. E., Levy, S. L., Supran, S. E., & Kaplan, S. H. (1999). Heath-related QOL in pediatric bone marrow transplant survivors: According to whom? International Journal of Cancer, 12, 46-51.
17.
Parsons, S. K., Shih, M. C., Mayer, D. K., Barlow, S. E., Supran, S. E., Levy, S. L., et al. (2005). 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. Quality of Life Research, 14(6), 1613-1625.
18.
Phipps, S., Dunavant, M., Garvie, P. A., Lensing, S., & Rai, S. N. (2002). Acute health-related quality of life in children undergoing stem cell transplant: I. Descriptive outcomes. Bone Marrow Transplantation, 29, 425-434.
19.
Phipps, S., Dunavant, M., Lensing, S., & Rai, S. N. (2002). Acute health-related quality of life in children undergoing stem cell transplant: II. Medical and demographic determinants. Bone Marrow Transplantation, 29, 435-442.
20.
Prieto, J. M., Saez, R., Carreras, E., Atala, J., Sierra, J., Rovia, M., et al. (1996). Physical and psychosocial functioning of 117 survivors of bone marrow transplantation. Bone Marrow Transplantation, 17, 1133-1142.
21.
Rapkin, B. D., & Schwartz, C. E. (2004). Toward a theoretical model of quality-of-life appraisal: Implications of findings from studies of response shift. Health and Quality of Life Outcomes. Accessed at http://www.hqlo.com/content/2/2/14.
22.
Schmidt, G. M., Niland, J. C., Forman, S. J., Fonbuena, P. P., Dagis, A. C., Grant, M. M., et al. (1993). Extended follow-up in 212 long-term allogeneic bone marrow transplant survivors: Issues of QOL. Transplantation, 55, 551-557.
23.
Schwartz, C. E., & Rapkin, B. D. (2004). Reconsidering the psychometrics of quality of life assessment in light of response shift and appraisal. Health and Quality of Life Outcomes. Accessed at http://www.hqlo.com/content/2/1/16.
24.
Schwartz, C. E., & Sprangers, J. A. G. (1999). Methodological approaches for assessing response shift in longitudinal health-related quality-of-life research. Social Science & Medicine, 48, 1531-1548.
25.
Sprangers, M. A. G., & Schwartz, C. E. (1999). Integrating response shift into health-related quality of life research: A theoretical model. Social Science & Medicine, 48, 1507-1515.
26.
Varni, J. W., Burwinkle, T. M., Katz, E. R., Meeske, K., & Dickinson, P. (2002). The PedsQL™ in pediatric cancer: Reliability and validity of the Pediatric Quality of Life Inventory™ Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer, 94, 2090-2106.
27.
Varni, J. W., Seid, M., & Kurtin, P. S. (2001). The PedsQL™ 4.0: Reliability and validity of the Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales in healthy and patient populations. Medical Care, 39, 800-812.
28.
Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL™. Measurement model for the Pediatric Quality of Life Inventory™. Medical Care, 37, 126-139.
29.
Whedon, M., Stearns, D., & Mills, L. E. (1995). Quality of life of long-term adult survivors of autologous bone marrow transplantation. Oncology Nursing Forum, 22, 1527-1537.
