Journal of Pediatric Psychology Advance Access originally published online on September 8, 2005
Journal of Pediatric Psychology 2006 31(10):1100-1115; doi:10.1093/jpepsy/jsj078
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
Maternal Perspectives on Children’s Health-Related Quality of Life During the First Year After Pediatric Hematopoietic Stem Cell Transplant
1 The Institute for Clinical Research and Health Policy Studies, Tufts-New England Medical Center, 2 Tufts University School of Medicine, 3 Clinical Research Program, Children’s Hospital, 4 Harvard School of Public Health, 5 Mount Sinai School of Medicine, 6 Memorial Sloan-Kettering Cancer Center, 7 Children’s Memorial Hospital, Northwestern University Medical School, 8 Packard Children’s Hospital, Stanford University Medical School, 9 Emory University School of Medicine, 10 University of California, and, 11 Fox Chase Cancer Center
All correspondence concerning this article should be addressed to Susan K. Parsons, MD, MRP, Director, Center on Child and Family Outcomes, Institute for Clinical Research and Health Policy Studies, 750 Washington St., No. 345, Boston, Massachusetts 02111. E-mail: sparsons{at}tufts-nemc.org.
Objective To assess the longitudinal health-related quality of life (HRQL) of children receiving hematopoietic stem cell transplantation (HSCT). Methods Mothers (N = 160) of HSCT recipients aged 5–20 at six US transplant centers completed the Child Health Ratings Inventories (CHRIs), the Disease Impairment Inventory (DSII)–HSCT module, and the Short Form (SF)-36 at baseline, 3, 6, and 12 months. Results HRQL domain scores at baseline varied by recipient age and program site. Longitudinal data over the first year post-HSCT revealed lowest functioning at baseline and 3 months, with largest improvement in functioning between the 3 and 6-months assessments and continued improvement from 6 to 12 months. Recipients of unrelated donor transplants had steepest declines in functioning at 3 months and great HSCT-specific issues at 3 and 6 months. Among children who survived the first year, functioning at 12 months was similar across transplant types and surpassed baseline scores. Children who did not survive the first year exhibited deterioration in HRQL in the months before death and trajectories were strikingly different than for survivors. Conclusions This study offers the first glimpse of the 12-month trajectory of HRQL following pediatric HSCT from mothers’ perspectives. This study also highlights the importance of and approaches to addressing missing data in longitudinal research.
Key words: children’s self-assessment; health status; health-related quality of life; hematopoietic stem cell transplantation; longitudinal studies; parent report.
CiteULike 
Connotea 
Del.icio.us What's this?
This article has been cited by other articles:
|
|
 |
|
  D. K. Mayer, H. Tighiouart, N. Terrin, S. Stewart, E. Peterson, S. Jeruss, and S. K. Parsons A Brief Report of Caregiver Needs and Resource Utilization During Pediatric Hematopoietic Stem Cell Transplantation Journal of Pediatric Oncology Nursing, July 1, 2009; 26(4): 223 - 229. [Abstract] [PDF]
|
|
|
|
 |
|
 J. W. Varni, C. Limbers, and T. M. Burwinkle Literature Review: Health-related Quality of Life Measurement in Pediatric Oncology: Hearing the Voices of the Children J. Pediatr. Psychol., October 1, 2007; 32(9): 1151 - 1163. [Abstract] [Full Text] [PDF]
|
|