Journal of Pediatric Psychology Advance Access first published online on September 8, 2005
This version published online on October 31, 2006
Journal of Pediatric Psychology, doi:10.1093/jpepsy/jsj078
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1 The Institute for Clinical Research and Health Policy Studies, Tufts-New England Medical Center; Tufts University School of Medicine
* To whom correspondence should be addressed. 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. The title has been updated.
Received November 10, 2004
Accepted July 26, 2005
Articles
Maternal Perspectives on Children's Health-Related Quality of Life During the First Year After Pediatric Hematopoietic Stem Cell Transplant
Susan K. Parsons MD, MRP 1 *, Mei-Chiung Shih PhD 2, Katherine N. DuHamel PhD 3, Jamie Ostroff PhD 4, Deborah K. Mayer RN, MSN 1, Jane Austin PhD 3, D. Richard Martini MD 5, Sharon E. Williams PhD 6, Laura Mee PhD 7, Sandra Sexson MD 7, Sherrie H. Kaplan PhD 8, William H. Redd PhD 3, and Sharon Manne PhD 9
2 Clinical Research Program, Children’s Hospital; Harvard School of Public Health
3 Mount Sinai School of Medicine
4 Memorial Sloan-Kettering Cancer Center
5 Children's Memorial Hospital, Northwestern University Medical School
6 Packard Children’s Hospital, Stanford University Medical School
7 Emory University School of Medicine
8 University of California
9 Fox Chase Cancer Center
Susan K. Parsons, E-mail: sparsons{at}tufts-nemc.org
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