Abstract
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.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 1100-1115 |
| Number of pages | 16 |
| Journal | Journal of Pediatric Psychology |
| Volume | 31 |
| Issue number | 10 |
| DOIs | |
| State | Published - Nov 1 2006 |
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Keywords
- Children's self-assessment
- Health status
- Health-related quality of life
- Hematopoietic stem cell transplantation
- Longitudinal studies
- Parent report
ASJC Scopus subject areas
- Pediatrics, Perinatology, and Child Health
- Developmental and Educational Psychology
Cite this
Maternal perspectives on children's health-related quality of life during the first year after pediatric hematopoietic stem cell transplant. / Parsons, Susan K.; Shih, Mei Chiung; DuHamel, Katherine N.; Ostroff, Jamie; Mayer, Deborah K.; Austin, Jane; Martini, D. Richard; Williams, Sharon E.; Mee, Laura; Sexson, Sandra Griffin Bishop; Kaplan, Sherrie H.; Redd, William H.; Manne, Sharon.
In: Journal of Pediatric Psychology, Vol. 31, No. 10, 01.11.2006, p. 1100-1115.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - Maternal perspectives on children's health-related quality of life during the first year after pediatric hematopoietic stem cell transplant
AU - Parsons, Susan K.
AU - Shih, Mei Chiung
AU - DuHamel, Katherine N.
AU - Ostroff, Jamie
AU - Mayer, Deborah K.
AU - Austin, Jane
AU - Martini, D. Richard
AU - Williams, Sharon E.
AU - Mee, Laura
AU - Sexson, Sandra Griffin Bishop
AU - Kaplan, Sherrie H.
AU - Redd, William H.
AU - Manne, Sharon
PY - 2006/11/1
Y1 - 2006/11/1
N2 - 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.
AB - 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.
KW - Children's self-assessment
KW - Health status
KW - Health-related quality of life
KW - Hematopoietic stem cell transplantation
KW - Longitudinal studies
KW - Parent report
UR - http://www.scopus.com/inward/record.url?scp=33750939818&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=33750939818&partnerID=8YFLogxK
U2 - 10.1093/jpepsy/jsj078
DO - 10.1093/jpepsy/jsj078
M3 - Article
VL - 31
SP - 1100
EP - 1115
JO - Journal of Pediatric Psychology
JF - Journal of Pediatric Psychology
SN - 0146-8693
IS - 10
ER -