Maternal Perspectives on Children’s Health-Related Quality of Life During the First Year After Pediatric Hematopoietic Stem Cell Transplant

Abstract

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.

Child and parental adaptation to pediatric stem cell transplantation

“…It is possible that our follow-up period post-SCT was too short to detect any time effects and needs to be extended in further studies. Differences in child and proxy evaluations of HRQoL have been reported by many other researchers [10,14,32]. A first explanation could be that parent and child reports of HRQoL are based on different perspectives: the child reports on his or her subjective personal situation, whereas parents can only infer from observations and communication with the child [23].…”

Health-related quality of life in survivors of BMT for paediatric malignancy: a systematic review of the literature

“…We refer to the article most relevant to psychosocial outcomes for the purpose of this review. Studies were conducted in the US, 7,[16][17][18][19][20][21] Sweden, [22][23][24] Canada, 25 Netherlands, 26 Spain, 27 Austria 28 and France. 29 All but three 21,28,29 were single centre studies.…”

“…7,[16][17][18]21,25,28 Sample size ranged from 22 26 to 160 21 and involved 988 children. Age at assessment was 7-32 years for crosssectional studies, and 19 months (pre-) to 23 years (post transplant) for longitudinal research.…”

“…18,21,27 Three other studies 22,28,26 included allogeneic patients only and one included only autologous patients. 24 Treatment involved BMT for six cohorts, 7,18,[24][25][26][27] BMT or PBSC transplant for two 22,28 and SCT, not further specified, in four.…”

“…24 Treatment involved BMT for six cohorts, 7,18,[24][25][26][27] BMT or PBSC transplant for two 22,28 and SCT, not further specified, in four. 16,17,21,29 One or more standardized measure of HRQL (Table 3) was used in eight studies, 18,21,22,[25][26][27][28][29] but these included 12 different measures. Six generic and five cancer-specific measures were used.…”