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Three sides to a story: Child, parent, and nurse perspectives on the child's experience during hematopoietic stem cell transplantation. Cancer 2017 Aug 15;123(16):3159-3166



Pubmed ID


Pubmed Central ID




Scopus ID

2-s2.0-85017468292   7 Citations


BACKGROUND: The experience of children undergoing hematopoietic stem cell transplantation (HSCT), including the ways in which different participants (ie, children, parents, and nurses) contribute to the overall picture of a child's experience, is poorly characterized. This study evaluated parent, child, and nurse perspectives on the experience of children during HSCT and factors contributing to interrater differences.

METHODS: Participants were enrolled in a multicenter, prospective study evaluating child and parent health-related quality of life over the year after HSCT. Children (n = 165) and their parents and nurses completed the Behavioral, Affective, and Somatic Experiences Scale (BASES) at baseline (before/during conditioning), 7 days after the stem cell infusion (day+7), and 21 days after the stem cell infusion (day+21). The BASES domains included Somatic Distress, Mood Disturbance, Cooperation, and Getting Along. Higher scores indicated more distress/impairment. Repeated measures models by domain assessed differences by raters and changes over time and identified other factors associated with raters' scores.

RESULTS: Completion rates were high (≥73% across times and raters). Multivariate models revealed significant time-rater interactions, which varied by domain. For example, parent-rated Somatic Distress scores increased from baseline to day+7 and remained elevated at day+21 (P < .001); children's scores were lower than parents' scores across time points. Nurses' baseline scores were lower than parents' baseline scores, although by day+21 they were similar. Older child age was associated with higher Somatic Distress and Mood Disturbance scores. Worse parent emotional functioning was associated with lower scores across raters and domains except for Cooperation.

CONCLUSIONS: Multirater assessments are highly feasible during HSCT. Ratings differ by several factors; considering ratings in light of such factors may deepen our understanding of the child's experience. Cancer 2017;123:3159-66. © 2017 American Cancer Society.

Author List

Ullrich CK, Rodday AM, Bingen KM, Kupst MJ, Patel SK, Syrjala KL, Harris LL, Recklitis CJ, Chang G, Guinan EC, Terrin N, Tighiouart H, Phipps S, Parsons SK


Kristin M. Bingen PhD Professor in the Pediatrics department at Medical College of Wisconsin

MESH terms used to index this publication - Major topics in bold

Child, Preschool
Hematopoietic Stem Cell Transplantation
Linear Models
Multivariate Analysis
Prospective Studies
Quality of Life
Stress, Psychological
Transplantation Conditioning
jenkins-FCD Prod-411 e00897e83867fcfa48419861683711f8d99adb75