title: Three sides to a story: Child, parent, and nurse perspectives on the child's experience during hematopoietic stem cell transplantation.
abstract: 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.
authors.affiliation: Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts.|Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts.|Department of Medicine, Boston Children's Hospital, Boston, Massachusetts.
authors.forename: Christina K
authors.identifier: http://orcid.org/0000-0002-5265-6621
authors.initials: CK
authors.lastname: Ullrich
authors.affiliation: Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, Massachusetts.|Department of Medicine, Tufts University School of Medicine, Boston, Massachusetts.
authors.forename: Angie Mae
authors.initials: AM
authors.lastname: Rodday
authors.affiliation: Department of Pediatrics, Medical College of Wisconsin, Milwaukee, Wisconsin.
authors.forename: Kristin M
authors.initials: KM
authors.lastname: Bingen
authors.affiliation: Department of Pediatrics, Medical College of Wisconsin, Milwaukee, Wisconsin.
authors.forename: Mary Jo
authors.initials: MJ
authors.lastname: Kupst
authors.affiliation: Department of Population Sciences, City of Hope Medical Center, Duarte, California.|Department of Supportive Care Medicine, City of Hope Medical Center, Duarte, California.
authors.forename: Sunita K
authors.initials: SK
authors.lastname: Patel
authors.affiliation: Department of Biobehavioral Sciences, Fred Hutchinson Cancer Research Center, Seattle, Washington.
authors.forename: Karen L
authors.initials: KL
authors.lastname: Syrjala
authors.affiliation: Department of Pediatrics, Baylor College of Medicine, Houston, Texas.
authors.forename: Lynnette L
authors.initials: LL
authors.lastname: Harris
authors.affiliation: Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts.|Department of Medicine, Boston Children's Hospital, Boston, Massachusetts.
authors.forename: Christopher J
authors.initials: CJ
authors.lastname: Recklitis
authors.affiliation: Department of Psychiatry, Harvard Medical School, Boston, Massachusetts.
authors.forename: Grace
authors.initials: G
authors.lastname: Chang
authors.affiliation: Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts.|Department of Radiation Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts.|Department of Radiation Oncology, Harvard Medical School, Boston, Massachusetts.
authors.forename: Eva C
authors.initials: EC
authors.lastname: Guinan
authors.affiliation: Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, Massachusetts.|Department of Medicine, Tufts University School of Medicine, Boston, Massachusetts.
authors.forename: Norma
authors.initials: N
authors.lastname: Terrin
authors.affiliation: Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, Massachusetts.|Department of Medicine, Tufts University School of Medicine, Boston, Massachusetts.
authors.forename: Hocine
authors.initials: H
authors.lastname: Tighiouart
authors.affiliation: Department of Psychology, St. Jude Children's Research Hospital, Memphis, Tennessee.
authors.forename: Sean
authors.identifier: http://orcid.org/0000-0002-2995-8162
authors.initials: S
authors.lastname: Phipps
authors.affiliation: Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, Massachusetts.|Department of Medicine, Tufts University School of Medicine, Boston, Massachusetts.|Department of Pediatrics, Tufts University School of Medicine, Boston, Massachusetts.
authors.forename: Susan K
authors.initials: SK
authors.lastname: Parsons
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D005260:Female; D018380:Hematopoietic Stem Cell Transplantation / Q000523:psychology*; D006801:Humans; D016014:Linear Models; D008297:Male; D015999:Multivariate Analysis; D009369:Neoplasms / Q000523:psychology / Q000628:therapy*; D009726:Nurses; D010290:Parents; D011446:Prospective Studies; D011788:Quality of Life / Q000523:psychology*; D013315:Stress, Psychological / Q000523:psychology*; D019172:Transplantation Conditioning / Q000523:psychology*
keywords: hematopoietic stem cell transplantation; observer variation; patient-reported outcomes; pediatrics; proxy report; quality of life; self-report