Parent Outlook: How Parents View the Road Ahead as They Embark on Hematopoietic Stem Cell Transplantation for Their Child.
Pediatric hematopoietic stem cell transplantation (HSCT) offers cure for high-risk malignancies and other conditions, but carries a risk of complications. Parental outlook regarding their child's transplantation course and future health has been largely unexplored. This report presents the Parent Outlook Scale, describes its properties, and examines the outlook of parents embarking on their child's transplantation course and the associated variables. Parents of children scheduled to undergo HSCT (n = 363) at 8 US transplantation centers completed the Parent Outlook Scale, comprising 4 items assessing frequency of the parent's thoughts about the potential difficulty of the child's transplantation (Transplant Difficult subscale) and worsened health (Health Worse subscale). Item responses were rated on a 5-point Likert scale (ranging from "none" to "all of the time") and, along with scale/subscale scores, transformed to 100-point scales, with higher scores connoting greater thought frequency. Psychometrics were explored. Multivariable models identified personal and clinical characteristics associated with scale and subscale scores. The Parent Outlook Scale (α = 0.75) and subscales were found to have sound psychometric properties. Factor loading supported the single scale with 2 subscales representing distinct aspects of overall outlook. Mean scores (Parent Outlook, 52.5 ± 21.7; Transplant Difficult, 64.4 ± 25.6; Health Worse, 40.7 ± 25.7) revealed variability within and across scale/subscales. Significantly different mean subscale scores (P < .001) indicated more frequent Transplant Difficult thoughts than Health Worse thoughts. Clinical factors (solid tumor diagnosis and unrelated donor transplant) and a parent factor (worse emotional functioning) were associated with higher scale and subscale scores. Our findings show that the outlook of parents embarking on their child's HSCT course is varied and not solely a product of clinical factors readily apparent to clinicians. Referring and transplantation clinicians should create opportunities to explore with parents their perspectives and concerns before and during the course of HSCT.
Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts; Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts; Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, Boston, Massachusetts; Department of Medicine, Boston Children's Hospital, Boston, Massachusetts. Electronic address: christina_ullrich@dfci.harvard.edu.
Christina K
CK
Ullrich
Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, Massachusetts; Department of Medicine, Tufts University School of Medicine, Boston, Massachusetts.
Angie Mae
AM
Rodday
Department of Pediatrics, Medical College of Wisconsin, Milwaukee, Wisconsin.
Kristin
K
Bingen
Department of Pediatrics, Medical College of Wisconsin, Milwaukee, Wisconsin.
Mary Jo
MJ
Kupst
Departments of Population Sciences and Supportive Care Medicine, City of Hope Medical Center, Duarte, California.
Sunita K
SK
Patel
Biobehavioral Sciences Department, Fred Hutchinson Cancer Research Center, Seattle, Washington.
Karen L
KL
Syrjala
Department of Pediatrics, Baylor College of Medicine, Houston, Texas.
Lynnette L
LL
Harris
Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts; Department of Medicine, Boston Children's Hospital, Boston, Massachusetts.
Christopher J
CJ
Recklitis
Division of Oncology, Children's Hospital of Philadelphia and Department of Pediatrics, Perelman School of Medicine at University of Pennsylvania, Philadelphia, Pennsylvania.
Lisa
L
Schwartz
Division of Bone Marrow Transplant and Immune Deficiency Cincinnati Children's Hospital Medical Center Cincinnati, Ohio.
Stella
S
Davies
Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts; Department of Medicine, Boston Children's Hospital, Boston, Massachusetts.
Eva C
EC
Guinan
Department of Psychiatry, Harvard Medical School, Boston, Massachusetts.
Grace
G
Chang
Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts; Department of Medicine, Boston Children's Hospital, Boston, Massachusetts.
Joanne
J
Wolfe
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.
Susan K
SK
Parsons
D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D005260:Female; D018380:Hematopoietic Stem Cell Transplantation / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy; D010290:Parents / Q000523:psychology*; D011446:Prospective Studies; D011594:Psychometrics
Health-related quality of life; Hematopoietic stem cell transplantation; Pediatrics; Supportive care