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.