Parent Outlook: How Parents View the Road Ahead as They Embark on Hematopoietic Stem Cell Transplantation for Their Child

Abstract

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.

Keywords: Health-related quality of life; Hematopoietic stem cell transplantation; Pediatrics; Supportive care.

Figure 1

Flow diagram of study participants. The study sample was derived from 2 studies: Journeys to Recovery, a longitudinal observational study, and HSCT-Comprehensive Health Enhancement Support System, a randomized controlled study that evaluated the efficacy of a web-based intervention providing information and support resources for parents of children post-HSCT.

Figure 2

Distribution of parent responses to outlook items based on frequency of thoughts. For all items, responses ranged from “none of the time” to “all of the time.” At least one-half of all parents reported very frequent (“most” or “all of the time”) thoughts about the anticipated difficulty of transplantation for their child (“Transplant will be difficult for my child”) or themselves (“Transplant will be difficult for me”). Far fewer reported frequent thoughts about adverse child health outcomes (“My child’s future health will be worse than it is now” and “My child might die” items). n = 363 for all except “transplant worse,” with n = 362.