Parental emotional functioning declines with occurrence of clinical complications in pediatric hematopoietic stem cell transplant

Abstract

Purpose

Parents’ stress levels are high prior to their child’s hematopoietic stem cell transplant (HSCT) and during transplant hospitalization, usually abating after discharge. Nevertheless, a subgroup of parents continues to experience frequent anxiety and mood disruption, the causes of which are not well understood. The purpose of this study was to assess whether clinical complications of HSCT could explain variation in parents’ recovery of emotional functioning.

Methods

Pediatric HSCT recipients (n = 165) aged 5–18 and their parents were followed over the first year post-transplant. Health-related quality of life assessments and medical chart reviews were performed at each time period (baseline, 45 days, 3, 6, and 12 months). We tested the association between clinical complications [acute and chronic graft versus host disease (aGVHD and cGVHD), organ toxicity, and infection] and longitudinally measured parental emotional functioning, as assessed by the Child Health-Ratings Inventories. The models used maximum likelihood estimation with repeated measures.

Results

In adjusted analyses covering the early time period (45 days and 3 months), aGVHD grade ≥2, intermediate or poor organ toxicity, and systemic infection were associated with decreases in mean parental emotional functioning of 5.2 (p = 0.086), 5.8 (p = 0.052), and 5.1 (p = 0.023) points, respectively. In the later time period (6 and 12 months), systemic infection was associated with a decrease of 20 points (p < 0.0001). cGVHD was not significantly associated.

Conclusions

When children experience clinical complications after HSCT, parental emotional functioning can be impacted. Intervening at critical junctures could mitigate potential negative consequences for parents and their children.

Appendices

Appendix 1

Bearman maximum overall toxicity:

Regimen-related, non-hematologic toxicity during the first 100 days following HSCT was evaluated for all patients using the Bearman Toxicity Scale, which is widely used in HSCT-related clinical studies. [15] The scale utilizes a four-point scale from 0–3, (range, absent to severe, end-organ damage) for each of eight organ systems [e.g., cardiac, bladder, renal, pulmonary, hepatic, CNS (central nervous system), stomatitis, and GI (gastrointestinal)]. Maximum overall toxicity is classified as “good,” “intermediate,” or “poor,” based on the combination of toxicity grading for each organ system. “Good” is defined as ≤grade 1 in all organ systems or maximum toxicity of 2 in ≤2 organ systems. “Intermediate” is defined as maximum toxicity of 2 in ≥3 organ systems, and “poor” is defined as maximum toxicity of 3 in at least one organ system.

Appendix 2

Participating institutions and site investigators in the journeys to recovery study

Central Project Staff

Tufts Medical Center, Boston, MA: Susan K. Parsons, MD, MRP, Principal Investigator

Site Principal Investigators

Baylor College of Medicine/Texas Children’s Hospital, Houston, TX: Lynette Harris, PhD and Robert A. Krance, MD, Principal Investigators

City of Hope, Duarte, CA: Sunita Patel, PhD, Principal Investigator; Joseph Rosenthal, MD, Site Consultant

Dana-Farber Cancer Institute, Boston, MA: Christopher Recklitis, PhD, MPH, Principal Investigator

Fred Hutchinson Cancer Research Center, Seattle, WA: Karen L. Syrjala, PhD, Principal Investigator; Jean Sanders, MD, Co-Principal Investigator

Medical College of Wisconsin, Milwaukee, WI: Mary Jo Kupst, PhD, Principal Investigator; Kristin Bingen, PhD and James Casper, MD, Co-Principal Investigators

University of Pittsburgh/Children’s Hospital of Pittsburgh, Pittsburgh, PA: Robert B. Noll, PhD, Principal Investigator; Linda J. Ewing, PhD, RN, Co-Principal Investigator