Parent proxy assessment of sibling quality of life following pediatric hematopoietic cell transplantation

David Buchbinder,Jacqueline N Casillas,Leonard S Sender,Steven Neudorf,Heather Huszti,Susan K Parsons,Lilibeth Torno,Lonnie K Zeltzer,Sunita K Patel,Diane J Nugent

doi:10.1186/s12955-019-1231-9

Abstract

BackgroundWhen a child undergoes hematopoietic cell transplantation (HCT), the impact extends to the entire family, including siblings. Assessment of the quality of life (QoL) of siblings is challenged by their general lack of availability for regular assessment by clinical providers. Thus, the use of parent proxy reporting may be useful. Our aim was to describe the QoL of siblings of HCT survivors, as reported by their parents, as well as to identify parent and family factors associated with lower sibling QoL.MethodsA cross-sectional study was utilized to assess parent-reported QoL of the HCT recipient’s sibling (Short Form (SF)-10 Health Survey for Children and the Pediatric Symptom Checklist (PSC)-17). Parent QoL was assessed using the SF-12. Multivariable linear regression was used to explore hypothesized predictors of sibling QoL, including parent QoL, family impact/function (Impact on Family Scale, Family Adaptability and Cohesion Evaluation Scales, IV, and a question asking about financial problems) while adjusting for demographic and HCT characteristics.ResultsNinety-seven siblings (55% males) with a mean age of 12 years (standard deviation [SD] 4 years) were assessed, representing HCT survivors, who were an average of 5 years (SD 4 years) post-HCT. Neither sibling psychosocial (mean 49.84, SD 10.70, p = 0.87) nor physical health scores (mean 51.54, SD 8.42, p = 0.08) differed from norms. Parent proxies reported behavioral/emotional problems (PSC-17 total score > 15) in 24% of siblings. While parental ratings of their own physical health (SF-12 were higher than norms (mean 53.04, SD 8.17, p = 0.0005), mental health scores were lower (mean 45.48, SD 10.45, p < 0.0001). In multivariable analysis, lower parent emotional functioning and adverse family function were associated with lower sibling QoL, as reported by parents.ConclusionsWhile proxy-reported QoL of siblings did not differ significantly from normative data, both parent QoL and family function were associated with sibling QoL. Future research is needed to understand how siblings themselves perceive their QoL following HCT.

Highlights

When a child undergoes hematopoietic cell transplantation (HCT), the impact extends to the entire family, including siblings
Because siblings are relatively inaccessible given their relative absence in clinics and at the bedside, the assessment of quality of life (QoL) of siblings of HCT survivors is challenging
A robust appreciation of the impact of the HCT experience on families including siblings has remained relatively unexplored. To address this gap in knowledge, this study focused on the characterization of sibling QoL, defined as the health and well-being of the sibling, incorporating physical, mental, and social health [10, 11], as assessed by parent proxies

Summary

Introduction

When a child undergoes hematopoietic cell transplantation (HCT), the impact extends to the entire family, including siblings. High doses of chemotherapy often in combination with irradiation are used to ablate hematopoietic stem cells as well as cells of the immune system which mediate rejection. As average US families have two children, [4] this translates to a growing population of siblings of survivors of HCT. The NCI’s Office of Cancer Survivorship notes that the survivorship experience impacts all members of the family, including the patient’s siblings. This family impact may play a critical role in the survivor’s ability to adapt and progress towards positive outcomes [5]

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Discussion

Conclusion