The Lived Experience of Pediatric Hematopoietic Stem Cell Transplantation: Pre-HCT Understanding and Post-HCT Health-Related Quality of Life

Abstract

Objective: Pediatric hematopoietic stem cell transplantation (HCT) has the potential to improve health-related quality of life (HRQOL) for youth and young adults (YYAs) with malignant and non-malignant conditions. Yet, it is an intense process with changing health care needs and long-term effects. Historically underrepresented individuals may face unique challenges, thus their perspective can identify areas for improved education and care. The aim of this study was to identify gaps in knowledge about HCT and factors affecting post-HCT HRQOL from the point-of-view of a sociodemographically and medically diverse group of YYAs and their caregivers. Methods: A convenience sample of YYAs post-HCT were enrolled from an urban hospital. YYAs and/or their caregivers participated in semi-structured interviews (assessing their understanding of HCT and current issues affecting YYA’s HRQOL). Interviews were audio-recorded, transcribed, and analyzed using content analysis. Results: YYAs (N = 17; M current age = 15.9 ± 5.2 years-old; M age during HCT = 12.8 ± 6.2; 58.8% male; 52.9% non-White) with malignant (41.1%) and non-malignant (58.2%) conditions were enrolled. Eleven YYAs and twelve caregivers (50% mothers) participated in interviews. Overall, participants reported high levels of understanding of the HCT process (informed by their health care team and the Internet). Yet, they expressed that knowing about HCT was very different from experiencing HCT firsthand. Challenges most affecting YYA’s current HRQOL were related to fertility and hormones, emotional health, social interactions, and academics. Conclusions: Participants reported feeling well-informed about HCT. Yet, they also experienced challenges related to HCT and post-HCT HRQOL, highlighting important areas for continued education and intervention.

Implications for Impact Statement

Youth, young adults (YYAs), and their caregivers undergoing HCT receive information about the process from their health care teams and the Internet. Despite feeling well informed, they are still surprised by aspects of HCT and the treatment’s continued impact on their health-related quality of life. After HCT, YYAs experienced difficulties related to fertility and hormones, mental health, peer relationships, and school.