Treatment intensity and symptom burden in hospitalized adolescent and young adult hematopoietic cell transplant recipients at the end of life

Adolescent and young adult (AYA) oncology patients experience many physical and psychological symptoms at the end of life (EOL); however, data on these experiences for AYA patients who have undergone hematopoietic cell transplantation (HCT) remains sparse. We sought to investigate the characteristics of AYA patients aged 15 - 25 years who received allogeneic HCT and subsequently died while inpatient at our institution between the years 2008 and 2014. A standardized data extraction tool was used to collect information about patient demographics, treatment and symptoms. We found that during this time frame, 34 AYA patients had received HCT and died while inpatient at our institution, 23 (68%) of whom died because of treatment-related complications. Compared with non-HCT AYA oncology patients (n = 35), patients who received HCT (n = 34) were more likely to have died in the intensive care unit (71% vs 23%, P < 0.0001) and to have received mechanical ventilation (68% vs 17%, P < 0.0001) or hemodialysis (53% vs 0%, P < 0.0001) in the last 30 days of life. These findings demonstrate that AYA patients who receive allogeneic HCT receive intensive EOL treatment, suggesting that these patients may benefit from early integration of expert interdisciplinary services to prospectively assess and manage distressing symptoms.