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

Abstract

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 that have undergone hematopoietic cell transplantation (HCT) remains sparse. We sought to investigate the characteristics of AYA patients aged 15 − 25 who received allogeneic HCT and subsequently died while inpatient at our institution between the years 2008 − 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 which were due to treatment-related complications. Compared to 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 < .0001) and to have received mechanical ventilation (68% vs. 17%, P < .0001) or hemodialysis (53% vs. 0%, P < .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.

An Integrative Review of Factors Associated With Symptom Burden at the End of Life in Children With Cancer

“…Symptom Reporting. Parent proxy report (n = 13, 48%) was the most common method used to obtain information related to symptom experiences during the EOL period for children with cancer (Friedrichsdorf et al, 2014;Heath et al, 2010;Ilowite et al, 2018;Latha et al, 2016;Pritchard et al, 2008;Schindera et al, 2014;Theunissen et al, 2007;Tomlinson et al, 2011;Ullrich et al, 2010a;Ullrich et al, 2010b;von Lutzau et al, 2012;Wolfe et al, 2015;Zelcer et al, 2010) followed by medical chart review (n = 11, 41%; Bell et al, 2010;Beretta et al, 2010;Birtar et al, 2015;Hassan et al, 2018;Hechler et al, 2008;Hoell et al, 2017;Jagt-van Kampen et al, 2015;Kuhlen et al, 2016;Snaman et al, 2018;Veldhuijzen van Zanten et al, 2015;Ye et al, 2019). Of the studies that used parent proxy-report, 4 (31%) used a combination of parents', providers' and patients' reports (Ullrich et al, 2010a;Van Cleve et al, 2012;Wolfe et al, 2015;Zhukovsky et al, 2015).…”

“…Most studies (n =16, 59%) used investigator-developed questionnaires (Heath et al, 2010;Hechler et al, 2008;Latha et al, 2016;Theunissen et al, 2007;Ullrich et al, 2010a;Ullrich et al, 2010b;von Lutzau et al, 2012) or validated instruments to obtain information about symptom experiences at EOL (Birtar et al, 2015;Friedrichsdorf et al, 2014;Ilowite et al, 2018;Rosenberg et al, 2016;Snaman et al, 2018;Tomlinson et al, 2011;Van Cleve et al, 2012;Wolfe et al, 2015;Zhukovsky et al, 2015). The PediQUEST Memorial Symptom Assessment Scale was the most common validated tool used (Birtar et al, 2015;Ilowite et al, 2018;Rosenberg et al, 2016;Wolfe et al, 2015;Zhukovsky et al, 2015).…”

“…Use of Cancer-Directed Therapies. Approximately 30% to 60% of children received mild (oral chemotherapy), moderate (intravenous chemotherapy radiotherapy, oral chemotherapy plus major procedures) or intensive (stem cell transplant [SCT], surgery, or radiotherapy plus intravenous chemotherapy) cancer-directed therapy in the past several days to weeks proximal to death (Bell et al, 2010;Beretta et al, 2010;Friedrichsdorf et al, 2014;Hassan et al, 2018;Heath et al, 2010;Kuhlen et al, 2016;Schnidera et al, 2014;Snaman et al, 2018;Tomlinson et al, 2011;Pritchard et al, 2008;Ullrich et al, 2010a;Ullrich et al, 2010b;Veldhuijzen van Zanten et al, 2015;von Lutzau et al, 2012;Wolfe et al, 2015). Intravenous chemotherapy was the most common cancerdirected therapy followed by oral chemotherapy, radiotherapy, surgery, and SCT (Hassan et al, 2018;Jagt-van Kampen et al, 2015;Kuhlen et al, 2016;Pritchard et al, 2008;Tomlinson et al, 2011;Wolfe et al, 2015;Ye et al, 2019).…”

“…Across studies, few children received palliative care and/or died in a hospice setting. Of those who died in the hospital, intensive care unit (ICU) was the most common site of death (Bell et al, 2010;Heath et al, 2010;Schindera et al, 2014;Snaman et al, 2018;Ullrich et al, 2010a) followed by the oncology ward (Hassan et al, 2018;Pritchard et al, 2008;Ullrich et al, 2010b;von Lutzau et al, 2012). Children who received SCT (Snaman et al, 2017;Ullrich et al, 2010a;Wolfe et al, 2015) or intravenous chemotherapy (Hassan et al, 2018;Heath et al, 2010;Schindera et al, 2014) were more likely to die in the ICU due to treatment-related toxicities and receive aggressive medical interventions (i.e., mechanical ventilation, feeding tube, and ventriculoperitoneal shunt placements).…”

Healthcare Utilization is High in Adult Patients Relapsing after Allogeneic Hematopoietic Cell Transplantation

“…Rationales for this EOL pattern of care have been proposed, including the unpredictable pattern of clinical decline in patients with hematologic malignancies, clinicians' bias toward offering all possible treatments for these patients, and the small but finite possibility of cure for select patients [17]. Studies have similarly demonstrated that adults undergoing allogeneic HCT for hematologic malignancies use high levels of healthcare resources at EOL [18][19][20][21][22]. However, despite the exceedingly high risk of mortality in AL/MDS patients who relapse after allogeneic HCT, little data exist specifically examining the intensity of healthcare utilization broadly and at the EOL in this patient population, with the few existing studies reporting qualitative or limited data on small patient samples [23,24].…”