Integration of Palliative Care in Hematopoietic Cell Transplant: Pediatric Patient and Parent Needs and Attitudes

Context. Early integration of palliative care (PC) in hematopoietic cell transplantation (HCT) has demonstrated benefits, yet barriers remain, including perceived lack of patient/caregiver receptivity despite no data on attitudes toward PC and limited patient/caregiver reported outcomes in pediatric HCT.Objectives. This study aimed to evaluate perceived symptom burden and patient/parent attitudes toward early PC integration in pediatric HCT.Methods. Following IRB approval, consent/assent, eligible participants were surveyed at St. Jude Children's Research Hospital including English-speaking patients aged 10-17, 1-month to 1-year from HCT, and their parents/primary-caregivers, as well as parent/primary-caregivers of living HCT recipients 10. Data were assessed for trends in response content frequencies, percentages, and associations.Results. Eighty one participants, within one year of HCT, at St. Jude Children's Research Hospital were enrolled including: 36 parents of patients10, 24 parents of patients >= age-10, and 21 patients >= age-10. Most (65%) were 1-3 months from HCT. Analysis revealed high levels of perceived symptom suffering in the first month of HCT. 85.7% of patients and 73.4% of parents expressed that a-great-deal/a-lot of attention should be paid to quality-of-life from the start of HCT. Most respondents (patients-52.4/parents-50%) indicated they would likely have wanted early PC consult and very few (0%-patients/3.3%-parents) reported definite opposition to early PC involvement in HCT. Conclusion. Our findings suggest that patient/family receptivity should not be a barrier to early PC in pediatric HCT; obtaining patient reported outcomes is a priority in the setting of high symptom burden; and robust quality-of-life directed care with early PC integration is both indicated and acceptable to patients/caregivers. J Pain Symptom Manage 2023;66:248-257. (c) 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Automated summary

This study aimed to evaluate patient and parent attitudes toward early palliative care (PC) integration in pediatric hematopoietic cell transplantation (HCT). The results showed that the majority of participants believed that quality of life should be prioritized from the start of HCT, and most expressed a positive attitude towards early PC consultation.