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

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

Levine DR; Epperly R; Collins G; Talleur AC; Mandrell B; Pritchard M; Sarvode MS; Li C; Lu Z; Baker JN

Journal of Pain and Symptom Management

2023

Caregivers; Hematopoietic Cell Transplantation; Palliative Care; Patients; Pediatrics; Quality of life

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, 1month -1year from HCT, and their parents/primary-caregivers, as well as parent/primary-caregivers of living HCT recipients <age-10. Data were assessed for trends in response content frequencies, percentages, and associations. Results 81 participants, within one year of HCT, at St. Jude Children's Research Hospital were enrolled including: 36 parents of patients<age-10, 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.

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