Association of Patient and Caregiver Distress with Referral to a Palliative Care Clinic in Pediatric Oncology Open Access

Ebelhar, Jonathan (Spring 2024)

Permanent URL: https://etd.library.emory.edu/concern/etds/db78td57p?locale=en
Published

Abstract

Background: Children with cancer experience significant distress, impacting patients and caregivers. Pediatric palliative care (PPC), when integrated early, reduces distressing symptoms and improves quality of life. Utilizing screening tools to identify patients and caregivers experiencing distress could lead to earlier PPC. It is unknown if patient and caregiver distress is associated with referral to subspecialty PPC.

Objective: Assess whether overall distress and distress domains are associated with referral to PPC. 

Methods: A single-institution retrospective case-control study was conducted comparing children with cancer referred to PPC from 2019-2021 to a matched sample of patients not referred. Matching occurred in a 1:2 ratio using propensity scores based on diagnosis, disease stage, relapse status, race, and sex. Distress scores were measured separately for patients and caregivers by the Pediatric DT and averaged over time. Distress was categorized as low (0-4), moderate (5-7), or high (8-10); emotional, practical, family/social, and spiritual distress concerns were collected. Demographic and disease data were collected. Conditional logistic regression was utilized to assess the association between PPC referral and: (1) high DT scores and (2) DT domains. Van Elteren test was used to compare DT scores and DT domains between the cohorts.

Results: Sample included 135 PPC-referred patients matched to 257 non-referred patients. Average DT scores did not differ for patients (1.36 vs. 1.44; p=0.29) or caregivers (2.52 vs. 2.48; p=0.30). Patients with high distress had higher odds of PPC referral (OR 1.89, 95% CI 1.05-3.39). Caregivers reporting family/social concerns had lower odds of PPC referral (OR 0.56, 95% CI 0.33-0.97). There was no association between PPC referral and DT domains for patients. Emotional concerns were most common with 47.8% and 34.4% of patients feeling anxious and annoyed, respectively.

Conclusion: While pediatric cancer causes distress in patients and families, average DT scores were low regardless of PPC referral. Patients with high distress had higher odds of PPC referral and caregivers reporting family/social concerns had lower odds of PPC referral. High patient DT scores could be used as a criterion for PPC referral. Further research is needed to understand the impact PPC has on patient and caregiver distress scores.

Table of Contents

A.    BACKGROUND……………………………………………………………………………………………1

B.    METHODS…………………………………………………………………………………………………..7

C.    RESULTS…………………………………………………………………………………………………..14

D.   DISCUSSION……………………………………………………………………………………………..18

E.    REFERENCES……………………………………………………………………………………………26

F.    TABLES/FIGURES…………………………………………………………………………………….30

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