Using Patient-Reported Outcomes to Measure Symptoms in Children With Advanced Cancer.

Abstract:

BACKGROUND:Children with advanced cancer experience symptoms despite access to quality care. Symptom research has previously relied upon retrospective designs and parent proxy rather than prospective measurement with self-report. OBJECTIVE:This study evaluated the feasibility of electronic data collection in children with advanced cancer using self-report of symptom frequency, severity, and distress. METHODS:A multisite prospective cohort design was used for this study. Children who were 7 to 18 years of age and English-speaking and had a diagnosis of advanced cancer were included. Symptom frequency, severity, and level of distress were measured every 2 weeks. RESULTS:Forty-six children completed 563 of 622 (91%) administered electronic symptom assessments. Pain, fatigue, nausea, and sleeping difficulties were the most reported symptoms across all assessments and during the last 12 weeks of life. Symptoms with the highest composite scores included pain, fatigue, nausea, and sleeping difficulties. During the last 12 weeks of life, pain, fatigue, diarrhea, and sleeping difficulties had the highest composite scores. When the domains of frequency, severity, and distress were compared between groups, children reported significantly higher frequency of pain and eating difficulty during the last 12 weeks of life. CONCLUSIONS:Electronic data collection is a feasible way to evaluate the constellation of symptoms. Children with advanced cancer continue to experience physical and psychological symptoms, especially during the last 12 weeks of life despite quality care. IMPLICATIONS FOR PRACTICE:Assessment of symptom domains, including frequency, severity, and distress when symptoms are present may allow clinicians to better understand and manage symptoms of most concern to the patient.

journal_name

Cancer Nurs

journal_title

Cancer nursing

authors

Montgomery KE,Raybin JL,Ward J,Balian C,Gilger E,Murray P,Li Z

doi

10.1097/NCC.0000000000000721

subject

Has Abstract

pub_date

2020-07-01 00:00:00

pages

281-289

issue

4

eissn

0162-220X

issn

1538-9804

pii

00002820-202007000-00005

journal_volume

43

pub_type

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