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Using Patient-Reported Outcomes to Measure Symptoms in Children With Advanced Cancer
Kathleen E Montgomery1, Jennifer L Raybin, Jessica Ward
1Author Affiliations: Department of Nursing, American Family Children's Hospital, Madison, Wisconsin (Dr Montgomery); Center for Cancer and Blood Disorders and Palliative Care, Aurora, Colorado (Ms Raybin); Institute for Nursing and Interprofessional Research (Dr Ward and Dr Murray) and Center for Cancer and Blood Disease (Ms Balian), Children's Hospital Los Angeles, California; Cancer and Blood Disease Institute, Cincinnati Children's Hospital Medical Center, Ohio (Ms Gilger); and Department of Biostatistics and Medical Informatics, University of Wisconsin School of Medicine and Public Health, Madison (Dr Li).
Insights
Electronic symptom assessment is feasible for children with advanced cancer. This method effectively captures symptom frequency, severity, and distress, especially in the final 12 weeks of life.
Area of Science:
- Pediatric Oncology
- Symptom Management
- Digital Health
Background:
- Children with advanced cancer often experience persistent symptoms despite quality care.
- Previous symptom research relied on retrospective data and parent proxies, not prospective self-reports.
- There's a need for accurate, real-time symptom assessment in this population.
Purpose of the Study:
- To evaluate the feasibility of electronic data collection for symptom assessment in children with advanced cancer.
- To measure symptom frequency, severity, and distress using self-report.
- To understand the symptom experience of pediatric cancer patients.
Main Methods:
- A multisite prospective cohort study design was employed.
- Inclusion criteria: 7-18 years old, English-speaking, advanced cancer diagnosis.
- Symptom data collected electronically every two weeks.
Main Results:
- High completion rate (91%) for electronic symptom assessments across 46 children.
- Most frequently reported symptoms: pain, fatigue, nausea, and sleep difficulties.
- Symptoms like pain and eating difficulties were more frequent in the last 12 weeks of life.
Conclusions:
- Electronic data collection is a feasible and effective method for assessing symptom constellations in pediatric oncology.
- Children with advanced cancer experience significant physical and psychological symptoms, particularly near end-of-life.
- Comprehensive symptom assessment (frequency, severity, distress) can improve patient care and symptom management.
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.
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