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

Montgomery, Kathleen E. PhD, RN; Raybin, Jennifer L. MSN, RN; Ward, Jessica PhD, RN; Balian, Chelsea MSN, RN; Gilger, Elizabeth MSN, APRN; Li, Zhanhai PhD

doi: 10.1097/NCC.0000000000000721
Article: PDF Only

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 surveys and during the last 12 weeks of life. When present, symptoms with the highest composite scores included pain, sleeping difficulty, lack of appetite, and fatigue. During the last 12 weeks of life, the highest composite scores were associated with pain, sleeping difficulty, constipation, and fatigue. Pain, constipation, sleeping difficulties, and shortness of breath had higher reports of symptom distress 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 distressing symptoms during the last 12 weeks of life despite quality care.

Implications for Practice Assessment of symptom composite scores and distress scores when symptoms are present may allow clinicians to better understand and manage symptoms of most concern to the patient.

Author 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 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).

Financial support for this study was provided by the Alex’s Lemonade Stand Foundation for Childhood Cancer.

The authors have no conflicts of interest to disclose.

Correspondence: Kathleen E. Montgomery, PhD, RN, Department of Nursing, American Family Children’s Hospital, 1675 Highland Ave, Mail Code C400, Room 4118, Madison, WI 53792 (

Accepted for publication February 27, 2019.

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