Volume 69, Issue 12 e29986
PSYCHOSOCIAL & SUPPORTIVE CARE: RESEARCH ARTICLE

Longitudinal use of patient reported outcomes in pediatric leukemia and lymphoma reveals clinically relevant symptomatic adverse events

Shana S. Jacobs

Corresponding Author

Shana S. Jacobs

Children's National Health System, Washington, District of Columbia, USA

Correspondence

Shana Jacobs, Childrens National Hospital, 111 Michigan Ave NW, Washington DC 20010, USA.

Email: [email protected]

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Janice S. Withycombe

Janice S. Withycombe

Clemson University School of Nursing, Clemson, South Carolina, USA

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Sharon M. Castellino

Sharon M. Castellino

Emory University Department of Pediatrics, Aflac Cancer and Blood Disorders center, Children's Healthcare of Atlanta, Atlanta, Georgia, USA

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Li Lin

Li Lin

Duke University School of Medicine, Durham, North Carolina, USA

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Jennifer W. Mack

Jennifer W. Mack

Dana-Farber Cancer Institute/Boston Children's Hospital, Boston, Massachusetts, USA

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Molly McFatrich

Molly McFatrich

Duke University School of Medicine, Durham, North Carolina, USA

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Justin N Baker

Justin N Baker

St. Jude Children's Research Hospital, Memphis, Tennessee, USA

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David R. Freyer

David R. Freyer

Children's Hospital Los Angeles, Los Angeles, California, USA

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Scott H. Maurer

Scott H. Maurer

UPMC Children's Hospital of Pittsburgh and University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania, USA

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Catriona Mowbray

Catriona Mowbray

Children's National Health System, Washington, District of Columbia, USA

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Pamela S. Hinds

Pamela S. Hinds

Children's National Health System, Washington, District of Columbia, USA

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Bryce B. Reeve

Bryce B. Reeve

Duke University School of Medicine, Durham, North Carolina, USA

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First published: 24 September 2022
Citations: 1

Abstract

Background

Leukemia and lymphoma (LL) are the most common cancer diagnoses of childhood with high survival rates, but not without impact on the child's functioning and quality of life. This study aimed to use patient-reported data to describe the symptomatic adverse event (AE) experiences among children with LL diagnoses.

Methods

Two hundred and fifty seven children and adolescents aged 7–18 years with a first LL diagnosis completed the Pediatric Patient-Reported version of the Common Terminology Criteria for Adverse Events (Ped-PRO-CTCAE) and Patient-Reported Outcome Measurement Information System (PROMIS) Pediatric measures before starting a treatment course (T1) and after the treatment (T2).

Results

Fatigue was the most severe AE (68.1% at T1; 67% at T2) and caused the most interference over time. Gastrointestinal AEs were also quite common (e.g., nausea 46.3% at T1 and 48.9% at T2; abdominal pain 42.4% at T1; 46.5% at T2). In general, symptoms were present both at T1 and T2 and did not change significantly in severity or interference. The prevalence of AEs varied by LL disease group (e.g., nausea was most common in acute lymphoblastic leukemia (ALL), fatigue was most severe in ALL and Hodgkin Lymphoma (HL), acute myeloid leukemia had the fewest AEs).

Conclusion

Despite current supportive care regimens, many children with LL continue to report fatigue, pain, insomnia, and gastrointestinal symptoms as the most frequent or severe symptoms during therapy.

CONFLICT OF INTEREST

The authors declare that there is no conflict of interest that could be perceived as prejudicing the impartiality of the research reported.

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