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Differences within how doctors, caregivers and patients report unwanted effects of cancer therapy

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A recently available study reveals differences in how symptom toxicity is reported for children receiving cancer treatment in clinical trials. Doctors often underestimate or miss a child’s symptoms, while caregivers have a tendency to overestimate symptoms.

Children’s Hospital LA was among nine hospitals that participated in the analysis. David R. Freyer, DO, MS, Director of the Survivorship and Supportive Care Program within the Cancer and Blood Disease Institute at CHLA, was the study’s lead author. The analysis, that was recently published in the Journal of Clinical Oncology, emphasizes the necessity for direct child self-reporting during treatment.

Of the 40,000 children receiving cancer treatment annually, a lot more than 60% be a part of . Research teams, regulatory agencies and patients depend on adverse event reports completed by doctors to find out a treatment’s safety and effect on standard of living. If reports don’t accurately convey unwanted effects, patients may continue receiving cancer therapies that cause excessive symptoms.

The analysis team collected symptom reports from 438 children aged 7 to 18, their doctors and their caregivers. Study participants included children with a number of cancer types from nine pediatric cancer centers in the united states. The study centered on 15 common symptoms during cancer treatment, including fatigue, nausea, vomiting, mouth sores, pain, sleep difficulties among others.

Dr. Freyer and the analysis team found significant differences between doctor and caregiver symptom reports when compared to child’s self-report. Agreement between child and doctor reports was only poor to fair. A lot more children reported symptoms than their doctors reported for them. Approximately 20-40% of children reported more serious symptoms than their doctors did. Normally, children reported doubly many symptoms as their doctors.

“These findings trust earlier studies, but our study’s size and design add strong weight. Over 400 patients with several various kinds of cancer participated, and we evaluated 15 symptoms both before and after treatment,” says Dr. Freyer.

Although this discrepancy put on all symptoms, doctor reporting was particularly low for fatigue, depression, anxiety and insomnia, which are difficult to see during an office visit. For instance, over 60% of children whose doctor reported no fatigue actually had fatigue. On the list of symptoms commonly missed were the ones that signal a dependence on change in clinical management, such as for example mouth sores and vomiting.

As opposed to doctor reports, parent or guardian reports tended to overestimate symptoms, including nausea, poor appetite, pain, fatigue and anxiety. Agreement between child and caregiver reports was somewhat better.

“Our findings show that child self-reports should complement doctor adverse event reporting whenever you can,” says Dr. Freyer. “Children are best in a position to identify and remember their very own symptoms throughout their cancer treatment.”

In times when the child struggles to self-report, doctors should think about input from caregivers. As the study didn’t include children younger than 7 yrs . old, the researchers believe caregiver reports would assist in these cases, too.

An invited editorial that accompanied the published study, authored by an oncologist at Seattle Children’s Hospital who was simply not section of this research, highlights the necessity for change. The review states that research has repeatedly described these same discrepancies in symptom reporting. To optimize pediatric cancer outcomes, research and clinical care must incorporate the child’s voice and experience directly. The editorial figured Dr. Freyer and his team have provided the required science and rationaleand now you have for change in research and clinical practice.

During every cancer clinical trial, doctors report symptoms patients experience utilizing the National Cancer Institute’s (NCI) Common Terminology Criteria for Adverse Events (CTCAE). The CTCAE assesses any harmful unwanted effects of cancer treatment. The NCI recently created a version of the measure that adults with cancer complete for themselves, capturing the patient’s experience directly. However, cancer trials for children usually do not currently use similar direct reporting measures. As yet, there’s been no version of the CTCAE adapted for children.

Within their preparatory work resulting in this study, the study team developed and validated a version of the CTCAE for children and their caregivers to perform. The measure captures both physical and mental health symptom unwanted effects of cancer treatment, ranking their severity on a scale of 0 to 3.

“Hopefully that future pediatric cancer clinical trials will incorporate direct child reporting using our measure or something similar,” says Dr. Freyer. “More accurate reporting will limit new treatment toxicity and help children and families decide which of two similar treatments is way better tolerated.”

Dr. Freyer and the analysis team have provided a deeper knowledge of how , their doctors and their caregivers perceive unwanted effects. The advantage of child self-reports likely goes beyond informing clinical trial toxicity assessment to improving their clinical care.

Research implies that routinely using direct symptom reporting from adult cancer patients improves toxicity assessment. Based on the study findings, a far more complete and accurate understanding of patient symptoms may help clinicians better understand the individual experience and improve care.

More info: David R. Freyer et al, Insufficient Concordance in Symptomatic Adverse Event Reporting by Children, Clinicians, and Caregivers: Implications for Cancer Clinical Trials, Journal of Clinical Oncology (2022). DOI: 10.1200/JCO.21.02669

Citation: Differences within how doctors, caregivers and patients report unwanted effects of cancer therapy (2022, August 26) retrieved 28 August 2022 from

This document is at the mercy of copyright. Aside from any fair dealing for the intended purpose of private study or research, no part could be reproduced minus the written permission. This content is provided for information purposes only.

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