Caregivers May Overestimate Symptom Severity for Kids With Cancer

By Lisa Rapaport

August 25, 2020

(Reuters Health) - Parents and caregivers of children undergoing cancer treatment may overestimate the severity of patients' symptoms and underestimate how well kids are able to get around despite their diagnosis, a new study suggests.

Researchers examined data on symptoms experienced by 482 newly diagnosed childhood cancer patients before treatment initiation and again afterward, based on responses from children and their adult caregivers on the Patient-Reported Outcomes Measurement Information System (PROMIS) for health-related quality of life (HRQOL).

When researchers looked at intraclass agreement between child self-reported symptoms and caregiver-reported symptoms, they found moderate agreement for mobility (0.57, 95% CI 0.50-0.63) but poor agreement for symptoms like fatigue (0.32, 95% CI 0.24-0.41) and psychological stress (0.42, 95% CI 0.34-0.50).

"These findings argue for inclusion of the child's voice whenever possible, because they suggest that children are the best reporters on their own experiences," said lead study author Dr. Jennifer Mack, of Harvard Medical School, Dana-Farber Cancer Institute and Boston Children's Hospital.

"This applies to clinical care, when clinicians talk with children and parents about how the child is feeling, and research, when symptom experiences are tracked as part of clinical trials and other aspects of research," Dr. Mack said by email.

After treatment initiation, caregivers reported mobility scores for children that were 6.00 points lower than the child's self-reported mobility scores (95% CI, -7.45 to -4.51), with greater than 3.00 points considered a meaningful difference.

Caregivers overestimated symptoms, compared with what children self-reported, by a range starting as low as 5.79 points for psychological stress and as high as 13.69 points for fatigue.

When caregivers reported their own symptoms - such as fatigue - that negatively impacted caregivers' health-related quality of life, they also tended to report worse symptoms for their children, the study also found.

"Like the child, they are anxious, worried, sad, tired, not sleeping well, and likely many other things," said senior study author Bryce Reeve, of the Duke University School of Medicine and the Duke Cancer Institute in Durham, North Carolina.

"Thus, one reason for the differences in perception is that parents may project some of their own feelings onto the child, seeing the child as worried, for example, when they themselves are especially worried," Reeve said by email.

Most of the children received chemotherapy, but not radiation, and results could differ based on treatment regimens, the study team notes in JAMA Pediatrics. Researchers also lacked data on whether surveys were administered at home or in a clinic setting.

Even so, the results suggest that clinicians should allow children to self-report their own symptoms whenever possible, said Dr. Allison Barz Leahy of the Cancer Center at Children's Hospital of Philadelphia and the Perelman School of Medicine at the University of Pennsylvania.

Very few oncologists currently do this as part of their routine practice, Dr. Leahy, who coauthored an editorial accompanying the study, said by email.

"In adult cancer patients with advanced cancer, the clinical use of patient-reported outcome measures to track and intervene on symptoms has demonstrated striking benefits, including better quality of life, fewer ER visits and hospitalizations, and a survival benefit," Dr. Leahy said.

"Clinicians and researchers are now learning how to adapt this work to the pediatric population, which has the complication of including multiple developmental stages and the question of how to handle proxy reports from caregivers," she added.

SOURCE: and JAMA Pediatrics, online August 24, 2020.