Parents and others who are caring for children being treated for cancer consistently rated the child’s symptoms and functional ability worse than the children themselves on health-related quality of life (HRQOL) measures, results from questionnaires taken from both have shown.
In a cohort of 482 child-caregiver dyads, intraclass correlation (ICC) between child self-reports and caregiver proxy reports showed poor agreement of less than 0.50 for all symptom domains, Jennifer Mack, MD, MPH, Dana-Farber Cancer Institute, Boston, Massachusetts and colleagues observed in JAMA Pediatrics.
The ICCs for mobility were in the moderate agreement range of 0.48 (95% CI, 0.37-0.60) to 0.68 (95% CI, 0.58-0.77), depending on the child’s age, the authors added.
“Non-agreement of child and caregiver perceptions could result in undertreatment of symptoms if they are not recognized or overtreatment if the caregiver perceives a higher symptom burden than the child is experiencing,” Mack and colleagues pointed out.
“[T]hese findings suggest that self-report best reflects the child’s experience and should be incorporated whenever possible,” they concluded.
Children with cancer and their caregivers from 9 pediatric oncology centers took part in the study.
Both the child and their caregiver completed the Patient-Reported Outcomes Measurement Information System (PROMIS) which covers symptoms and the patient’s ability to function across not just cancer but a broad range of diseases and conditions.
Children were being treated with either surgery, chemotherapy, radiotherapy or bone marrow transplantation for a variety of cancers.
“Children and caregivers completed questionnaires at two points,” investigators noted—the first point being within 72 hours preceding initiation of treatment when symptom burden was expected to be low (T1) and the second time point when treatment had been initiated and the child would be expected to have a higher symptom burden (T2).
The PROMIS report itself assesses mobility as a measure of function as well as pain interference, fatigue, depressive symptoms, anxiety and psychological stress.
In terms of agreement for both symptoms and function between the child’s own and their caregiver’s report, “[t]here were no statistical differences by age group,” the authors reported, although the youngest children had some of the lower ranges of agreement between the 2 reports (0.25 (95% CI, 0.14-0.41) to 0.48 (95% CI, 0.37-0.60).
However, within stratified age groups, “children consistently reported lower scores than caregivers for pain interference, fatigue, depressive symptoms, anxiety and psychological stress and higher scores for mobility,” Mack and colleagues noted.
On the other hand, the differences between the child’s self-report and the caregiver’s proxy report were smaller when children were expected to have a lower symptom burden at T1 than when they were expected to have a higher symptom burden at T2, investigators noted.
There was also better agreement between the child’s self-report and the caregiver’s proxy report for mobility for older children as well as fatigue and psychological stress for girls compared to boys.
In contrast, agreement between the two reports was also worse for pain interference and fatigue for Asian children compared with white children, investigators added.
Reports from caregivers with an educational level of high school or less also had better agreement with the child’s report for mobility, fatigue and anxiety, researchers noted.
- Mobility: 1.81-point difference (95% CI, 0.02-3.59).
- Fatigue: 0.21-point difference (95% CI, 0.13-0.30).
- Anxiety: 0.35-point difference (95% CI, 0.27-0.42).
Importantly as well, “the caregiver’s self-reported HRQOL had a significant influence on all domains except mobility, suggesting that when caregiver HRQOL is poorer, they have larger proxy-report differences with [their] child’s self-report,” Mack and colleagues noted.
These findings raise the question as to whose report best reflects the child’s true experience as they go through cancer therapy.
For example, caregivers who are sad or worried about their child’s fate may well ascribe more sadness or worry to their child simply because of their own heightened concerns about their child.
The difference between the caregiver’s assessment of the child’ fatigue also increased by 0.21 points (95% CI, 0.13-0.3) for each 1-point increase in the caregiver’s own fatigue score.
“Our findings suggest that proxy reporting is influenced by the proxy’s personal experience of symptoms and function as well as the child’s experience,” the authors suggested.
“Given that overestimation of symptoms by caregivers may result in overtreatment of symptoms…our findings underscore the importance of allowing children to speak to their own experiences, about which they are the experts,” they concluded.
Commenting on the findings, Allison Leahy, MD, Children’s Hospital of Philadelphia in Pennsylvania, and Angela Steineck, MD, Children’s Hospital, Seattle, Washington, pointed out that the use of patient-reported outcomes in which symptoms and adverse effects from treatment are described is rare in pediatric oncology.
“Enabling self-report in this population is [however] important because we know that children can underreport their symptom severity during the clinical interview to avoid complaining or ’bothering’ the physician or in an effort to protect their family from worry,” Leahy and Steineck observed.
Evidence also suggests that children simply accept whatever symptoms they develop as a necessary part of their cancer treatment and don’t feel they need to talk about these symptoms with their caregivers.
As the editorialists pointed out, it is generally accepted that children who are 8 years of age or older are able to accurately report their symptoms and measures such as the HRQOL report used in the current study are valid for even younger children.
Thus, “any discrepancy between child and proxy report should not be fully attributed to child miscomprehension of the questions,” the editorialists cautioned, underscoring again that “[p]roxy report of symptoms is influenced not just by the child’s experience but by the proxy’s own health state and, perhaps, their own expectation for illness and symptom trajectory,” they wrote.
“Determining how best to incorporate the child’s voice into their care is essential…and ultimately [will] lead to better clinical outcomes,” they concluded.
Caregiver reports of symptoms and function while their child was receiving treatment for cancer were consistently worse than reports from the children themselves.
Poor agreement between child and caregiver perceptions of symptoms and function could result in undertreatment if symptoms are not recognized and overtreatment if symptoms are overestimated.
Pam Harrison, Contributing Writer, BreakingMED™
Mack reported receiving grants from the National Cancer Institute.
The editorialists had no conflicts of interest to disclose.
Cat ID: 138
Topic ID: 85,138,730,935,138,192