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Original Investigation
August 24, 2020

Agreement Between Child Self-report and Caregiver-Proxy Report for Symptoms and Functioning of Children Undergoing Cancer Treatment

Author Affiliations
  • 1Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts
  • 2Center for Population Sciences, Dana-Farber Cancer Institute, Boston Children’s Hospital, Boston, Massachusetts
  • 3Department of Population Health Sciences, Duke University School of Medicine, Durham, North Carolina
  • 4Emory University, Atlanta, Georgia
  • 5Now with Clemson University School of Nursing, Clemson, South Carolina
  • 6Division of Palliative Medicine and Supportive Care, University of Pittsburgh School of Medicine, University of Pittsburgh Medical Center Children’s Hospital of Pittsburgh, Pittsburgh, Pennsylvania
  • 7Department of Nursing Research, Children’s National Health System, Washington, DC
  • 8Division of Quality of Life and Palliative Care, Department of Oncology, St Jude’s Children’s Research Hospital, Memphis, Tennessee
  • 9Division of Haematology/Oncology and Institute for Child Health Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada
JAMA Pediatr. 2020;174(11):e202861. doi:10.1001/jamapediatrics.2020.2861
Key Points

Question  To what extent do caregiver reports on child health-related quality of life align with child self-reports among children with cancer?

Findings  In this multicenter cohort study of 482 child-caregiver dyads at 9 pediatric cancer centers, agreement between Patient-Reported Outcomes Measurement Information System pediatric and parent-proxy reports was poor for symptoms (pain, fatigue, depression, anxiety, and psychological stress) and moderate for mobility. Caregivers consistently overestimated symptoms and underestimated function relative to child self-reports.

Meaning  Although caregiver report on pediatric health-related quality of life is often used in research and practice, these findings suggest that self-report best reflects the child’s experience and should be incorporated whenever possible.


Importance  Adult patients are considered the best reporters of their own health-related quality of life (HRQOL). Self-report in pediatrics has been challenged by a limited array of valid measures. Caregiver report is therefore often used as a proxy for child report.

Objectives  To examine the degree of alignment between child and caregiver proxy report for Patient-Reported Outcomes Measurement Information System (PROMIS) HRQOL domains among children with cancer and to identify factors associated with better child and caregiver-proxy congruence.

Design, Setting, and Participants  In this multicenter cohort study, children with a first cancer diagnosis and their caregivers completed surveys at 2 time points: within 72 hours preceding treatment initiation (T1) and during follow-up (T2), when symptom burden was expected to be higher (eg, 7-17 days later for chemotherapy). Data were collected from October 26, 2016, to October 5, 2018, at 9 pediatric oncology hospitals. Five hundred eighty children (aged 7-18 years) and their caregivers were approached; 482 child-caregiver dyads completed surveys at T1 (response rate 83%), and 403 completed surveys at T2 (84% of T1 participants). Data were analyzed from July 1, 2019, to April 22, 2020.

Exposures  Participants received up-front cancer treatment, including chemotherapy and radiotherapy.

Main Outcomes and Measures  Congruence between child self-report and caregiver-proxy report of PROMIS pediatric domains of mobility (physical functioning), pain interference, fatigue, depressive symptoms, anxiety, and psychological stress.

Results  Of the 482 dyads included in the analysis, 262 children (54%) were male (mean [SD] age, 12.9 [3.4] years), 80 (17%) were Black, and 71 (15%) were Hispanic. Intraclass correlations between child self-report and caregiver proxy report showed moderate agreement for mobility (0.57 [95% CI, 0.50-0.63]) and poor agreement for symptoms (range, 0.32 [95% CI, 0.24-0.41] for fatigue to 0.42 [95% CI, 0.34-0.50] for psychological stress). Children reported lower symptom burden and higher mobility than caregivers reported. In a multivariable model adjusted for child and parent sociodemographic factors and the caregiver’s own self-reported HRQOL, caregivers reported the child’s mobility score 6.00 points worse than the child’s self-report at T2 (95% CI, −7.45 to −4.51), exceeding the PROMIS minimally important difference of 3 points. Caregivers overestimated the child’s self-reported symptom levels, ranging from 5.79 (95% CI, 3.99-7.60) points for psychological stress to 13.69 (95% CI, 11.60-15.78) points for fatigue. The caregiver’s own self-reported HRQOL was associated with the magnitude of difference between child and caregiver scores for all domains except mobility; for example, for fatigue, the magnitude of difference between child and caregiver-proxy scores increased by 0.21 (95% CI, 0.13-0.30) points for each 1-point increase in the caregiver’s own fatigue score.

Conclusions and Relevance  This study found that caregivers consistently overestimated symptoms and underestimated mobility relative to the children themselves. These results suggest that elicitation of the child’s own report should be pursued whenever possible.

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