The assessment of symptoms and treatment toxicity experienced by children and adolescents with cancer has evolved into its own science over the past 5 decades. Traditionally, formal symptom or toxicity reporting has been and continues to be performed by the treating clinicians. However, there has been recognition of the value of the patient and/or family caregiver perspective.1 Significant advances include new self-report and/or caregiver-report measures, such as measures of a single symptom, multiple symptoms, or larger item libraries allowing investigators or clinicians the selection of appropriate subset of symptoms or adverse events specific to certain cancer therapies.2,3 Over time, studies have documented discrepancies between what the child and/or adolescent reports and what the clinicians or caregivers report in terms of presence and intensity of symptoms and toxicities. These study findings have shifted the focus from clinician-only reporting to child/adolescent self-reporting being labeled the “gold standard.”4 Notice, however, that although the gold standard has shifted from clinician to child/adolescent report, the standard remains that only 1 voice informs decision making.
The standard practice of a single voice is reflected even in studies that include multiple voices (eg, the clinician, family caregiver, and pediatric patient) when such terms as “more valid,” “more accurate,” or “right or wrong” are used to explain the discordance in scores among the multiple voices and to justify using only 1 voice. We refute this descriptive language when different voices have discrepancies in reports of symptom and toxicity ratings. One voice, perhaps the child’s or adolescent’s, is neither more accurate, nor right or wrong, than the clinician’s and caregiver’s voices. Each voice provides an important perspective of what the child is experiencing based on their impressions, comparisons, mood, and values. This diversity of perspectives provides us with important and relevant background information that when put together could guide and improve cancer care and treatment.
We have used the theory of unpleasant symptoms in our symptom and treatment toxicity studies involving the child, family caregiver, and clinician all giving their reports.5,6 We like the theory’s attention to the internal experience of distressing symptoms or toxicities (frequency, location, intensity), the external factors that can influence the internal experience, and the functional outcomes adversely affected by the distressing internal experience. This theory offers us several key intervention targets to reduce or minimize the distressing experience. That alone is quite important to our research; what is also of importance is that this theory supports attending to multiple voices addressing symptoms and toxicities during the pediatric cancer treatment experiences.
We believe listening to the voices from those that know the child (including the child’s voice) is essential, because each contributes complementary clinically relevant information. Only the diagnosed child can disclose to us his/her internal experience of subjective symptoms and toxicities secondary to treatment. Only the family caregiver can describe the functional impact of the diagnosis and/or the most recent treatment on the child or adolescent in diverse settings (eg, home, school), allowing us to see treatments’ impact over time. Only the clinician can compare how this child or adolescent is faring compared with all others enrolled in the same clinical trial and at the same point in treatment.
We need this triad of voices to accurately and fully grasp and then address the pediatric oncology symptom and toxicity experiences. To achieve this important end, we need to remove any marginalization of voices in preference for one over the others. We shall all need to convince each other that all voices add to our understanding of the disease and cancer therapy’s impact. Our goal by including multiple voices is not to reach consensus on one rating or score but to capture the diversity of perspectives and to recognize their source and priorities as we try to achieve a deeper understanding and appreciation of the cancer therapies’ impact on the pediatric patient and the family through their symptom and toxicity experiences over time.
How, then, in real time, do we listen to the multiple voices without hearing a clinically overwhelming cacophony of differing perspectives that makes us avoid soliciting multiple voices? The simplicity of one voice in reporting the impact of cancer therapies may override the need to appreciate and address the diverse multiple voices when treating quite ill children and their families. We fully expect that we, as clinicians and researchers, will be uncertain initially about how to include the different voices into an actionable treatment plan moving forward. We shall need to develop clinical strategies for discussing the diverse perspectives and what they mean for care of this ill child at this time. Of special importance, we shall need to convey how seriously we take and value each voice’s contribution. When we value and integrate the cultivation and appreciation of this 3-voice harmony, we increase the likelihood that those speaking their own voice will value having all three as well.
Our very best to you,
Pamela S. Hinds, PhD, RN
Department of Nursing Science
Professional Practice & Quality
Children’s National Hospital
Daniel H. Grossoehme, DMin, MS
Haslinger Family Pediatric Palliative Care Center
Akron Children’s Hospital
Bryce B. Reeve, PhD
Center for Health Measurement
Department of Population Health Sciences
Department of Pediatrics
Duke Cancer Institute
Duke University School of Medicine
Durham, North Carolina
1. US Department of Health and Human Services FDA Center for Drug Evaluation and Research; U.S. Department of Health and Human Services FDA Center for Biologics Evaluation and Research; U.S. Department of Health and Human Services FDA Center for Devices and Radiological Health. Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims: draft guidance. Health Qual Life Outcomes
2. Reeve BB, McFatrich M, Mack JW, et al. Validity and reliability of the pediatric patient-reported outcomes version of the common terminology criteria for adverse events. J Natl Cancer Inst
3. Reeve BB, McFatrich M, Lin L, et al. Validation of the caregiver pediatric patient-reported outcomes version of the common terminology criteria for adverse events measure. Cancer
4. Murugappan MN, King-Kallimanis BL, Reaman GH, et al. Patient reported outcomes in pediatric cancer registration trials: a US Food and Drug Administration perspective. J Natl Cancer Inst
5. Silva-Rodrigues FM, Hinds PS, Nascimento LC. The theory of unpleasant symptoms in pediatric oncology nursing: a conceptual and empirical fit?J Pediatr Oncol Nurs
6. Hinds PS, Wang J, Cheng YI, et al. PROMIS pediatric measures validated in a longitudinal study design in pediatric oncology. Pediatr Blood Cancer