Wednesday, April 27, 2022

Navigating Uncharted Territory: Setting Sail Towards Understanding Pediatric Distress During Cancer Treatment

Christa Teller MSN, RN, OCN, CPHON

PhD Student, College of Nursing

University of Utah

WHAT IS DISTRESS?

In 2021, it was estimated that 15,590 children between the ages of 0 and 19 years old 

would be diagnosed with cancer (Cancer in children and adolescents, n.d.). It’s 

understandable that this time period can present multiple stressors for a patient and 

their family, but how can healthcare teams tell when too much is too much? What 

aspects of distress are identifiable and present an opportunity for interventions that can 

improve the quality of patient care and the patient’s symptom experience? Distress is 

normal and can occur at any point during the cancer care continuum. The National 

Comprehensive Cancer Network (NCCN) defines distress as an unpleasant experience 

that is mental, physical, social and/or spiritual in origin (Distress During Cancer Care, 

2020).

Distress can be mild, severe, or anywhere in between and can vary throughout the 

patient’s cancer care continuum. While symptoms of distress like sadness, fear, worry, 

anger, and anxiety are commonly found during specific times, such as diagnosis, it is 

the impact of unidentified, late identified, and unmet psychosocial needs that result in a 

significant impact on the quality of life and symptom experience (Distress During Cancer 

Care, 2020). The subjective nature of distress requires an individualized approach and 

not a “one size fits all” tactic to screening distress.


DISTRESS SCREENING: PROTECTION DURING THE STORM

Distress can vary from patient to patient, diagnosis to diagnosis, and moment to 

moment. So how can potentially extreme levels of distress brewing on the horizon be 

detected when distress, in general, is a common occurrence during and after a cancer 

diagnosis? In Canada, distress is recognized as the 6th vital sign, demanding to be 

frequently screened and assessed, especially among cancer patients. The NCCN 

developed the Distress Thermometer (DT) to provide healthcare teams with the ability 

to screen for distress and allow them to assess the “people part” of cancer care 

(Holland & Bultz, 2007). Each person has a level of defense or resistance, allowing 

them the ability to cope with mild to moderate distress, similar to an umbrella that keeps 

rain from overwhelming the person below. However, if that umbrella was met with more 

extreme bouts of rain, its level of protection permeable to the assault from above, the 

person below will fill the bitter sting of the storm around them. 

The NCCN published guidelines for distress screening at diagnosis and at every clinical 

touchpoint to detect distress, unmanaged distress, and identify when interventions are 

necessary. The goal of earlier identification and intervention is to improve the quality of 

life and overall outcomes in patients diagnosed with cancer (Riba et al., 2019). With a 

range from 46.2% to 65.9% of cancer patients experiencing high or extreme levels of 

distress, there is an essential need to identify and address these levels of distress to 

prevent long term effects that can negatively impact the quality of life during treatment 

and into survivorship (Peters et al., 2020). Additionally, the absence of screening and 

unmanaged allows a patient to be vulnerable to the negative aspects of mortality and 

morbidity, and a decrease in quality of life (Ercolano et al., 2018). With the protection of 

the distress thermometer and frequent screenings, healthcare teams can effectively 

screen for distress outside the times when symptoms are assumed most burdensome, 

as distress can continue to exist, even in the absence of apparent symptoms and 

symptom severity. Symptoms of distress do not need to be frequently reported or 

appear severe to result in high levels of distress for the patient (Linder, Al-Qaaydeh, & 

Donaldson, 2018). 

Currently, the American College of Surgeons Commission on Cancer (ACoS CoC) has 

standards that facilities adopt to obtain accreditation. These standards are vague and 

cast a hazy view of how healthcare teams can most effectively identify and manage 

distress in pediatric oncology patients (Optimal Resources for Cancer Care, 2021). The 

ACoS CoC offers accreditation with what appears to be more of a “one size fits most” 

approach, standing in contrast to the individualized patient-centered care known to 

provide patients with the best options for improved care, quality of life, and outcomes. 


CHANGING COURSE TO PROMOTE OPTIMAL PATIENT CARE INSTEAD OF 

ANCHORING IN ACCREDITATION

Accreditation does not equate to optimal patient care. Accreditation can be acquired by 

doing just enough, meeting the requirements while not impacting patient care, quality of 

life, and patient outcomes. Facilities that seek accreditation may unintentionally 

overlook the effects of their quest on their patients. If accreditation standards are not 

clear, well-defined, and concise, the healthcare team may not see the chance to truly 

impact patient care. Individualized patient-centered care should efficiently suggest that 

all care, including distress screenings, be personalized. Forgoing the “one size fits all” 

approach to screenings will result in individualized screenings, developed and adapted 

to each patient’s needs.


REFERENCES

Cancer in children and adolescents. National Cancer Institute. (n.d.). Retrieved February 5, 

2022, from https://www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-factsheet

Distress During Cancer Care. National Comprehensive Cancer Network. (2020). Retrieved 

           April 25, 2022, from https://www.nccn.org/patients/guidelines/content/PDF/distresspatient.pdf

Ercolano, E., Hoffman, E., Tan, H., Pasacreta, N., Lazenby, M., & McCorkle, R. (2018). 

           Managing psychosocial distress comorbidity: Lessons learned in optimizing psychosocial 

           distress screening program implementation. Oncology. 32(10): 488-493.

Holland, J. & Bultz, B.(2007) The NCCN guideline for distress management: A case for making 

           distress the sixth vital sign. Journal of National Comprehensive Cancer Network. 5(1):3-7. 

Linder, L., Al-Qaaydeh, S., & Donaldson, G. (2018). Symptom characteristics among 

           hospitalized children and adolescents with cancer. Cancer Nursing. 41(1): 23-32.

           https://doi.org/10.1097/NCC.000000000000469

Optimal Resources for Cancer Care, 2020 Standards. American College of Surgeons. (2021). 

Retrieved April 25, 2022, from https://www.facs.org/Quality-Programs/Cancer/news/2020-standards-020921

Peters, L., Brederecke, J., Franzke, A., de Zwaan, M., & Zimmermann, T. (2020). Psychological 

           Distress in a Sample of Inpatients With Mixed Cancer-A Cross-Sectional Study of Routine 

           Clinical Data. Frontiers in psychology, 11, 591771. 

           https://doi.org/10.3389/fpsyg.2020.591771

Riba, M., Donoban, K., Andersen, B., Braun, I., Breibart, W., Brewer, B., Buchmann, L., Clark, 

           M., Collins, M., Corett, C., Fleishman, S., Garcia, S., Greenberg, D., Handzo, G., 

       Hoofring, L., Huang, C., Lally, R., Martin, S., McGuffey, L., Mitchel, W.,…Darlow, S. 

           (2019). Journal of the National Comprehensive Cancer Network, 17(10), 1229-1249. 

           https://doi.org/10.6004/jnccn.2019.04

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