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.
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