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Patient-reported symptom severity among 22,650 cancer outpatients in the last 6 months of life

Bubis LD, Davis LE, Canaj H, Gupta V, Jeong Y, Barbera L, Li Q, Moody L, Karanicolas PJ, Sutradhar R, Coburn NG, Mahar AL. J Pain Symptom Manage. 2020; 59(1):58-66.e4. Epub 2019 Aug 17. DOI: 10.1016/j.jpainsymman.2019.08.016.


Context — Understanding the magnitude and risk factors for symptom burden of patients with cancer at the end of life is critical to guiding effective patient- and system-level interventions.

Objectives — We aimed to estimate the prevalence of severe patient-reported symptoms among cancer outpatients during the six months before death and to identify patient groups at a higher risk for reporting severe symptoms.

Methods — This was a retrospective cohort study of cancer decedents at regional cancer centers from 2010 to 2016. Patient-reported Edmonton Symptom Assessment System (ESAS) scores from the last six months of life were linked to administrative databases. The proportion of patients reporting severe symptom scores (≥7) for anxiety, depression, drowsiness, lack of appetite, nausea, pain, shortness of breath, tiredness, and overall well-being during the six months before death was described. Multivariable modified Poisson regression analyses were used to identify risk factors for reporting severe symptom scores.

Results — Of 39,084 cancer decedents, 22,650 had one or more symptom assessments recorded in the last six months of life, resulting in 92,757 ESAS assessments. Severe scores were highest for tiredness (56%), lack of appetite (46%), and impaired well-being (45%). The proportion of patients reporting severe symptom scores was stable before progressively increasing at three months before death. Elderly, women, patients with high comorbidity, immigrants, and living in urban areas or with high material deprivation were at increased risk of reporting severe scores.

Conclusions — Despite an integrated symptom screening program, rates of severe patient-reported symptom scores before death were high for outpatients with cancer. Patient subgroups at increased risk of severe symptom burden may benefit from targeted interventions. Ongoing review of routinely collected symptom data may be used to assess the supportive care needs and guide targeted interventions at the health-system level.

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