Symptom Burden

What is the Symptom Burden Project?

With Symptom Burden project we aim to describe the progression (trajectories) of burdensome symptoms in nursing home residents in the last year of life. We compare these trajectories between residents with and without dementia, and between residents in high and low context facilities. The project is also seeking to develop a rating for burdensome symptoms, and a rating for potentially inappropriate care practices at the end of life. In partnership with our stakeholders we are developing a set of recommendations for action.

This project is important because residents with dementia frequently receive interventions inconsistent with an optimal end of life approach to care and suffer unnecessarily from distressing symptoms. Lowering symptom burden in nursing home residents at the end of life is an urgent and achievable goal. Few published reports describe symptom burden; none examine links between symptom burden and modifiable features of work environments. 

What does it involve?

  • Identify groups of residents with different symptoms and functional patterns (trajectories) and their fluctuations in the period before death
  • Identify modifiable elements of these patterns
  • Explore the influence of contextual factors on these patterns
  • Explore options for altering modifiable components of these trajectories

Our tools are

  • Five years of TREC 1.0 RAI-MDS 2.0 data
  • Two waves of TREC 1.0 contextual and staff characteristics data
  • The literature
  • An expert panel
  • Consultation with key stakeholders
  • Feedback and discussion with the TREC team and external constituents

Emerging Findings

We assessed six symptoms (dyspnea, pain, pressure ulcer, urinary tract infections, challenging behavior, delirium) and one inappropriate practice (use of antipsychotics with residents without psychosis) in detail. We found that these treatable symptoms increased as the end of life approached and found significant differences between persons with and without dementia and between facilities with high and low context (quality work environments). We have completed ranking a set of burdensome symptoms and a set of potentially inappropriate practices with clinical experts and have developed a preliminary method of visually presenting these rankings.


Estabrooks CA, Hoben M, Poss JW, Chamberlain SA, Thompson GN, Silvius JL, Norton PG. (2015). Dying in a nursing home: Treatable symptom burden and its link to modifiable features of work context. Journal of the American Medical Directors Association.

The Symptom Burden Project in the Media

CTV's Alberta Prime Time. (April 7, 2015). Michael Higgins (Host). Improving pain management for seniors[Television broadcast]. Edmonton, AB.

Richard Catangay-Liew. (April 7, 2015). Dying in a nursing home: Researcher measures distressing symptoms of seniors. The Gateway: Edmonton, AB.

Poffenroth Y. (March 30, 2015). Dying in a nursing home: Treatable medical symptoms linked to work environment in nursing homes, UAlberta study shows. University of Alberta, Faculty of Nursing News: Edmonton, AB.

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