Surveillance and Reporting on End of Life Care for Persons Dying of Chronic Disease

Project Lead: Grace Johnston (PubMed articles)

Objectives: Develop and use population based surveillance methods to report on end of life care provision. Transfer the knowledge gained and exchange insights with researchers, clinicians and managers in district palliative care programs, provincial chronic disease programs and other strategic decision makers.


Lynn Lethbridge, 2011 - Canadian Association for Health Services and Policy Research (CAHSPR) Annual Conference
Utilizing Death Certificate Data for Health Servcies Planning: An Example Using Parkinson's Disease

Alison Zwaagstra, 2008 - ICE Work in Progress Session
• Nova Scotia Death Certificate Data Analysis for Chronic Diseases: NELS ICE Progress and Plans


Lethbridge, L., Johnston, G., Turnbull, G. (2013) Co-morbidities of persons dying of Parkinson's disease. Progress in Palliative Care, 21(3): 140-5(6).    *Free PMC article

Corkum, M., Urquhart, R., Kendell, C., Burge, F., Porter, G., Johnston, G. (2012) Impact of comorbidity and healthcare utilization on colorectal cancer stage at diagnosis: Literature review. Cancer Causes and Control, 23(2): 213-20.    *Free PMC article

Gao, J., Johnston, G.M., Lavergne, M.R., McIntyre, P. (2011) Identifying population groups with low palliative care program enrollment using classification and regression tree analysis. Journal of Palliative Care, 27(2): 98-106.
*Free PMC article

Lavergne, M.R., Johnston, G.M., Gao, J., Dummer, T.J.B., Rheaume, D.E. (2011) Variation in the use of palliative radiotherapy at end of life: Examining demographic, clinical, health service, and geographic factors in a population-based study. Palliative Medicine, 25(2): 101-10.    *Free PMC article

Lavergne, R., Johnston, G.M., Gao, J., Dumont, S., Burge, F. (2011) Exploring generalizability in a study of costs for community-based palliative care. Journal of Pain and Symptom Management, 41(4): 779-87.    *Free PMC article

Grunfeld, E., Urquhart, R., Mykhalovskiy, E., Folkes, A., Johnston, G., Burge, F., Earle, C., & Dent, S. (2008) Toward population-based indicators of quality end-of-life care: testing stakeholder agreement. Cancer, 112(10): 2301-8.
*Free PMC article.

Johnston, G. (2008). Palliative and end of life care for persons with advanced colorectal cancer: Basics upon which to build. Journal of Palliative Care, 24(3), 221.

Johnston, G., Burge, F., Kuziemsky, C., McIntyre, P., Kapra, J., & Gao, J. (2008) Minimum data set for palliative and end of life research in Nova Scotia, Canada. Palliative Medicine, 22(4): 554.

Johnston, G., Lawson, B., Gao, J., Burge, F., McIntyre, P., & Grunfeld, E. (2008) Predictors of palliative care program enrollment in Nova Scotia, Canada using new analytic methods for improved application and understanding. Palliative Medicine, 22(4): 418.

Grunfeld, E., Johnston, G., Mykhalovskiy, E., Cicchelli, L., McIntyre, P., Burge, F., et al. (2006) Quality indicators for end-of-life breast cancer care: is there agreement between stakeholder groups? Journal of Palliative Care, 22(3): 200.

Grunfeld, E., Lethbridge, L., Dewar, R., Johnston, G., Lawson, B., Burge, F., et al. (2006) Quality indicators for end-of-life breast cancer care: testing the use of administrative databases. Journal of Palliative Care, 22(3): 243.

Grunfeld, E., Lethbridge, L., Dewar, R., Lawson, B., Paszat, L. F., Johnston, G., et al. (2006) Towards using administrative databases to measure population-based indicators of quality of end-of-life care: testing the methodology. Palliative Medicine, 20(8): 769-77.    *Free PMC article

Johnston, G., Gao, J., Dewar, R., McIntyre, P., Orychock, D., Maddalena, V., et al. (2006) Palliative care service provision to adults dying of cancer in Halifax and Cape Breton, Nova Scotia, Canada. Journal of Palliative Care, 22(3): 244.

Johnston, G., Grunfeld, E., McIntyre, P., Maddalena, V., Rocker, G., Asada, Y., et al. (2006) Nova Scotia Network of End of Life Studies: Frameworks and methods for global interdisciplinary capacity enhancement on population access to quality palliative and end-of-life care. Journal of Palliative Care, 22(3): 244.