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.
- NELS News, Issue 2 [PDF]
- End of Life Care in Nova Scotia: Surveillance Report [PDF]
- Canadian Cancer Statistics 2010 - Special topic End of Life by the Canadian Cancer Society's Steering Committee [PDF]
- 3x3 NELS Project:
Chronic Disease and Palliative Care Program Data Linkage and Analysis
Lynn Lethbridge, 2010
• Congestive Heart Failure Disease Mortality in Nova Scotia, 1998 to 2005
Alison Zwaagstra, 2008-10
• Cancer Mortality in Nova Scotia, 1998 to 2005
• Children and Youth Deaths in Nova Scotia, 1998 to 2005
• Colchester County, NS Mortality Statistics, 1998 to 2005
• Chronic Obstructive Pulmonary Disease (COPD) in Nova Scotia, 1998 to 2005
• Diabetes Mortality in Nova Scotia, 1998 to 2005
• Multiple Sclerosis Mortality in Nova Scotia, 1998 to 2005
• Parkinson's Disease Mortality in Nova Scotia, 1998 to 2005
• Renal Disease Mortality in Nova Scotia, 1998 to 2005
Junaid Kapra, 2008
• Palliative Care Program Data in District Health Authorities 1- 7 in Nova Scotia
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
Grace Johnston, Lynn Lethbridge, Judith Fisher, et al., 2011
• Planning for Palliative Care: An analysis of associations between causes of death
Grace Johnston, Alison Zwaagstra, David Henderson, et al., 2010
• Using Vital Statistics Death Data for Hospice Palliative Care Planning: An example from Nova Scotia, Canada
Alison Zwaagstra, Grace Johnston and Ahmad A. Tarakji, 2010
• Renal Disease Mortality in Nova Scotia From 1998 to 2005: A Descriptive Analysis Using Both Underlying and Multiple Causes of Death
Grace Johnston, Jun Gao, Dorianne Rheaume, et al., 2008
• Palliative radiotherapy: Associations with age and nursing home residency for adults dying of cancer in Nova Scotia, 2000-2005
Grace Johnston, Fred Burge, Alison Zwaagstra, et al., 2008
• Minimum data set for palliative and end of life research in Nova Scotia, Canada
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.