LINKED DATA REVEAL HOW PERSONS DYING OF BREAST CANCER DIFFER FROM THOSE DYING OF ALL CANCERS AND NON-CANCER DISEASES

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1 LINKED DATA REVEAL HOW PERSONS DYING OF BREAST CANCER DIFFER FROM THOSE DYING OF ALL CANCERS AND NON-CANCER DISEASES Grace Johnston 1,2, Lynn Lethbridge 1, Robin Urquhart 1,3, Maureen MacIntyre 2, 1. Dalhousie University, 2. Cancer Care Nova Scotia, 3. Capital Health Halifax, Nova Scotia, Canada June 25, 2014 North American Association of Central Cancer Registries Ottawa, Canada

2 Background Breast Cancer: Persons diagnosed with breast cancer are younger and have longer survival than for many other cancers Survivor language and perspective can undermine attention on planning for palliative support among those with metastatic cancer and life-threatening non-cancer diseases Surveillance: Surveillance for breast cancer screening and treatment has improved Less attention to surveillance for persons dying of breast cancer

3 Study Purpose Examine characteristics of persons in Nova Scotia (NS) dying of breast cancer compared to: o all cancer decedents, and o those dying of non-cancer diseases

4 Methods Study population: All NS deaths: , n = 121,458 Up to 13 causes of death Three Palliative Care Programs (PCPs) cover 65% of NS population

5 Study Data Development Nova Scotia Vital Statistics Death Certificate Data ( ); Data used: Demographics, All causes of death, place of death Registry data from 3 NS Disease Programs: cancer, diabetes, cardiovascular Data Used: registered or not Probabilistic record linkage PCP Enrollment Data Data Used: enrolled in PCP or not, time from PCP enrollment to death Study Dataset

6 Population Characteristics Characteristic Breast Cancer n=3,398 Cause of Death Cancer n=39,091 Non-Cancer n=82,367 % of all deaths 2.8% 32.2% 67.8% Mean age (years) % female 98.8% 46.4% 51.0% Average # of causes of death

7 Age Distributions Breast cancer 23.1% 65.7% 11.2% Age groups (years) Cancer 16.7% 76.5% 6.5% Non-cancer 12.8% 67.0% 18.3% 0% 20% 40% 60% 80% 100%

8 Percent in Nursing Homes Over Time 30.0% 25.0% 20.0% 15.0% 10.0% All Deaths Any Cancer Any Cancer-females Breast Cancer 5.0% 0.0%

9 70% of persons at end of life wish to die at home, if palliative support is adequate* However, in NS, 60.7% of the breast cancer decedents died in hospital, and 17% in a nursing home *NELS News (2011) Issue 5. NELSnews_05.pdf Location of Death, % 70.0% 70.0% 62.1% 60.7% 60.0% 50.0% 40.0% 30.0% 20.0% 10.0% 0.0% 20.6% 21.1% 22.4% 17.3% 17.0% 8.9% All Deaths Any Cancer Breast Cancer hospital nursing home others

10 Location of Death over time for Breast Cancer Decedents 80.0% 70.0% 60.0% 50.0% 40.0% 30.0% 20.0% hospital nursing home other 10.0% 0.0%

11 Palliative Care Program Enrollment Palliative Care Program Enrollment Cause of death Breast Cancer Cancer Non-Cancer % yes 65.8% 66.7% 9.2% Among yes, % enrolled within two weeks of death 21.4% 22.9% 49.9%

12 Non-Cancer Causes of Death Non-Cancer Causes of Death Study Subjects by Cause of Death Breast Cancer Cancer Non-Cancer Sudden Death 0.7% 0.7% 7.7% Cardiovascular 12.0% 11.6% 41.0% Chronic Obstructive Pulmonary Disease 3.7% 7.9% 13.2% Diabetes 6.6% 6.0% 12.7% Renal 3.5% 4.6% 10.7% Dementia 6.9% 3.4% 13.5%

13 Nova Scotia Disease Registries Registry Date Commenced Cancer 1964 Diabetes Cardiovascular Renal G Johnston, L Lethbridge, P Talbot, P Dunbar P, et al (2014) Importance of identifying persons with diabetes who could benefit from palliative care. Canadian Journal of Diabetes. in press 2. P Brar, G Johnston, L Lethbridge, N Gill, et al (Sept 2014) Estimating need for advance care planning for persons at end of life with cardiovascular disease, 20th International Congress on Palliative Care. Montreal 3. Nova Scotia Renal Program (May 2012) Renal End of Life Care Stakeholder Forum.

14 Breast Cancer Decedents over time in Cardiovascular and Diabetes Registries 25.0% 20.0% 15.0% 10.0% diabetes CV 5.0% 0.0% Important to know all prevalent comorbid diseases. Example: For persons at end of life who have diabetes, to avoid hypoglycemia, blood sugar levels should not be over-managed * Grace Johnston, Lynn Lethbridge, Pam Talbot, et al. Importance of identifying persons with diabetes who could benefit from palliative care. Canadian Journal of Diabetes in press

15 Conclusion Collaboration across disease programs is advised to enable comprehensive advance care planning for persons with breast cancer who are approaching the end of their life as a result of either cancer or non-cancer diseases, especially for nursing homes residents.

16 Questions?