Understanding and Addressing the Cancer Screening Participation Gap in Ontario

145 Pages·2017·2.18 MB·English

by  Cancer Care Ontario

Prevention and Cancer Control, Cancer Care Ontario
Understanding and
Addressing the
Cancer Screening
Participation Gap in
Ontario
A Summary of Cancer Care Ontario’s Initiatives
Cancer Care Ontario
March 2017
Acknowledgements
The following people are acknowledged for their contributions to the development of this report:
Listed alphabetically by last name.
Chamila Adhihetty, MPH Aisha Lofters, MD, CCFP, PhD
Joan Antal, BA Washington Loyola
Usman Aslam, MPH Loretta Luk, MBA, PMP
Nancy Baxter, MD, PhD, FRCSC, FACS Anna Matecki, BA
Gillian Bromfield, MSc Bronwen McCurdy, MPH
Elisa Candido, MPH Caitlin McGarry, MSc
Anna M. Chiarelli, MHSc, PhD Anthony B. Miller, MD, FRCP, FRCP (C), FFPH,
FACE
Alyssa Cloth, BA, PMP
Victoria Nadalin, MA
Nicki Cunningham, MSc(PT)
Lawrence Paszat, MD, MSc, FRCPC
Catherine Dubé, MD, MSc, FRCPC
Kathryn Perry, BA
Laura Faye, PhD
Linda Rabeneck, MD, MPH, FRCPC
Dionne Gesink, PhD
Priyanka Raj, MPH
Joanne Hader, MA
Laura Senese, BSc, MA
Eli Kane, BSc, MES
Suzanne Strasberg, MD, CCFP
Alethea Kewayosh
Simon Tavasoli, MSc
Rachel Kupets, MD, MSc, FRSCS
Jill Tinmouth, MD, PhD, FRCPC
Jenny Lass, MA
Emily Tsoa, MSW
Alex Lee, MPH
Meghan Walker, PhD
Andrea Lischka, MSc
Alexandra Whibley, BSc
Participation Gap Summit Expert Panel
 Heather Bryant, MD, PhD, CCFP, FRCPC, Vice President, Cancer Control, Canadian Partnership Against
Cancer
 Anna M. Chiarelli, MHSc, PhD, Provincial Scientific Lead, Ontario Breast Screening Program, Senior
Scientist, Prevention & Cancer Control, Cancer Care Ontario, Professor, Dalla Lana School of Public
Health, University of Toronto
 Rachel Kupets, MD, MSc, FRSCS, Provincial Scientific Lead, Ontario Cervical Screening Program, Cancer
Care Ontario
 Aisha Lofters, MD, PhD, CCFP, Scientist, Li Ka Shing Knowledge Institute, St. Michael’s Hospital
 Anthony B. Miller, MD, FRCP, FRCP (C), FFPH, FACE, Professor Emeritus, Dalla Lana School of Public
Health, University of Toronto
 Jessica Moffatt, PhD, Group Manager, Evidence and Program Integration, Cancer Care Ontario
 Lawrence Paszat, MD, MSc, FRCPC, Scientist, Sunnybrook Health Sciences Centre
 Jill Tinmouth, MD, PhD, FRCPC, Provincial Scientific Lead, ColonCancerCheck, Cancer Care Ontario;
Scientist, Sunnybrook Research Institute; Assistant Professor, Department of Medicine & Institute of Health
Policy Management and Evaluation, University of Toronto
Author
Shamara Baidoobonso, PhD, Team Lead, Cancer Care Ontario
Table of Contents
Executive Summary ..................................................................................................................................................... 1
Background .................................................................................................................................................................. 4
Context ..................................................................................................................................................................... 4
Document Description .............................................................................................................................................. 5
Objectives ................................................................................................................................................................. 6
Alignment with Existing Plans .................................................................................................................................. 6
Ontario Cancer Plan IV ........................................................................................................................................ 6
CCO Corporate Strategy ...................................................................................................................................... 6
Aboriginal Cancer Strategy III .............................................................................................................................. 7
2016–2019 Annual Business Plan ....................................................................................................................... 7
Accountability Agreements ................................................................................................................................... 8
Methods ........................................................................................................................................................................ 8
Inventory ................................................................................................................................................................... 8
Summaries ............................................................................................................................................................... 9
Synthesis .................................................................................................................................................................. 9
Overview of Initiatives .................................................................................................................................................. 9
Timeline .................................................................................................................................................................... 9
Summary of Interventions .......................................................................................................................................... 12
Key Interventions .................................................................................................................................................... 14
Under-/Never-Screened Pilots ........................................................................................................................... 14
Mobile Coaches (ID: 16) ..................................................................................................................................... 16
Correspondence Program (ID: 3) ....................................................................................................................... 17
Screening Activity Report (ID: 35) ...................................................................................................................... 17
Characteristics ........................................................................................................................................................ 17
Settings ............................................................................................................................................................... 17
Status ................................................................................................................................................................. 18
Target Population ............................................................................................................................................... 18
Initiative Type ..................................................................................................................................................... 18
Reach ................................................................................................................................................................. 18
Sample Size ....................................................................................................................................................... 19
Screening Program of Relevance ...................................................................................................................... 19
Focus .................................................................................................................................................................. 19
Activities ................................................................................................................................................................. 24
Operational ......................................................................................................................................................... 24
Pilot Projects ....................................................................................................................................................... 25
Targeted Awareness Campaigns ....................................................................................................................... 26
Research Methods and Results ............................................................................................................................. 26
Cancer Screening Participation .......................................................................................................................... 27
Enablers of Cancer Screening Participation ...................................................................................................... 27
Characteristics of the Under-/Never-Screened Populations .............................................................................. 27
Evaluation Methods and Findings .......................................................................................................................... 31
Quantitative ........................................................................................................................................................ 31
Qualitative ........................................................................................................................................................... 37
Not Evaluated ..................................................................................................................................................... 37
Summary of Supportive Initiatives .............................................................................................................................. 39
Characteristics ........................................................................................................................................................ 40
Settings ............................................................................................................................................................... 40
Status ................................................................................................................................................................. 40
Target Population ............................................................................................................................................... 40
Initiative Type ..................................................................................................................................................... 40
Reach ................................................................................................................................................................. 40
Sample Size ....................................................................................................................................................... 40
Screening Program of Relevance ...................................................................................................................... 40
Focus .................................................................................................................................................................. 40
Activities ................................................................................................................................................................. 42
Plans ................................................................................................................................................................... 42
Analytics ............................................................................................................................................................. 42
Research and Analysis Methods and Findings ...................................................................................................... 43
Literature Review................................................................................................................................................ 43
Systematic Reviews ........................................................................................................................................... 43
Quantitative ........................................................................................................................................................ 45
Qualitative ........................................................................................................................................................... 48
Evaluation ............................................................................................................................................................... 48
Conclusions ................................................................................................................................................................ 48
Who are the Under-/Never-Screened? .................................................................................................................. 48
Barriers ................................................................................................................................................................... 48
Qualitative Evidence ........................................................................................................................................... 48
Quantitative Evidence ........................................................................................................................................ 49
Enablers ................................................................................................................................................................. 49
Qualitative Evidence ........................................................................................................................................... 49
Quantitative Evidence ........................................................................................................................................ 49
Effective Interventions ............................................................................................................................................ 49
Gaps Identified ....................................................................................................................................................... 50
General Conclusions and Recommendations ........................................................................................................ 50
Appendix A: Summaries for Each of the Initiatives Included in the Synthesis ........................................................... 52

List of Tables
Table 1. Brief description of each intervention ........................................................................................................... 12
Table 2. Interventions in the under-/never-screened pilot projects that clearly targeted First Nations, Inuit and Métis
peoples ....................................................................................................................................................................... 15
Table 3. Characteristics of included interventions ..................................................................................................... 20
Table 4. Summary of development and implementation activities for operational interventions ............................... 24
Table 5. Summary of development and implementation activities for pilot interventions .......................................... 25
Table 6. Summary of research methods and results for interventional initiatives ...................................................... 28
Table 7. Summary of quantitative evaluation methods and findings for interventional initiatives .............................. 33
Table 8. Summary of qualitative evaluation methods and findings for interventional initiatives ................................ 38
Table 9. Brief description of each supportive initiative ............................................................................................... 39
Table 10. Characteristics of included supportive initiatives ....................................................................................... 41
Table 11. Summary of implementation activities for plans ......................................................................................... 42
Table 12. Summary of implementation activities and methods used for analyses .................................................... 42
Table 13. Summary of systematic review methods and findings ............................................................................... 44
Table 14. Summary of quantitative research and analysis methods and findings for supportive initiatives .............. 46

List of Figures
Figure 1. Breast cancer screening (mammogram) participation: age-adjusted percentage of Ontario women, ages
50–74, who completed at least one mammogram within a 30-month period, 2007–2014 .......................................... 5
Figure 2. Age-adjusted percentage of Ontarians, ages 50–74, who were overdue for colorectal cancer screening in
a calendar year, 2008–2014......................................................................................................................................... 5
Figure 3. CCO's performance improvement cycle ....................................................................................................... 8
Figure 4. Timeline milestones for initiatives to understand or close the cancer screening participation gap, 2008–
2016 ............................................................................................................................................................................ 11
Figure 5. Timeline for centralized correspondence .................................................................................................... 17
Executive Summary
Background
Cancer Care Ontario has identified participation as a key indicator of the performance of its organized screening
programs. In plans and agreements with the Ministry of Health and Long-Term Care and the Regional Cancer
Programs, Cancer Care Ontario identifies increasing screening participation as an important goal for the Cancer
Screening program. Since participation levels for all three organized cancer screening programs have either
stabilized or decreased, efforts are underway to develop a strategy to improve screening participation and reduce
disparities in screening participation. In support of strategy development, this synthesis summarizes work Cancer
Care Ontario has undertaken to date to understand and/or increase cancer screening participation.
Methods
Seventeen informational interviews were conducted with each team within Cancer Care Ontario’s Cancer
Screening program, the Research Office, the Communications unit, the Population Health team and the Aboriginal
Cancer Control Unit to identify work related to understanding or addressing the participation gap in cancer
screening, health equity and under-/never-screened populations. Initiatives identified during the interviews were
used to create an inventory. One- to five-page summaries were prepared for each initiative in the inventory, and the
content from those summaries was synthesized using a narrative summary approach.
Initiatives
Thirty-five initiatives were identified. These initiatives were a mix of interventions and supportive initiatives. The
earliest initiatives started in April 2008 and some are planned for the future.
Interventions
In all, 26 interventions and initiatives that included intervention components were identified. There were eight major
interventions with dedicated funding—the five under-/never-screened pilots (in the Champlain, Erie St. Clair, North
East, North West and Toronto Central regions), the mobile coaches, the centralized correspondence program and
the Screening Activity Report (SAR). The other 18 interventional initiatives included:
 screening resources for First Nation, Inuit and Métis communities;
 the Sioux Lookout Zone SAR;
 the Wequedong Lodge Cancer Screening Program;
 the expanded scope of primary care services provided by Health Canada nurses;
 travel coverage for First Nation women on-reserve who are receiving mammograms;
 the distribution of guaiac fecal occult blood test (gFOBT) kits to unattached people participating in
ColonCancerCheck (CCC);
 interpretation services for people who do not speak English;
 teletypewriter services;
 a multilingual Ontario Breast Screening Program fact sheet;
 digital mammography units for remote communities (planned for the future);
 the Sandy Lake SAR;
 cancer screening resources for newcomers and immigrants;
 one-time phone calls to remind women to screen for cervical cancer;
 targeted awareness campaigns implemented on Facebook;
 the transition from gFOBT to another colorectal cancer screening test (fecal immunochemical test);
 a research project about cancer screening among First Nation and Métis people;
 a research project that focused on identifying under-/never-screened populations and piloting interventions
for them; and
 a research project that assessed the effectiveness of mailing gFOBT kits to people who did not respond to
CCC invitation letters.
1
Supportive Initiatives
Nine supportive initiatives were also identified. These were:
 an evidence review identifying effective interventions for increasing cancer screening participation;
 an evidence review that identified interventions for reaching hard-to-reach populations, which greatly
overlap with under-/never-screened populations;
 a profile of cancer risk factors in Aboriginal communities;
 the development of regional work plans to address cancer (including cancer screening) in First Nation,
Inuit, and Métis communities;
 a plan to understand the under-/never-screened populations;
 a profile of under-/never-screened Ontarians and accompanying methods to identify the under-/never-
screened and where they live using Geographic Information Systems, population segmentation and
epidemiological methods;
 an online interactive tool to disseminate statistics about cancer risk factors and the social determinants of
health;
 a research project focused on understanding participation in colorectal cancer screening; and
 a research project about participation in breast cancer screening.
Overview of Findings
The evidence collected through Cancer Care Ontario’s initiatives show that the under-/never-screened population is
quite diverse and is distributed in all types of communities. These populations include some First Nation, Inuit and
Métis people, immigrants (especially newcomers), survivors of sexual abuse, men, people with low incomes and
people at the extremes of age eligibility for each organized cancer screening program.
The barriers and enablers of cancer screening participation are also quite diverse. Some of the barriers identified
included lack of physician promotion of cancer screening, being afraid of a cancer diagnosis, and lack of
transportation to screening services. Some factors that enable screening participation were being rostered to a
patient enrolment model physician, being aware of cancer, reminder telephone calls and cancer screening
correspondence (i.e., invitation, recall, result and reminder letters).
Importantly, several effective interventions for increasing cancer screening participation emerged from this
evidence. Self-sampling kits increased colorectal and cervical cancer screening participation. Correspondence and
tools that identify people who are overdue for screening increased screening participation for all three cancers.
Education sessions about cancer screening and prevention increased cancer screening knowledge, an important
precursor to screening participation. One-on-one education was also effective at increasing screening participation.
General Conclusions and Recommendations
 Cancer Care Ontario should continue to employ various approaches to improve cancer screening
participation and reduce disparities, but should discontinue approaches that are not supported by evidence
of effectiveness.
 Routine rigorous evaluations should be conducted for all initiatives aimed at addressing or understanding
low screening participation.
 To enhance their usefulness, evaluations must be rigorous while remaining highly feasible, and qualitative
methods should be employed more widely to help define aspects of problems and potential solutions but
should not be the main methods used for evaluation. Evaluations must also be based on a framework that
is appropriate for organized cancer screening programs.
 Evaluations should report on the magnitude of changes in screening participation; effective components of
complex interventions; the statistical significance of all outcomes, as well as barriers and enablers of
cancer screening participation; and final outcome measures (not just intermediate ones, such as
knowledge and awareness).
 Geographic data should be leveraged to identify regions where the under-/never-screened live and to
determine the composition of the under-/never-screened population in each region. Prior to use, however,
the accuracy of geographic data must be assessed, and the data sources must be validated and improved
whenever limitations are identified
2
 Adequate attention should be dedicated to the diverse groups that comprise the under-/never-screened
population, so that knowledge can be gained about these groups and the interventions that work for them.
Tailored approaches should also be used to increase screening participation among under-/never-screened
populations.
 It is important to engage primary care providers in efforts to reach the under-/never-screened population
and in developing more interventions that target the under-/never-screened. It is important to encourage
primary care providers to promote screening to their patients and to support primary care providers in
providing screening services.
3
Background
Context
Cancer screening participation is the proportion of eligible people in a target population who get screened within the
interval recommended in an organized screening program’s policy. Evidence shows that high participation is
important for the effectiveness and efficiency of organized cancer screening programs because it is associated with
decreases in mortality and incidence of some screened cancers.1 Participation also reflects the target population’s
acceptance of the screening program,2 which is why the International Agency for Research on Cancer has
identified screening participation as an important performance indicator for organized cancer screening programs.1
Ontario has adopted screening participation as a key indicator for cancers covered in two of the organized cancer
screening programs—the Ontario Breast Screening Program and the Ontario Cervical Screening Program. For
ColonCancerCheck, Ontario reports on the percentage of the target population that is overdue for colorectal cancer
screening.
The most recent data show that all three of Ontario’s organized cancer screening programs have not yet met
participation targets—70 percent for breast screening (national target)3 and 85 percent for cervical screening
(Ontario Cancer Plan target).4 Ontario does not currently have targets for colorectal cancer screening participation
or for the percentage of people overdue for colorectal cancer screening.
In 2013–2014, approximately 1.3 million screen-eligible women in Ontario, ages 50 to 74, were screened for breast
cancer with at least one mammogram within a 30-month period. This represented a breast cancer screening
participation level of 65 percent, which has remained unchanged since 2011–2012. Of the women who underwent
screening, 51 percent were screened through the Ontario Breast Screening Program, which represents an increase
since 2007–2008 (Figure 1).
In 2012–2014, 63 percent of screen-eligible women had at least one Papanicolaou test (Pap test) within a 42-
month period, which was a decrease from 2009–2010, when participation for cervical cancer screening was 68
percent.
Approximately 1.6 million screen-eligible Ontarians (40 percent) ages 50 to 74 were overdue for colorectal cancer
screening in 2014. This proportion has decreased steadily since 2008 (this is the desired direction), when 50
percent of screen-eligible Ontarians were overdue for colorectal cancer screening (Figure 2). This measure
includes those people who did not complete a guaiac fecal occult blood test in the last two years, did not have a
colonoscopy in the last 10 years and did not have a flexible sigmoidoscopy in the last five years.5

1 International Agency for Research on Cancer. IARC Handbooks of Cancer Prevention, Vol. 10: Cervix Cancer
Screening. Lyon, France; 2009. Available from: https://www.iarc.fr/en/publications/pdfs-
online/prev/handbook10/handbook10-chap5.pdf.
2 Mema SC, Yang H, Vaska M, Elnitsky S, Jiang Z. Integrated Cancer Screening Performance Indicators: A
Systematic Review. PLoS ONE. 2016;11(8): e0161187. Available from:
http://journals.plos.org/plosone/article?id=10.1371%2Fjournal.pone.0161187
3 See Figure 1 under “View Graphs and Analysis” here:
http://www.csqi.on.ca/cms/One.aspx?portalId=351209&pageId=354635
4 See Figure 1 under “View Graphs and Analysis” here:
http://www.csqi.on.ca/cms/One.aspx?portalId=351209&pageId=354642
5 Cancer Care Ontario. Ontario Cancer Screening Performance Report 2016. Toronto: Cancer Care Ontario; 2016.
4