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Survivorship Care

Key findings

Measure:  Percentage of breast cancer patients receiving guideline- recommended mammogram tests in first, second and third follow-up year

 

Desired Direction:

 

An image of an arrow pointing upwards. This indicates that desired direction for this action is upwards.

 

As of this Report:

 

An image of a yellow box. This indicates that there is no time trend and this action is below but approaching target or has notable regional variation.

Seventy-four percent (74%) of breast cancer patients had a guideline-recommended mammogram in the first follow-up year, and 74% of colorectal cancer patients diagnosed in 2014 had a surveillance colonoscopy within 18 months of surgery.

Based on questionnaire responses from a patient survey for fiscal year 2016/2017, 70% of patients felt very informed of the plan for their post-treatment care.

What is survivorship?

  • As many cancer treatments improve and survival rates increase, the number of people living beyond their cancer treatment will continue to grow. See Cancer in Ontario for more information.
  • Following treatment, some patients experience late and long-term effects of treatment, cancer recurrence or new cancers. These events need to be addressed and appropriate care provided for all cancer survivors.
  • Care guidelines help to apply best scientific evidence in the practice and decisions for treating different types of cancer. They also provide guidance for care during the survivorship phase for patients who have completed their cancer treatment.
  • The transition from active treatment to post-treatment care is important, because if care is not planned and coordinated, cancer survivors may be left without knowledge of their heightened risks or a follow-up plan of care [1].

Measure:  Percentage of colorectal cancer patients receiving guideline- recommended surveillance colonoscopy in first follow-up year

 

Desired Direction:

 

An image of an arrow pointing upwards. This indicates that desired direction for this action is upwards.

 

As of this Report:

 

An image of an arrow pointing straight in a yellow box. This indicates that there has been no increase or decrease in performance over the previous periods identified and this action is below but approaching target or has notable regional variation.

  • To measure whether patients know their next steps of care, this analysis uses the Ambulatory Oncology Patient Satisfaction Survey (AOPSS) question of how informed a patient is about their plan of post-treatment care. Response options are “very informed,” “somewhat informed” and “not at all informed.”
  • This analysis specifically looks at patients who have indicated they have completed their treatment.

What is breast cancer follow-up care?

  • Despite the evidence for optimal follow-up care for patients with breast cancer, significant variation still exists in the way follow-up care is provided in Ontario. For example, one-half of breast cancer survivors have more surveillance imaging studies for metastatic disease than recommended and one-quarter have fewer [2].
  • Cancer Care Ontario has endorsed the consensus document developed by Health Canada’s Steering Committee on Clinical Practice Guidelines for the Care and Treatment of Breast Cancer [3].
  • Breast cancer survivors thought to be at high risk for recurrence should be referred to Cancer Care Ontario’s Ontario Breast Screening Program (OBSP) High Risk Screening Program to be assessed for potential participation [4].
  • For more information on survivorship for breast cancer patients, see the Breast cancer well follow-up pathway map.

What is colorectal cancer follow-up care?

Measure:  Percentage of patients who are informed of their plan of care

 

Desired Direction:

 

An image of an arrow pointing upwards. This indicates that desired direction for this action is upwards.

 

As of this Report:

 

An image of an arrow pointing upwards in a grey box. This indicates that there has been an increase in performance over the previous periods identified and this action does not have identified targets.

  • An abdominal Computerized Tomography (CT scan) is recommended annually for 3 years.
  • A surveillance colonoscopy should be performed approximately 1 year after initial surgery and again 3 to 5 years after that.
  • The guideline provides follow-up care recommendations for adult colorectal cancer survivors who have completed primary treatment for Stage II or III disease. Whether the recommendations are applicable for Stage I survivors is left to the discretion of individual healthcare providers.
  • For more information on survivorship for colorectal cancer patients, see the “Colorectal cancer follow-up pathway map.”

Survivorship = waiting for cancer to return. Survivorship means fighting to live to see your daughter graduate from secondary school. And continuing to fight to see your daughter's under-graduate achievement from University.

Anne N., Patient/Family Advisor

Figure 1. Percentage of breast cancer patients diagnosed in 2012 who had mammogram tests in the first, second and third follow-up years, by Regional Cancer Centre (RCC) of referral or consult

More information regarding the methodology is available.

Report date: January 2018

Data source: OCR, ALR, DAD, NACRS, OHIP

Prepared by: Analytics and Informatics, Cancer Care Ontario

Note:

  1. First follow-up year = 13 to 24 months from diagnosis; second follow-up year = 25 to 36 months from diagnosis; and third follow-up year = 37 to 48 months from diagnosis.
  2. See technical notes for inclusions/exclusions.

Figure 2. Percentage of colorectal patients diagnosed in 2012 to 2014 with at least 1 colonoscopy within 18 months of initial surgery, by Regional Cancer Centre (RCC) of referral or consult

More information regarding the methodology is available.

Report date: January 2018

Data source: OCR, ALR, DAD, NACRS, OHIP

Prepared by: Analytics and Informatics, Cancer Care Ontario

Note:

  1. See technical notes for detailed methodology and inclusions/exclusions

Figure 3. Cancer patient questionnaire responses concerning how informed they were about their plan for post-treatment care, fiscal year 2013/2014 to fiscal year 2016/2017

More information regarding the methodology is available.

Report date: December 2017

Data source: Ambulatory Oncology Patient Satisfaction Survey (AOPSS)

Prepared by: Analytics and Informatics, Cancer Care Ontario

Note:

  1. Values are based on data cut from the AOPSS taken on December 19, 2017
  2. Analysis only includes patients who reported that their treatment was complete.
  3. Please refer to technical documentation for more details on methodology and inclusion/exclusion criteria.

Figure 4. Cancer patient questionnaire responses concerning how informed they were about their plan for post-treatment, by type of cancer, fiscal year 2016/2017

More information regarding the methodology is available.

Report date: December 2017

Data source: Ambulatory Oncology Patient Satisfaction Survey (AOPSS)

Prepared by: Analytics and Informatics, Cancer Care Ontario

Note:

  1. Values are based on data cut from the AOPSS taken December 19, 2017.
  2. Analysis only includes patients who reported that their treatment was complete.
  3. Records where the disease site information was missing were excluded from analysis.
  4. †Values suppressed due to small cell counts and for the total for privacy risks for the "all sites" category.
  5. Please refer to technical documentation for more details on methodology and inclusion and exclusion criteria.

Data Table 1. Percentage of breast cancer patients diagnosed in 2012 who had mammogram tests in the first, second and third follow-up years, by Regional Cancer Centre (RCC) of referral or consult

RCC Percentage of patients with mammogram first follow-up year Number of patients with mammogram first follow-up year Number of valid breast cancer patients first follow-up year With mammogram first follow-up yearlower confidence interval With mammogram first follow-up year upper confidence interval Percentage of patients with mammogram second follow-up year Number of patients with mammogram second follow-up year Number of valid breast cancer patients second follow-up year With mammogram second follow-up year lower confidence interval With mammogram second follow-up year upper confidence interval Percentage of patients with mammogram third follow-up year Number of patients with mammogram third follow-up year Number of valid breast cancer patients third follow-up year With mammogram third follow-up year lower confidence interval With mammogram third follow-up year upper confidence interval
All reporting Regional Cancer Centres 74.4 4,326 5,811 73.3 75.6 74.7 3,099 4,147 73.4 76.1 70.4 2,342 3,325 68.9 72.0
Windsor RCC 69.1 161 233 63.0 75.2 67.9 110 162 60.4 75.4 67.4 97 144 59.4 75.4
London RCP 74.2 346 466 70.2 78.3 73.6 243 330 68.7 78.5 72.0 211 293 66.7 77.3
Grand River RCC (Kitchener) 77.5 297 383 73.2 81.9 67.7 189 279 62.1 73.4 70.3 156 222 64.0 76.5
Juravinski (Hamilton) 70.0 305 436 65.5 74.4 72.1 181 251 66.4 77.9 69.5 148 213 63.1 75.9
Carlo Fidani (Peel) 79.4 498 627 76.2 82.7 75.8 351 463 71.8 79.8 76.5 289 378 72.0 80.9
UHN/PMH (Toronto) 72.8 627 861 69.8 75.9 73.2 423 578 69.5 76.9 67.1 281 419 62.4 71.7
Odette (Toronto Sunnybrook) 76.9 637 828 74.0 79.9 79.3 464 585 75.9 82.7 75.0 366 488 71.1 78.9
Stronach RCC (Newmarket) 79.7 189 237 74.4 85.1 77.2 132 171 70.6 83.8 76.2 109 143 68.9 83.6
MDRCC (Oshawa) 74.7 198 265 69.3 80.1 75.1 139 185 68.6 81.6 72.3 115 159 65.1 79.6
Southeastern RCC (Kingston) 80.8 215 266 75.9 85.7 80.3 151 188 74.4 86.3 61.5 88 143 53.2 69.9
Ottawa RCC 72.2 512 709 68.8 75.6 76.7 440 574 73.1 80.2 67.7 274 405 63.0 72.3
Simcoe-Muskoka RCC 68.9 122 177 61.8 76.0 75.0 99 132 67.2 82.8 63.4 78 123 54.5 72.3
North East (Sudbury) 69.5 146 210 63.1 76.0 71.8 107 149 64.3 79.4 63.2 72 114 53.9 72.5
Northwestern (Thunder Bay) 64.6 73 113 55.3 73.9 70.0 70 100 60.5 79.5 71.6 58 81 61.2 82.0

Report date: January 2018

Data source: OCR, ALR, DAD, NACRS, OHIP

Prepared by: Analytics and Informatics, Cancer Care Ontario

Note:

  1. First follow-up year = 13 to 24 months from diagnosis; second follow-up year = 25 to 36 months from diagnosis; and third follow-up year = 37 to 48 months from diagnosis.
  2. See technical notes for inclusions/exclusions.

Data Table 2. Percentage of colorectal patients diagnosed in 2012 to 2014 with at least 1 colonoscopy within 18 months of initial surgery, by Regional Cancer Centre (RCC) of referral or consult

RCC Percentage of patients with colonoscopy diagnosis year 2012 Number of patients with colonoscopy diagnosis year 2012 Number of valid colorectal cancer patients diagnosis year 2012 With colonoscopy diagnosis year 2012 lower confidence interval With colonoscopy diagnosis year 2012 upper confidence interval Percentage of patients with colonoscopy diagnosis year 2013 Number of patients with colonoscopy diagnosis year 2013 Number of valid colorectal cancer patients diagnosis year 2013 With colonoscopy diagnosis year 2013 lower confidence interval With colonoscopy diagnosis year 2013 upper confidence interval Percentage of patients with colonoscopy diagnosis year 2014 Number of patients with colonoscopy diagnosis year 2014 Number of valid colorectal cancer patients diagnosis year 2014 With colonoscopy diagnosis year 2014 lower confidence interval With colonoscopy diagnosis year 2014 upper confidence interval
All reporting Regional Cancer Centres 75.0 1,104 1,472 72.8 77.2 76.2 1,128 1,480 74.0 78.4 73.9 1,168 1,581 71.7 76.1
Windsor RCC 80.0 24 30 64.0 96.0 71.4 40 56 58.7 84.2 74.2 89 120 65.9 82.4
London RCP 69.5 121 174 62.4 76.7 70.2 127 181 63.2 77.1 71.2 126 177 64.2 78.1
Grand River RCC (Kitchener) 80.4 90 112 72.6 88.2 74.2 69 93 64.8 83.6 71.2 89 125 62.9 79.5
Juravinski (Hamilton) 82.1 124 151 75.7 88.6 81.3 100 123 74.0 88.6 78.1 121 155 71.2 84.9
Carlo Fidani (Peel) 73.7 129 175 66.9 80.5 83.1 172 207 77.7 88.4 75.7 134 177 69.1 82.3
UHN/PMH (Toronto) 72.1 49 68 60.7 83.5 75.4 52 69 64.5 86.3 71.2 47 66 59.5 82.9
Odette (Toronto Sunnybrook) 69.1 47 68 57.4 80.8 71.4 80 112 62.6 80.2 67.9 72 106 58.6 77.3
Stronach RCC (Newmarket) 69.2 54 78 58.3 80.1 83.1 54 65 73.2 93.0 67.2 45 67 55.2 79.2
MDRCC (Oshawa) 81.9 77 94 73.6 90.2 79.8 71 89 70.9 88.7 75.6 65 86 65.9 85.2
Southeastern RCC (Kingston) 68.5 63 92 58.4 78.5 74.0 54 73 63.2 84.7 72.4 63 87 62.4 82.4
Ottawa RCC 72.2 166 230 66.2 78.2 74.5 137 184 67.9 81.0 76.9 163 212 71.0 82.8
Simcoe-Muskoka RCC 87.9 58 66 79.2 96.5 74.2 46 62 62.5 85.9 78.1 57 73 67.9 88.3
North East (Sudbury) 78.9 60 76 69.1 88.8 78.9 75 95 70.2 87.7 75.9 60 79 65.9 86.0
Northwestern (Thunder Bay) 72.4 42 58 60.0 84.8 71.8 51 71 60.7 83.0 72.5 37 51 59.3 85.8

Report date: January 2018

Data source: OCR, ALR, DAD, NACRS, OHIP

Prepared by: Analytics and Informatics, Cancer Care Ontario

Note:

  1. See technical notes for detailed methodology and inclusions/exclusions

Data Table 3. Cancer patient questionnaire responses concerning how informed they were about their plan for post-treatment care, fiscal year 2013/2014 to fiscal year 2016/2017

Fiscal year Percentage of respondents reporting that they were "very informed" (%) Number of Respondents reporting that they were "very informed" Total number of AOPSS responses received "Very informed" lower confidence interval "Very informed" upper confidence interval Percentage of respondents reporting that they were "somewhat informed" (%) Number of respondents reporting that they were "somewhat informed" Total number of AOPSS responses received "Somewhat informed" lower confidence interval "Somewhat informed" upper confidence interval Percentage of respondents reporting that they were "not at all informed" (%) Number of respondents reporting that they were "not at all informed" Total number of AOPSS responses received "Not at all informed" lower confidence interval "Not at all informed" upper confidence interval
All fiscal years 66.9 8,959 13,401 66.1 67.7 28.8 3,855 13,401 28.0 29.5 4.4 587 13,401 4.0 4.7
2013/2014 65.0 1,813 2,788 63.2 66.8 30.5 849 2,788 28.7 32.2 4.5 126 2,788 3.7 5.3
2014/2015 66.0 2,511 3,807 64.4 67.5 29.1 1,109 3,807 27.7 30.6 4.9 187 3,807 4.2 5.6
2015/2016 66.6 2,477 3,718 65.1 68.2 29.2 1,085 3,718 27.7 30.7 4.2 156 3,718 3.5 4.9
2016/2017 69.9 2,158 3,088 68.2 71.5 26.3 812 3,088 24.7 27.9 3.8 118 3,088 3.1 4.5

Report date: December 2017

Data source: Ambulatory Oncology Patient Satisfaction Survey (AOPSS)

Prepared by: Analytics and Informatics, Cancer Care Ontario

Note:

  1. Values are based on data cut from the AOPSS taken on December 19, 2017
  2. Analysis only includes patients who reported that their treatment was complete.
  3. Please refer to technical documentation for more details on methodology and inclusion/exclusion criteria.

Data Table 4. Cancer patient questionnaire responses concerning how informed they were about their plan for post-treatment, by type of cancer, fiscal year 2016/2017

Type of cancer Percentage of respondents reporting that they were "very informed" (%) Number of respondents reporting that they were "very informed" Total number of AOPSS responses received "Very informed" lower confidence interval "Very informed" upper confidence interval Percentage of respondents reporting that they were "somewhat informed" (%) Number of respondents reporting that they were "somewhat informed" Total number of AOPSS responses received "Somewhat informed" lower confidence interval "Somewhat informed" upper confidence interval Percentage of respondents reporting that they were "not at all informed" (%) Number of respondents reporting that they were "not at all informed" Total number of AOPSS responses received "Not at all informed" lower confidence interval "Not at all informed" upper confidence interval
All sites 69.9 2,158 3,088 68.2 71.5 26.3 812 3,088 24.7 27.9 3.8 118 3,088 3.1 4.5
Brain 55.0 22 40 38.3 71.7 45.0 18 40 28.3 61.7 0.0 0 40 0.0 0.0
Breast 69.8 586 840 66.6 72.9 26.4 222 840 23.4 29.5 3.8 32 840 2.5 5.2
Cervix/uterine/ovarian 69.8 111 159 62.4 77.3 24.5 39 159 17.5 31.5 5.7 9 159 1.8 9.6
Colorectal/bowel 66.5 137 206 59.8 73.2 29.1 60 206 22.7 35.6 4.4 9 206 1.3 7.4
Head and neck 71.1 62.3 79.8 25.4 17.0 33.9 3.5 0.0 7.3
Haematology (blood) 68.3 58.8 77.7 26.9 17.9 35.9 4.8 0.2 9.4
Kidney/bladder 59.6 46.0 73.3 38.6 25.1 52.1 1.8 0.0 6.0
Lung 68.7 215 313 63.4 74.0 25.2 79 313 20.3 30.2 6.1 19 313 3.3 8.9
Lymphoma 71.1 175 246 65.3 77.0 24.8 61 246 19.2 30.4 4.1 10 246 1.4 6.7
Melanoma 72.4 63.4 81.4 25.7 16.9 34.6 1.9 0.0 5.0
Prostate/testicular 76.2 308 404 72.0 80.5 21.8 88 404 17.6 25.9 2.0 8 404 0.5 3.5
Sarcoma 60.0 36.0 84.0 30.0 7.4 52.6 10.0 0.0 25.6
Stomach 77.1 61.8 92.5 20.0 5.3 34.7 2.9 0.0 9.8
Other 68.5 62.6 74.5 30.3 24.4 36.2 1.2 0.0 2.7
Do not know 67.5 131 194 60.7 74.4 25.8 50 194 19.4 32.2 6.7 13 194 2.9 10.5

Report date: December 2017

Data source: Ambulatory Oncology Patient Satisfaction Survey (AOPSS)

Prepared by: Analytics and Informatics, Cancer Care Ontario

Note:

  1. Values are based on data cut from the AOPSS taken December 19, 2017.
  2. Analysis only includes patients who reported that their treatment was complete.
  3. Records where the disease site information was missing were excluded from analysis.
  4. †Values suppressed due to small cell counts and for the total for privacy risks for the "all sites" category.
  5. Please refer to technical documentation for more details on methodology and inclusion and exclusion criteria.

What do the results show?

Seventy-four percent (74%) of breast cancer patients received 1 or more mammograms in the first year of follow-up (Figure 1).

  • Seventy-four percent (74%) of breast cancer patients received 1 or more mammograms 13 to 24 months after their diagnosis. These rates are similar to the second (75%) and third year (70%) of follow-up, indicating that surveillance imaging appears to continue at a stable rate.
  • Some regional variation can be seen, but regions seem consistent in their follow-up practices in each follow-up year.

The majority of colorectal cancer patients received a surveillance colonoscopy within 18 months of surgery (Figure 2).

  • Of colorectal cancer patients diagnosed in 2014, 74% received a surveillance colonoscopy within 18 months of surgery.
  • Some regional variation is present, with a range of 67% to 78% for patients diagnosed in 2014.
  • Overall, there is a notable increasing trend for the London and Ottawa Regional Cancer Centres (RCCs) over the past 3 years. There is a decreasing trend for the Grand River, Juravinski and R.S. McLaughlin Durham RCCs over the same period.

Most patients feel informed about their plan for post-treatment care, with some variation between types of cancer (Figures 3 and 4).

  • According to patient questionnaire responses for fiscal year 2016/2017, 70% of patients are very informed about their care plan, while 4% are not at all informed about their care plan. These metrics have improved from fiscal year 2013/2014 (Figure 3).
  • Moreover, this 5% increase over the last few reported years can potentially be attributed to investments in pilot follow-up programs regionally and because follow-up care is now openly being discussed.
  • Some variation exists between types of cancer, with 55% of brain cancer patients very informed about their plan of care compared to 77% of stomach cancer patients (Figure 4).

Why is this important to patient care?

The right surveillance

  • Over the past 3 decades, there has been great progress in the early diagnosis and treatment of cancers. This, in turn, has led to better survival.
  • Surveillance strategies involve detecting disease recurrence as early as possible, but not all tests have the ability to do this [5]. Recommended tests also vary depending on the type of cancer.
  • It is important to monitor for recurrence using the appropriate surveillance to avoid needlessly putting people through tests with no overall impact.

Integration of primary care and specialists for follow-up improves patient care

  • Addressing patient anxiety is the key to a successful transfer from specialty to primary care, and simple strategies (such as discussing plans for follow-up with patients and designing a standardized transition plan) can ease the transition. Research points to the importance of setting expectations and planning for follow-up early in the care process [1].
  • Many breast cancer survivors in Canada have regular follow-up visits with oncologists for many years after treatment is complete [2]. Evidence, however, shows that a proportion of these patients do not require this level of specialist-led follow-up care [6, 7].
  • Other research suggests that primary care involvement in follow-up care improves the likelihood that patients will receive necessary care for other chronic medical conditions [8].
  • In 2012, Cancer Care Ontario provided one-time catalyst funding to all 14 RCCs for a Well Follow-up Care Program for breast and colorectal cancer patients. Preliminary results show that breast cancer patients in the Well Follow-up Care Program had less costly care and more appropriate use of mammograms compared to a control group [9].

Find out more

To find out more about Cancer Care Ontario’s Breast Cancer Pathway, please click here.

For more information on survivorship care, see the guideline Models of Care for Cancer Survivorship, developed by the PEBC at Cancer Care Ontario.

Notes

  1. Hewitt M, Greenfield S, Stovall E, editors. From cancer patient to cancer survivor: lost in transition. Washington, D.C.: The National Academies Press; 2005.
  2. Grunfeld E, Hodgson D, del Guidice M, Moineddin R. Population-based longitudinal study of follow-up care for breast cancer survivors. J Oncol Pract. 2010;6(4):174–181.
  3. Steering Committee on Clinical Practice Guidelines for the Care Treatment of Breast Cancer. Clinical practice guidelines for the care treatment of breast cancer. Follow-up for treatment for breast cancer. CMAJ. 1998;158:S65–S70.
  4. Ontario Breast Screening Program (OBSP): Women at High Risk for Breast Cancer [Internet]. Toronto: Cancer Care Ontario; 2011 Jun [cited 2017 Feb 14]. Available from: here.
  5. Earle C, Annis R, Sussman J, Haynes AE, Vafaei A. A quality initiative of the program in evidence-based care (PEBC): Cancer Care Ontario follow-up care, surveillance protocol, and secondary prevention measures for survivors of colorectal cancer 2012 [Internet]. Toronto: Cancer Care Ontario; 2012 [cited 2017 Feb 14]. Available from:
  6. Grunfeld E, Levine M, Coyle D, Szechtman B, Mirsky D, Verma S, et al. Randomized trial of long-term follow-up for early-stage breast cancer: a comparison of family physician versus specialist care. J Clin Oncol. 2006;24(6):848–855.
  7. Grunfeld E, Mant D, Yudkin P, Adewuyi-Dalton R, Cole D, Stewart J, et al. Routine follow-up of breast cancer in primary care: randomised trial. BMJ. 1996;313:665–669.
  8. Earle CC, Neville BA. Under use of necessary care among cancer survivors. Cancer. 2004;101:1712–1719.
  9. Mittmann N, Earle C, Liberty J, Beglaryan H, Liu N, Gilbert J, et al. Promoting health system sustainability with new models of care: an evaluation of the breast cancer well follow-up care model. ASCO Quality Care Symposium; 2017 March 2–4; Orlando.