• 2,500 women
    were determined to be at high risk for breast cancer by the High Risk Screening Program in Ontario in 2014
  • 84%
    of cancer patients saw a registered dietitian at a regional cancer centre within 14 days of referral in 2015
  • 72%
    of stage III colon cancer patients received chemotherapy within 60 days after surgery
  • 84%
    of all cancer surgery patients received their consult within the recommended wait time in 2015, and 88% received their surgery within the recommend wait time
  • 29%
    of patients with oropharynx cancer and 20% with cervical cancer visited the emergency department while undergoing a course of curative radiation therapy between 2012 and 2015
  • 44%
    of breast cancer patients, 48% of colon cancer patients and 62% of lymphoma patients visited the emergency department or were admitted to hospital at least once while receiving chemotherapy
  • About 25%
    of patients who undergo lung, prostate and colorectal surgery have an unplanned hospital visit following cancer surgery
  • 64%
    of cancer patients had a first consult with an outpatient palliative care team within 14 days of referral in 2015
  • 40%
    of cancer patients visited the emergency department in the last 2 weeks of life in 2012
  • 361,991
    unique patients were screened for symptom severity using ESAS in 2015, representing 60% of patients
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Person-Centred Care and Patient Experience with Outpatient Cancer Care

 
Measure Desired Direction As of this Report
Patient experience with outpatient care
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See Methodology and Approach to find out how the ratings are calculated.

Key findings

Cancer patients treated in outpatient settings continue to report a reasonably high degree of satisfaction with most aspects of their experience (including respect for patient preferences and physical comfort), but there remain gaps, regional inconsistencies and opportunities for improvement within certain domains (such as emotional support).

Cancer Care Ontario has engaged with patient and family members in order to have a cancer system that is person-centred. Through this engagement, there are almost 100 patient and family advisors representing diverse regions who vary by their type of cancer and age.

What is person-centred care, patient engagement and patient experience?

In my words


Person-centred care is a partnership. We also have to understand the nurses and the doctors on the other side. They have to understand what it’s like from our side. Then we work together in a partnership.

Joanne M.
Patient/Family Advisor
  • Person-centred care (PCC) is the evolution of patient-centred care. It recognizes that true high-quality care that has a direct impact on the patient experience requires a fundamental shift in our approach to healthcare.
  • PCC is “an approach to the planning, delivery and evaluation of healthcare that is grounded in mutually beneficial partnerships among healthcare providers, patients and families, which results in better health outcomes, a wiser allocation of resources and improved patient experience1.” The adoption of a model of PCC requires a different conceptualization of how patients, family members, caregivers and healthcare teams are engaged and work together.
  • PCC drives healthcare services that understand and deliver care that is responsive to the individual needs, preferences and goals of patients. This develops a more person-centred healthcare system where people are supported to successfully manage and make informed decisions about their own health and care. This, in turn, will drive improvements in the overall patient experience.
  • One approach used to establish a person-centred model of care is patient and family engagement, which has patients, family members, healthcare providers and professionals working together to plan, deliver and evaluate health services2.
  • Patient experience has been defined as “the sum of all interactions, shaped by an organization’s culture, which influence patient perceptions and expectations across a continuum of care3.”
  • In improving PCC, it is important to have insight into the cancer patient’s view of healthcare and their specific wishes, needs and preferences4. Increasingly, cancer patients want to play an active role in the care they receive4.

How are PCC, patient engagement and patient experience measured?

  • In Ontario, the Ambulatory Oncology Patient Satisfaction Survey (AOPSS) reports on dimensions of patient experience, in regards to the care received in outpatient cancer treatment settings.
  • Patient experience is assessed through AOPSS, a survey that asks patients to rate and assess their care across the following dimensions:
    • emotional support;
    • continuity and coordination of care;
    • respect for their preferences;
    • physical comfort;
    • quality of information, education and communication; and
    • how well they were able to access their care.
  • Each dimension has several questions related to patient care and their experience as outpatients.
  • The AOPSS allows patients who have been currently receiving treatment—or those who have received cancer treatment in the last 3 months—to provide anonymous, in-depth, open-ended and personalized descriptions of their overall treatment experiences.
  • More recently added to this report is the PCC indicator. Survey questions were selected to build a PCC composite indicator that is based on 3 dimensions of PCC: communication, self-management and support for shared decision-making5.
  • This year’s Index also highlights information on patient engagement using process measures of Cancer Care Ontario’s Patient and Family Advisors such as regional representation, type of cancer and age.
Patient and family advisors working with Cancer Care Ontario by Local Health Integration Network (LHIN)
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What do the results show?

Most patients are satisfied with their experience, but gaps remain (Figure 1).

  • As of February 2016, 4,550 individuals responded to the AOPSS survey for Fiscal Year (FY) 2015/2016, an overall response rate of 45.1%.
  • Results are shown for patients responding positively to the statements.
  • “Respect for patient preferences” (81%) and “physical comfort” (79%) were the highest scoring dimensions in FY2015/2016. Specific physical comfort questions are reported in the End-of-Life Measures section of the Cancer System Quality Index (CSQI).
  • Similar to previous years, emotional support continues to score the lowest (at 55%). Specific emotional support questions are reported in Experience with Patient Education Services section of the CSQI. In addition, work has been engaged to address emotional support through the introduction of symptom screening. These are reported in the Symptom Assessment and Management section of the CSQI.
  • Each of the 6 dimensions of care as reported by AOPSS remain constant over time from FY2013/2014 to FY2015/2016.
  • Regional Cancer Programs continue to implement quality improvement plans to specifically focus on these dimensions of care.

There is some regional variation for the PCC composite measure (Figure 2).

  • There is slight variation among composite patient experience scores between the regional cancer centres.
  • There is little change for the PCC composite within the province (67%) for FY2015/2016 in comparison to FY2014/2015 (68%).
  • Patients from the Sault Area Hospital (78%) were the most satisfied with the 3 components of care: communication, self-management and support for shared decision-making. This regional cancer centre has experienced the largest percent increase (7.6%) for this composite measure from the previous fiscal year (71%).
  • Patients from the Windsor Regional Cancer Centre (59%) were the least satisfied with the 3 components of care. This regional cancer centre has experienced the largest percent decrease (6.5%) for this composite measure from the previous fiscal year (65%).

Cancer Care Ontario patient and family engagement has diverse regional representation, and advisors vary by age and type of cancer (Figures 3, 4, 5 and 6).

  • Patient and family advisors are a dynamic group of individuals who have a range of experience with Ontario’s cancer system as patients, family members and caregivers.
  • Patient and family advisors partner with Cancer Care Ontario staff to provide direct input into policies, programs and practices that affect patient care and services.
  • Cancer Care Ontario has a Patient and Family Advisory Council (PFAC) made up of patient and family advisors who have made a 3-year commitment to be part of the Council, providing Cancer Care Ontario with partnership and advice relevant to (and based on) the patient, family member and caregiver experience.
  • The Patient and Family Advisory Council has 25 members, with representation from all 14 regions in Ontario.
  • In addition, Cancer Care Ontario’s patient and family advisor community is made up of individuals across the province who represent a diverse range of ages, backgrounds and experiences with the healthcare system.
  • Cancer Care Ontario has over 100 patient and family advisors across all 14 regions in Ontario.
  • Most patient and family advisors (83%) are aged 40 to 75.

Why is this important to Ontarians?

PCC leads to better care, outcomes and quality of life.

  • The provision of whole person care as reflected in the Cancer Care Ontario Person-Centred Care Guideline is essential. Whole person care includes not only cancer treatment and physical care, but also identification of the individual’s psychosocial health needs and the resources available to support individuals in managing the emotional, practical, social and spiritual elements of their experience.
  • Effective communication—including active listening, expressions of empathy and sensitivity to the experience of the person affected by cancer—has been shown to improve psychological adjustment, adherence to treatment plans and satisfaction with care6–8.
  • The patient experience has been associated with a variety of outcomes, including the following:
    • patient quality of life9-11;
    • survival12,13;
    • clinical effectiveness and safety14; and
    • specific outcomes (i.e. appointment adherence15, improvements in screening16 and a decrease in anxiety and depression11).
  • Increased patient experience also has been linked to lower healthcare-related costs17-19.

Understanding patient needs and experiences with their care helps providers and staff respond to gaps.

  • Looking at experience across several dimensions and types of cancer helps providers and cancer centres better direct their efforts and address gaps in patient need20.

What’s next for PCC in Ontario?

Enhancing patient experience measures to improve care

  • Patient Reported Experience Measures (PREMs) capture the patient’s perspective of his or her experience while receiving care.21 PREMs focus on specific aspects of the care process, rather than an overall evaluation of services.
  • Cancer Care Ontario developed a point-of-care PREM for adult oncology patients within the treatment phase, and with expansion across the care continuum. This systematically captures PREMs and drives quality improvement based on patients’ needs, wants and preferences.
  • Statistical analysis results were used to produce a final validated experience tool entitled Your Voice Matters: We are Listening that will systematically capture PREMs through an electronic system in Ontario in 2016.
  • Collection of point-of-care PREMS will ensure that local and system-level planning and quality improvement in the cancer system are rooted in what matters most to patients and their families. Your Voice Matters will empower and enable patients to share their experience immediately following their most recent visit.

Increasing people’s knowledge of PCC

  • Cancer Care Ontario, in partnership with the Program in Evidence-Based Care, endorsed the Person-Centred Care Guideline. The first of its kind in Canada, the Guideline outlines a level of service that every person accessing adult oncology services in Ontario should expect to receive. By describing person-centred principles in specific terms, it enables agencies, organizations and providers to embed PCC care in their practices.
  • To initiate this process, Cancer Care Ontario was tasked with translating PCC knowledge to others and demonstrating how the Guideline can be used to stimulate changes in behavior.
  • An educational video was created by Cancer Care Ontario to increase the understanding of person-centred care, patient experience and patient engagement among health professionals, who identify PCC as vital to their role. The video also described the need for the Person-Centred Care Guideline in Ontario. It was shared with the public via YouTube and with certain groups through a survey link. To date, the video has had over 3,000 hits on YouTube, and it was viewed an additional 1,200 times by stakeholders at Cancer Care Ontario and within the Regional Cancer Programs.
    • Viewers were asked to answer the following question on a scale of 1–10 (10 being total understanding) via an online survey before and after viewing the Person-Centred Care Guideline Video: “How would you rate your understanding of the concepts of patient experience and person-centred care?”
    • The mean response to this question prior to viewing the PCC video was 7.84; it was 9.18 following the PCC video. This represents a significant change, indicating that understanding of the concepts of patient experience and PCC among viewers increased after viewing the video.

Continued support for patient engagement

  • Patient and family advisors provide valuable contributions to our programs and initiatives through their membership on provincial program committees, working groups and project teams that span care provided throughout the province.
  • Asking patient and family advisors about their experience working with Cancer Care Ontario is an important step in strengthening engagement efforts. Cancer Care Ontario has developed a patient and family advisor experience survey to continue promoting the evaluation of ongoing patient and family engagement activities. This will further demonstrate the value of patient and family advisors at the organizational, regional and provincial level. The tool will be launched in June 2016.

Find out more

View Notes

  1. Institute for Patient-and Family-Centered Care [Internet]. Bethesda (MD): Institute for Patient- and Family-Centred Care; 2014. Frequently asked questions; [cited 2016 Mar 14]. Available from: http://www.ipfcc.org/faq.html.
  2. Cancer Care Ontario. Improving Ontario’s health system through patient and family engagement. Toronto: Cancer Care Ontario; 2014. Available from: https://cancercare.on.ca/common/pages/UserFile.aspx?fileId=322678.
  3. Foot C, Fitzsimons B. The policy and practice of measuring patient experience. Nurs Manage. 2011; 18(3):18–19.
  4. The Beryl Institute [Internet]. Bedford (TX): The Beryl Institute; 2014. Defining patient experience; [cited 2016 Mar 14]. Available from: http://www.theberylinstitute.org/?page=DefiningPatientExp.
  5. org.uk [Internet]. The Health Foundation; 2014. Person-centred care: from ideas to action; [cited 2016 Mar 14]. Available from: http://www.health.org.uk/publication/person-centred-care-ideas-action.
  6. Adler NE, Page EK, editors. Cancer care for the whole patient: meeting psychosocial health needs. Washington (D.C.): The National Academies Press; 2008.
  7. Epstein RM, Street RL. Patient-centered communication in cancer care: promoting healing and reducing suffering. NIH Publication No. 07-6225. Bethesda (MD): National Cancer Institute; 2007.
  8. Hack TF, Degner LF, Parker PA. The communication goals and needs of cancer patients: a review. Psycho-Oncology. 2005; 14:831–845.
  9. Wong WS, Fielding R. The association between patient satisfaction and quality of life in Chinese lung and liver cancer patients. Medical Care. 2008; 46:293–302.
  10. Kim S et al. Self-reported experience and outcomes of care among stomach cancer patients at a median follow-up time of 27-months from diagnosis. Supportive Care Cancer. 2008; 16:831–9.
  11. Frojd C, Lampic C, Larsson G, von Essen L. Is satisfaction with doctors’ care related to health-related quality of life, anxiety and depression among patients with carcinoid tumours? A longitudinal report. Scand J Caring Sci. 2009; 23:107–16.
  12. Gupta D, Rodeghier M, Lis CG. Patient satisfaction with service quality as a predictor of survival outcomes in breast cancer. Supportive Care Cancer. 2014; 22:129–34.
  13. Gupta D, Lis CG, Rodeghier M. Can patient experience with service quality predict survival in colorectal cancer? Journal Health Qual. 2013; 25:37.
  14. Doyle C, Lennox L, Bell D. A systematic review of evidence on the links between patient experience and clinical safety and effectiveness. BMJ Open. 2013; 3:
  15. Arbuthnott A, Sharpe D. The effect of physician–patient collaboration on patient adherence in non-psychiatric medicine. Patient Educ Couns. 2009; 77:60–7.
  16. Sequist TD, et al. Quality monitoring of physicians: linking patients’ experiences of care to clinical quality and outcomes. J Gen Intern Med. 2008; 23(11):1784–90.
  17. Stewart M, Ryan BL, Bodea C. Is patient-centred care associated with lower diagnostic costs? Healthcare Policy. 2011; 6:27–31.
  18. Coulter A, Collins A. Making shared decision making a reality: no decision about me, without me. London (UK): King’s Fund; 2011.
  19. Mulley A, Trimble C, Elwyn G. Patients’ preferences matter: stop the silent misdiagnosis. London (UK): The King’s Fund; 2012.
  20. Cancer Quality Council of Ontario. Environmental scan: patient and family experience? [Internet]. Toronto: Cancer Care Ontario; 2013 June [cited 2014 Mar 18]. Available from:http://www.cqco.ca/common/pages/UserFile.aspx?fileId=287150.
  21. Canadian Institute for Health Information. [Internet]. Ottawa: Canadian Institute for Health Information; 2015. Patient experience; [cited 2016 Mar 15]. Available from: https://www.cihi.ca/en/health-system-performance/quality-of-care-and-outcomes/patient-experience.