||As of this Report
|Access to comprehensive cancer patient education services
|Experience with patient education resources
| See Methodology and Approach to find out how the ratings are calculated.
In 2015, 13 out of the 14 regional cancer centres in Ontario reported having an identifiable patient education program. As of 2015, all regional cancer centres offer patient education curricula on cancer treatment, and several centres offer specific curricula on clinical trials. Only a few centres offer specific education on cancer rehabilitation.
The “Your Learning Matters” survey was implemented over 2 consecutive years to assess the current state of patient education at cancer centres across Ontario. Results from the survey show that 76% of respondents felt the information provided at the regional cancer centre was “very helpful” in supporting them to understand their cancer, while 78% stated they received sufficient information to help them manage their cancer care.
What is patient education?
In my words
Cancer patients and their families are stressed enough. When someone doesn't receive information or answers to questions in a timely manner, the stress level increases which doesn't help the patient or their family members get on with getting well.
Patient education provides patients and their families with the knowledge and tools they need to understand and manage their cancer. Effective patient education improves the understanding that patients have of their health condition and supports them in becoming active participants in the decision-making process and the management of their care. People with cancer who have access to effective education are empowered, better able to navigate the healthcare system and more capable of making choices based on their values and preferences. By being better informed, people with cancer can have greater influence over their care at every step of the experience.
Cancer Care Ontario’s Patient Education Program
The vision of Cancer Care Ontario’s Patient Education Program is to improve the experience of people living with cancer through the provision of evidence-based, person-centred education. The Program contributes to the strategic objectives of Cancer Care Ontario’s Ontario Cancer Plan IV by advancing the quality of patient education services throughout Ontario.
Regional patient education leads support, develop and maintain quality patient education activities throughout the region by working together with the regional cancer centre team, community hospitals, organizations and Cancer Care Ontario’s Patient Education Program in their area. They actively engage patient education providers from across the Local Health Integrated Network (LHIN) to implement the Patient Education Program’s guidelines, standards and resources. In collaboration with the Provincial Patient Education Program, they provide tools and curricula (both online and in person) to enhance patient knowledge and improve healthcare provider competencies in delivering effective patient education.
The Provincial Patient Education Program ensures that patients and families have access to the right training, information, tools and resources at the right time in order for patients and families to improve their understanding, communication, decision-making, self-management and quality of life.
How is oncology patient education evaluated in Ontario?
Patient education programs at regional cancer centres are evaluated through a comparison with the standards set out by the Program in Evidence-Based Care framework Establishing Comprehensive Cancer Patient Education Services: A Framework to Guide Ontario Cancer Education Services (the Framework)1. The Framework identifies evidence-based recommendations to establish comprehensive patient education programs across regions. Regional patient education leads are asked to evaluate their centre’s patient education programs against the Framework’s recommendations by using the Patient Education Program Survey on a biannual basis. This survey includes questions on whether they have an identifiable patient education program in place and what topics are covered by patient education curricula.
In the last 2 years, the Patient Education Program has launched a patient survey called “Your Learning Matters” to understand the types of education and information that patients and families receive, determine how it has helped them through their cancer experience and identify any gaps in their knowledge.
The Ambulatory Oncology Patient Satisfaction Survey (AOPSS) measures the patient experience regarding the information, communication and education domains. With growing work and interest related to the sexual health needs of patients, this year’s program is highlighting the AOPSS indicator related to the provision of sexual health information.
What do the results show?
All regional cancer centres offer some patient education curriculum (Figure 1).
- In 2015, all 14 regional cancer centres offered a patient education curriculum on treatment, and 10 or more centres offered a curriculum on orientation, general cancer info, psychosocial support and survivorship.
- Cancer Care Ontario created the role of regional patient education lead, which has allowed for the expansion of patient education programs across the province.
- Only 5 centres offer an educational curriculum on rehabilitation and clinical trials.
Approximately three quarters of respondents from “Your Learning Matters” survey found information from their regional cancer centre “very helpful” in understanding and managing their cancer (Figure 2).
- Among respondents, 76% felt information from their regional cancer centre was “very helpful” for understanding their cancer in 2016 (compared to 73% in 2015).
- The percentage of respondents who felt information from their regional cancer centre was “very helpful” for managing their cancer care also rose from 74% in 2015 to 78% in 2016.
Less than half of respondents to the AOPSS found they had enough information about changes in sexual activity (Figures 3 and 4).
- Patients who responded to the AOPSS indicated that they did not get enough education about possible changes in sexual activity that might result from their cancer diagnosis or treatment.
- Less than half of patients (approximately 47%) stated they received enough information and that varied by type of cancer, ranging from 34% of melanoma cancer patients stating their information on sexual activity was sufficient compared to 67% of prostate cancer patients (Figure 3).
- A higher percentage of males (50%) than females (44%) stated they received enough information about possible changes in their sexual activity (Figure 4).
- Overall, emotional support measures have remained consistent from FY2012/2013 to FY2015/2016, and they remain the lowest score of the 6 patient experience domains (55%). Additional AOPSS measures are also available.
Why is patient education important for patient care?
Effective patient education improves patient outcomes and experiences, and it reduces healthcare system costs.
- Health information that is clear, easy to understand and evidence-based empowers people with cancer and their families to better navigate the system. It allows them to make informed decisions that are based on their values and preferences2,3,4.
- Health literacy is the ability to access, understand, evaluate and communicate information as a means of promoting, maintaining and improving health in a variety of settings across the life course5.
- Low health literacy is associated with poorer health, chronic disease, more medication errors, less preventative care, more emergency care, increased hospitalization and higher mortality6,7,8,9.
- Established and accountable patient education services that are available across regional cancer centres ensure that all people with cancer in Ontario who receive treatment will have access to high-quality information and education resources.
- There is evidence that effective patient education improves the following:
- knowledge and understanding of disease and treatment;
- treatment compliance;
- symptom management;
- ability to cope;
- self-management and self-care;
- health outcomes and survival; and
- quality of life.
Access to sexual health information and resources can improve patient quality of life.
- The diagnosis and treatment of cancer often is associated with significant sexual dysfunction10. Sexuality may be affected by changes in appearance, physical side effects (e.g. pain, erectile dysfunction, vaginal dryness etc.), and emotional and relationship changes that occur as a result of treatment or the diagnosis itself. Across disease sites, estimates of sexual dysfunction after cancer treatment range from 40% to 100%10.
- To date, there is little guidance available for healthcare providers on how to address sexual dysfunction in cancer patients. In an attempt to address this gap, the Psychosocial Oncology Program is sponsoring the development of a guideline by the Program in Evidence-Based Care that will inform healthcare practitioners of effective interventions for addressing sexual dysfunction in cancer patients and survivors. Additionally, the Psychosocial Oncology Program maintains a Sexual Health in Cancer Community of Practice, which meets quarterly by teleconference and occasionally in-person. It aims to address other challenges that impede the incorporation of sexual health into cancer care and its ultimate goal is to improve the experience for patients, survivors and their partners.
- The Patient Education Program is gathering data on the quantity and quality of information that patients receive about sexuality in order to inform potential quality improvement initiatives. Historically, sexual concerns have not been explicitly addressed by clinicians, but there is a growing awareness of the importance of identifying sexual health issues and supporting people with sexual health information, education and psychosocial support in order to enhance their quality of life.
The provincial Patient Education Program will continue to measure the patient experience in the context of education and to create evidence-based, person-centred tools that empower and engage people with cancer. These will include a focus on sexual health, self-management, exercise and cancer, as well as improving the teaching skills of healthcare providers.
Based on the “Your Learning Matters” survey, ongoing quality improvement initiatives related to identifying gaps in patient education will be implemented across regions and the province as a whole.
- Program in Evidence-Based Care (PEBC). Establishing comprehensive cancer patient education services: a framework to guide Ontario cancer education services. Toronto: Cancer Care Ontario; 2006. [cited 2016 Mar 8] Available from: https://cancercare.on.ca/common/pages/UserFile.aspx?fileId=14324
- Serxner S. How readability of patient education materials affects outcomes. Journal of Vascular Nursing. 2000; 18(3):97–101.
- The Joint Commission. The Joint Commission guide to patient and family education. 2nd ed. Oakbrook (IL): Joint Commission Resources; 2007.
- Wizowski L., Harper T, Hutchings T. Writing health information for patients and families. 3rd ed. Hamilton (ON): Hamilton Health Sciences; 2008.
- Rootman I, Gordon-El-Bihbety D. A vision for a health literate Canada: report of the Expert Panel on Health Literacy. Ottawa: Canadian Public Health Association; 2008.
- Berkman ND, Sheridan SL, Donahue KE, Halpern DJ, Crotty K. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med. 2011 Jul 19; 155(2):97–107.
- Agency for Healthcare Research and Quality. Patient-centredness. In: 2011 National healthcare quality report. Rockville (MD); U.S. Department of Health and Human Services; 2011. p. 161–170.
- Agency for Healthcare Research and Quality. Patient-centredness. In: 2011 National healthcare disparities report. Rockville (MD); U.S. Department of Health and Human Services; 2011. p. 163–178.
- Canadian Council on Learning. Health literacy in Canada: a healthy understanding. Ottawa: Canadian Council on Learning; 2008.
- Derogatis LR, Kourlesis SM. An approach to evaluation of sexual problems in the cancer patient. CA Cancer J Clin. 1981; 31(1):46–50.