A sure sign of quality cancer care is when people living with cancer are receiving person-centred care. This type of care respects and responds to their preferences, needs and values. The goal of the Patient Reported Outcome Initiative is to improve the patient experience across the cancer journey by making it more person-centred. We will accomplish this by creating standardized measurements to evaluate how well we are able to offer quality improvements that have a real impact on cancer care across Canada.
The aim is that by 2017, all participating regions should have established a measurement and reporting cycle for patient experience. This will help guide improvements to care by introducing standardized screening assessment tools as well as interventions to care programs.
The Canadian Partnership Against Cancer has funded the Patient Reported Outcomes Initiative to facilitate and advance this important work. The following are a few of the projects in patient experience and patient reported outcomes that form part of this initiative.
Project overview and goals
The Improving Patient Experience and Health Outcomes Collaborative (iPEHOC) project was created to help implement a standardized core set of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). The idea is to help with integrating these measures in a meaningful way in clinical practice so that patients experience fewer symptoms and have a better overall cancer care experience.
The ultimate goal of the iPEHOC project is to develop a common and sustainable patient experience measurement system that can be used in all regions in Canada.
- We will implement PROMs for the standardized measurement of cancer pain, fatigue, anxiety and depression that also include a comprehensive symptom screen. We will use PREMs to indicate the quality and experience of care.
- We will engage health-care providers in the integration of PROMs to support communication, treatment decision-making and patient self-management.
- We will evaluate the iPEHOC measurement system based on how satisfied both patients and health-care providers are with it, how patients’ health has been affected and how much the system is being used.
- We will use active knowledge exchange methods to help get the iPEHOC measurement system up and running across Canada.
- Cancer Care Ontario, Toronto, Ontario
- Northeast Cancer Centre, Sudbury, Ontario
- Trillium Health Partners, Mississauga, Ontario
- Princess Margaret Cancer Centre, Toronto, Ontario
- Rossy Cancer Network in Québec, Montreal, Quebec
- McGill University Health Centre, Montreal, Quebec
- Jewish General Hospital, Montreal, Québec
- St. Mary’s Hospital, and their respective Aboriginal Cancer Control Units (this may include the First Nations, Inuit and Métis communities), Kitchener, Ontario
Project overview and goals
This project was designed to address the cancer patient experience in three Atlantic provinces: Nova Scotia, Prince Edward Island and Newfoundland and Labrador. The idea is to benefit adults living with cancer and their families by measuring patient-reported outcomes (PROs) in four important health areas: anxiety, depression, fatigue and pain as well as helping patients address these health concerns.
Attending to the physical, psychological, emotional, social, practical and spiritual challenges of our adult cancer patients allows us to treat patients and families in a more holistic way. By doing so, we are able to meet individual people’s needs, improve their quality of life and improve the overall patient experience.
- The existing Screening for Distress programs for adult cancer patients in Nova Scotia and Prince Edward Island have been expanded to include rescreening at multiple clinic visits in Nova Scotia and rescreening at the end of cancer treatment in Prince Edward Island.
- A Screening for Distress program has been successfully developed and is being implemented in Newfoundland and Labrador for all newly diagnosed cancer patients in centres where dedicated oncology resources exist.
- Nova Scotia has developed group psychoeducation sessions for patients and families that are focused on cancer-related sadness and depression; worry and anxiety; pain and fatigue in order to support screening for distress and distress management.
- Each of the provincial regions continues to work closely with their respective stakeholders by engaging clinical leaders, administrators, health-care providers and patients. They are also providing education sessions to share information.
- Programs are being evaluated using quantitative and qualitative methods including surveys of patients and health care providers.
- Nova Scotia Department of Health and Wellness, Halifax, Nova Scotia
- Cancer Care Nova Scotia, Halifax, Nova Scotia
- QEII Health Sciences Cancer Care Services, Nova Scotia Health Authority, Nova Scotia
- Cape Breton Cancer Centre, Nova Scotia Health Authority, Nova Scotia
- Cancer Care Program Eastern Health, Newfoundland
- Health PEI, Prince Edward Island Cancer Treatment Centre and Satellite Clinic, Prince Edward Island
Project overview and goals
The objective of this project is to enhance the person-centeredness of our cancer care systems. We will accomplish this through a culture of continual learning and quality improvement to the patient experience based on patient and family reported outcomes.
Feedback directly from cancer patients about their concerns will be routinely collected. This feedback will be used to improve the patient experience as well as to drive quality improvement activities across our organizations.
By building and implementing a standardized approach to the collection and analysis of patient reported outcomes (PROs), the three prairie provinces (Manitoba, Saskatchewan and Alberta) will create a large, consistent set of PROs. These PROs will be readily available so that they can continuously be evaluated and improved.
Through this work, we will create standardized responses to address aspects of care that have been identified by patients as needing improvement. These responses will be implemented both within each province and across all three participating provinces.
To meet these goals, we will do the following:
- Create a comprehensive and integrated provincial approach for the collection, analysis, and reporting of PROs.
- Use existing information technology, infrastructure and electronic medical records to facilitate PRO collection and make collection as easy as possible for patients, families and clinicians.
- Create a clear process for reporting, sharing and utilizing PRO data at the various levels.
- Facilitate inter and intra-provincial collaboration around quality improvement initiatives.
- Establish a cycle of continual learning that is driven by data so that we can provide more meaningful, timely support to patients and families.
- Alberta Health Services (AHS), Alberta
- Saskatchewan Cancer Agency (SCA), Saskatchewan
- CancerCare Manitoba (CCMB), Manitoba
Project overview and goals
Although evidence-based interventions exist for patients experiencing cancer-related distress, too often patients do not receive these interventions. A number of pan-Canadian initiatives have been undertaken to improve this situation. They include the creation of several clinical practice guidelines for oncology health-care professionals.
This project will implement and evaluate a programmatic knowledge translation (KT) intervention—the Therapeutic Practices for Distress Management (TDPM) program—at five Canadian centres.
The goal of the intervention is to improve the ability of health-care systems to help people living with cancer. They will offer evidence-based clinical practice guidelines to support four common distress problems: fatigue, pain, anxiety and depression.
By implementing and evaluating a program knowledge transfer of the clinical practice guidelines, this project will improve the health-care system’s care processes and patient satisfaction. This project will also look at patient reported outcomes (PROs) from using the Canadian Minimum Data Set to gather patient and family perspectives.
The intervention includes implementation of the following four components:
- a four module online course with real-time voice seminars
- a series of reflective practice sessions
- site mentors and champions to support frontline health-care providers
- tailored KT strategies to address barriers and enablers
The program will be evaluated by looking at the following:
- how feasible the integration was
- how well the program was accepted
- how well the overall process went
- pre-post testing of the effects of the intervention at the five Canadian sites
- Nova Scotia Health Authority, Nova Scotia
- Cancer Care Nova Scotia, Nova Scotia
- Centre hospitalier universitaire de Québec, Quebec
- University Health Network,Ontario, Grand River Regional Cancer Centre, Ontario
- Cancer Care Manitoba, Manitoba
- Canadian Association of Psychosocial Oncology (CAPO), Toronto, Onatrio
- Canadian Association of Nurses in Oncology (CANO/ACIO), Vancouver, British Columbia
Patient reported outcomes resources
These videos were created to promote the use of the Edmonton Symptom Assessment System-Revised (ESAS-R). The idea is to increase awareness of this screening for distress method with the hope that more people will use it. One video is geared towards patients and the other two towards clinicians. They highlight the benefits from both perspectives.