Working with partners across the country, the RCN is finding new ways to support patients’ psychological wellbeing
How would Julie Szasz characterize the distress screening process when she first started cancer treatments five years ago? “Pretty random,” says this patient advocate. “I had stage IIB breast cancer, so the treatments I was going through were protocol. They said 'She's young; she'll be fine.' So I thought, 'I'll be fine.' I overlooked a lot of things that would have helped me because I didn't believe — and nobody insisted — that this would be necessary for me, that I should get any psychosocial help”
Although it's well-known that distress seriously impacts cancer patients' outcomes, including adherence to treatment and quality of life, psychosocial care has lagged behind other treatment advances. Changing that is the aim of a new three-year joint project between the RCN and Cancer Care Ontario (CCO) called Improving Patient Experience and Health Outcomes Collaborative, or iPEHOC (pronounced EYE-pee-hoc). Szasz, who was rediagnosed with metastatic breast cancer two years ago, is one of four patient advisors for the project which will look at four specific symptoms — depression, anxiety, pain and fatigue — from diagnosis to treatment to survivorship or end-of-life care.
“In all the surveys across Canada, emotional distress is the one area where patients consistently and significantly reported being the least satisfied,” explains Dr. Zeev Rosberger, iPEHOC’s principal investigator and the Director of the Louise Granofsky-Psychosocial Oncology Program at the Jewish General Hospital). “The idea is that once we understand the patient's experience through the screening and outcome measures, we will be able to target the symptom and get the patient to the right intervention in a timely manner. And we know that is not happening as well as it should at this point.”
The right support at the right time
All cancer patients experience distress of some kind — from sadness to pain to trouble sleeping. “The literature reports that 35 to 45% of cancer patients experience sufficient emotional distress to warrant professional intervention,” explains Dr. Marc Hamel, project co-lead and Clinical Director of Psychosocial Oncology at the Montreal University Health Centre (MUHC) where field implementation testing will be done at the lung clinic. A lot of the distress can be managed by front-line staff, but about 15% of patients need referral to a mental health care professional. Adds Dr. Rosberger, “If you start doing the math, that's a lot of people.” In fact, the Canadian Partnership Against Cancer (CPAC) calls distress the “sixth vital sign.”
This is where iPEHOC comes in. “The screening is going to help us identify this 35 to 45% that can be assessed and responded to by the people already taking care of them, but also to identify the other 15% that needs more specialized care,” explains Rosana Faria, project co-lead and Clinical Psychologist at St. Mary's Hospital Center, where a pilot involving all patients supported by the pivot nurse is being implemented. A pilot will also take place at the JGH with gynecological oncology patients.
CCO has been doing routine distress screening for 15 years. The Montreal teams have done screening on a smaller scale, and are keen to learn from their Ontario colleagues' experience and build on it. iPEHOC is the first program of its kind in Quebec. “We want to standardize screening across Montreal, across the province, across the country so that every patient — whether they are seen in Montreal or elsewhere — can expect the same kind of assessment and screening,” says Dr. Hamel.
Northern needs
This includes specialized distress screening with adapted questionnaires for First Nations, Inuit and Métis cancer patients. “We know the tools that we have are not always appropriate for this population with their specific needs,” explains Dr. Hamel. “It's a language issue, it's a culture issue. If I ask them 'Are you anxious?,' that might not have the same meaning to them, so anxiety might not be the right word.”
In Quebec, iPEHOC is being rolled out at the JGH, the MUHC and St. Mary's as well as within Inuit, First Nations and Métis communities treated within the McGill RUIS (Réseau universitaire intégré de santé) with the long-term goal of contributing to the national implementation of standardized distress screening for cancer patients. The project is funded by a $1 million grant from CPAC, with the RCN providing $400,000 for staffing resources and the implementation of an electronic platform.
Screen Time
Patients will be offered distress screening at set intervals in their treatment journey using a tablet computer.
The Distress Assessment and Response Tool (DART) software — developed through a joint effort between Princess Margaret Cancer Centre in Toronto, CCO and CPAC — will assess their responses and generate a summary which assesses needs and interventionson an ongoing basis. DART, already integrated across all Princess Margaret clinics, builds on the ESAS (Edmonton Symptom Assessment System) used by clinicians in cancer care, and adds a pain inventory, a fatigue scale and anxiety and depression measures. The summary will in turn be provided to both the health team and the patient.
“What was really interesting to me is that this was about the patient experience and it really fit with the RCN mission and vision,” says Dr. Rosberger. Importantly, patients are very involved with designing the program, including making sure the questions and education materials are clear, as are members of the health care team, including nurses, oncologists, psychologists.
“One of the primary goals is to make it easy for patients to participate ,” explains Linda Tracey, a recovering breast and uterine cancer patient and iPEHOC patient advisor. “Cancer patients are already overwhelmed and a lot of them are elderly, and filling out these questionnaires just becomes something else they have to do. We have to help patients understand that it’s in their best interest to be actively engaged in this way.”
Patients on board
To make this happen, patient education materials, including a video and booklet, are being put together to explain how the screening works and what its benefits are. Patients will be given copies of their assessments and the entire health care team, including professionals in other hospitals, will be able to access them electronically.
For Faria, it's a win-win. “We are empowering patients, physicians and nurses with more knowledge. The patient is aware of what's happening, aware of the resources and is sharing in the decision-making.”
And this is why it’s so important to get buy-in from the patients, says Szasz. “From the get-go, patients have to feel that if something doesn’t feel right, then someone is addressing that. This is not just for research, it’s not just about statistics; it’s about helping patients right now.”