How did we get here:
2006 – Frank and Debbi Sobey – facing a tough decision in light of a prostate cancer diagnosis. In 2006, they create the Soillse (the word means guiding light in Gaelic) Research Fund managed by the Dalhousie Medical Research Foundation to support research that will shed light on the problem of improving quality of life for cancer patients post treatment (Read the full story).
In 2016, Dr. Gabriela Ilie is hired as DMRF Endowed Soillse Research Scientist in Prostate Cancer Quality of Life Research, at Dalhousie University with primary appointment in Community Health and Epidemiology, dual appointment in Urology, and cross appointments in the Departments of Radiation Oncology and Psychology and Neuroscience. Dr. Ilie began to examine the needs and challenges of men diagnosed with prostate cancer, with the aim of actioning the findings into tangible programs aimed at improving the lives of prostate cancer survivors. She also began to explore how technology can be leveraged to enable implementation and sustainability of innovative models of patient education and patient empowerment as a means to support health system transformation.
The patient engagement in the research Dr. Ilie was developing began from day one of her appointment. She engaged the local prostate cancer support groups in NS, NB and PEI and began joining their regular meetings. She then engaged the physicians – and they really didn’t know how their patients were doing outside the medical appointments. At the end of 2016, it became obvious to her that the only way to find out how patients were doing was to ask the patients. Soon after that she developed an on-line survey (nscancer.ca) to assess the needs and quality of life of patients and survivors, and their partners, using scientifically validated questionnaires. This initiative was met with skepticism because of the common belief that men will be unlikely to agree to sit down in front of a computer and complete a long comprehensive survey about what their health and quality of life post-prostate cancer treatment.Patient talking about the importance of taking this survey for informing care and survivorship care plans. Clinicians talking about the importance of taking the survey for the medical system and the community.
Surveying the prostate cancer patients and survivors population (regionally and nationally) was the Phase 1 of the research leading to PC-PEP. In the spring of 2017, she launched the survey across Maritimes Canada (NS, NB and PEI). 500 Maritimes participants later, there was a pattern that was emerging.
And it was really very shocking at first to see just how much men, with a history of prostate cancer diagnosis and treatment, were actually suffering. Suffering from the side effects of their radiation, their prostatectomies, they had high levels of urinary incontinence, erectile disfunction, unmet emotional and social support needs, they suffered from fatigue, they had treatment regret and their relationships were suffering. And if you put all these things together it is not so surprising that when their measures of mental health were examined a silent epidemic of depression, loneliness and disconnect was uncovered. During these early days, Dr. Ilie recalls one of the patients saying: “You are there. This is happening. The doctor is telling you: “You have prostate cancer”. And you may be thinking to yourself there is not a damn thing you could do about it.”
Data Dr. Ilie examined from Atlantic Canada (Atlantic PATH) and national surveys (Canadian Longitudinal Study for Aging) corroborated the results found in her Maritimes survey. Results of these studies combined, showed that prostate cancer survivors had more than twice the odds of mental health illness compared to other men who never had a cancer diagnosis or men with other forms of cancer, they had urinary problems, sexual distress, and poor attendance to support groups.
In 2018, Dr. Ilie partnered with a radiation oncologist, Dr. Rob Rutledge, who treats prostate cancer, and they began pooling on the available science to create an intervention that could actually support these men, and address the health gaps in education identified by the patients, to improve their mental health and quality of life. Early that year, Dr. Ilie organized the first DMRF Soillse Research Scientist conference and presented the preliminary results of her survey. Attendees included, patients, partners of patients, urologists, radiation and medical oncologists, urology and radiation oncology residents, administrators, health promotion experts, and various stakeholders. During the conference they conducted brainstorming sessions in terms of what could be done to action this research into a practical solution for this cancer group. While reviewing the data with the audience and discussing the results, it became apparent that most men were not aware of the ways they habitually thought about their attitude towards their lifestyles, health and living, and how automatic they responded to a multitude of unhealthy living habits. Yet pre-habilitation science shows how our lifestyles, attitudes, behaviours, emotions, and thoughts can not only help us recover from an illness, but can serve as very strong pre-habilitation and preventative medicine.
Drs. Ilie and Rutledge presented the Prostate Cancer – Patient Empowerment Program (PC-PEP) intervention to the attendees, that used science and could potentially address all the needs the patients identified in their Maritimes wide survey. The program had incredible endorsement from the whole group attending the conference, and especially the patients.
Phase 2 – Prostate Cancer – Patient Empowerment program (PC-PEP) (Feasibility study)
Prostate Cancer – Patient Empowerment Program (PC-PEP) is a homebased on-line cost-effective intervention that consists of 6 months of daily emails with video links for strength exercises with increased difficulty levels, pelvic floor training, phone text alerts three times a day, to help with urinary incontinence, stress reduction through the use of a biofeedback device, dietary and relationship, social connection with men who are taking the program and mentors who have completed the program, and monthly group videoconference for support.
In 2019 PC-PEP was preliminary assessed on 30 men over a month. A battery of physical and psychological tests measured their stress brain response and heart rate variability, physical fitness, and quality of life indicators through a series of extensive quantitative and qualitative assessments, and weekly online compliance surveys. All 30 men showed up for the testing. 28 days later, men lost weight, had increased flexibility and, most importantly, their mental health improved significantly. EEG brain activity assessments showed that their brains have changed and responded significantly better to stressors. One of the men attendees had urinary incontinence for three years. After 28 days in the program his urinary incontinence went away.
The program is not only helping men going through the aftermath of a prostate cancer diagnosis, but it is now infiltrating into the community and helping their families. We heard from family members who say: “I can’t believe it! My parents are more fit than my husband and I, they are now eating carrots for snack and thy are talking about healthy eating habits and the importance of social connection!”
Phase 3 – Randomized Clinical Trial (Phase 3) PC-PEP Intervention vs. Standard of Care (Dec 2019-Dec 2022)
In 2019 we started a Phase 3 Randomized Clinical Trial 6 months intervention, 6 months standard of care comparison, for 1 year.
We recruited 140 patients in NS in 13 months (December 2019 to January 2020), 1 year ahead of schedule. 70 exit interviews later the men are giving a 9.6 out of 10 endorsement for the PC-PEP program to be standard of care from day one of diagnosis. The urologists and radiation oncologists are raving about the program. Patients are saying PC-PEP is a game changer! Men are testifying about the program and raving about what it has done to their life.
Phase 4 – Implementation Trial
Now we are now preparing an implementation trial (to be rolled out in September 2021) of the program, in Nova Scotia. The Nova Scotia Cancer program has given us written endorsement to roll it into the standard of care.
Future plans – We want to expand PC-PEP throughout Atlantic Canada (end of 2021, start of 2022) and the rest of the Canadian provinces (2022) and to other forms of cancer (breast, lung, colorectal, and others).
Impact – It is becoming more and more evident that PC-PEP represents a key step in transforming the medical system and promoting health in our region. Results from our studies now are revealing that PCPEP can empower the thousands of Atlantic Canadian men affected by prostate cancer to improve their quality of life related to treatment side effects, and the associated burden on their mental health. Furthermore, Pca patients and survivors share this knowledge and model health-promoting behaviours with their family, friends and colleagues. We hope the principles of PCPEP permeate into the community to create a healthier Atlantic Canada.
GRATITUDE and THANKS
Dalhousie Medical Research Foundation has been instrumental to Dr. Ilie and the Soillse lab she leads in securing funding so that this research could happen. With patients and physicians engagement, with the support she received from DMRF donors, and other research funding organizations (e.g., BHCRI, RNS) , the mandate of the vision Frank and Debbi Sobey had in 2006 is closer to fruition.
Together we are changing lives!