Three people from’Test your siblings’ graphic
Among the components of the online education is a section on donor matches for a transplant, which notes full siblings – brothers or sisters with the same two parents – "are the most likely to be a match." (Photo: UHN)

The number of allogeneic blood and marrow transplants (Allo BMTs) performed annually at Princess Margaret Cancer Centre has doubled since 2016. And, this year is expected to see the program expand even further.

While increased access to treatment and improved survivorship and quality of life mean better outcomes for patients, the larger clinic volumes are bringing new challenges for staff.

One area is education. An allogeneic stem cell transplant is a complex process that can often be time consuming for a clinician to explain to a potential recipient, and stressful for patients and families. A two-and-a-half-hour classroom session was developed with standardized content.

But those teaching the class reported that while understanding of the process grew, including the procedure, and other disease-related info, surveys after the sessions showed so did the anxiety of patients and their families.

The solution? Get Allo online.

For quick sign-in access to Allo online [Editor's Note: Link is no longer available]

"This is thinking outside the traditional patient education box," says Christine Piescic, Allogeneic Stem Cell Transplant Coordinator at the Princess Margaret. "We quickly realized that patients were leaving the classroom session with many questions, so our goal was to find a more sustainable and compassionate way to transfer knowledge to them."

Informing patients about allogeneic stem cell transplant in a sufficient and sensitive manner is challenging. Digital education provides an innovative solution to the stress of information overload and provider time constraints by making education:

  • Accessible anywhere and anytime
  • Easy to understand through the use of plain language
  • Digestible by being developed into micro-courses by topic, allowing patients to work at their own pace in their desired sequence
  • Offering the voices – and videos – of real patients in the online format

The Allogeneic Stem Cell Transplant Education Program features 11 different online modules on a wide array of topics ranging from the transplant process, donor matches, and complications & side effects to hand hygiene, what to expect in hospital, and financial impacts of the transplant process.

Each module takes about 15 minutes to complete and can be done in any order the learner chooses.

The idea of an online education system evolved over a few years. Princess Margaret clinicians reported increasing difficulty meeting the varied educational needs of patients in the clinic who were considering an Allo BMT.

While in agreement that a basic knowledge of stem cell transplantation and potential complications would assist patients in decision-making and general understanding, it was clear this conversation should ideally occur before meeting with the transplant team in order to facilitate discussion and enhance patient comprehension.

In 2015, members of the Allo BMT group decided to collaborate with the Cancer Education team to develop a classroom-based approach to learning, which featured content developed following a needs assessment of patients and clinical staff.

Graphic from the modules
The module on the transplant process includes an explanation of the pre-admission tests a patient completes, including clickable icons which provide details of each procedure. (Image: UHN)

The team hoped that face-to-face classes might help reduce the time spent in the clinic with each new patient and diminish process-driven anxiety. This class, which features content that is consistent, compassionate and relevant to both the patient population and the BMT staff, is offered every two weeks to patients and their families booked for Allo BMT consultation.

Once implemented, clinicians found that these classes were effective in reducing time spent in the consult and that patients were more prepared for Allo BMT. However, patients reported feeling stressed out and overwhelmed by the grueling two-and-a-half hour sessions.

The Allo Transplant Team once again paired up with the Cancer Education Team at the Princess Margaret. That group suggested taking the education to a digital platform.

The Cancer Education Team had worked on similar projects in different areas in the past, but not on this scale for cancer. The driving forces of their planning was to come up with a program for patients and families considering Allo BMT that improved informed decision-making and decreased decision regret and distress, while conscious of the need for self-management and the constraints of clinic time.

"The result is what we are calling an innovative 'health literate' education platform," Tina Papadakos, Senior Manager, Educational Design & Knowledge Translation in Cancer Education at the Princess Margaret.

"It has achieved the goal of using the class content as a springboard to create a digital platform that is easy to navigate, easy to understand, and can be accessed anywhere, anytime, supporting patients' needs while providing measurable, high-quality, consistent education."

The online program was co-developed by the Allo Transplant Program team, patients and members of the Cancer Education Team. It combines clinical expertise with the lived-experience of more than 60 patients and caregivers.

The response to the online modules has been overwhelmingly positive.

"I went back a few times to check things and could quickly find what I wanted because they were so appropriate and recognizable," one patient said.

"The language is very clear and easy to understand, which is important."

Another patient, referring to actual videos of PM Allo BMT patients five years post-treatment said: "His points are incredibly important. He's taking the words right out if my mouth."

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