Dr. Jonas Mattsson, director of the Hans Messner Allogeneic Transplant Program at the Princess Margaret hospital.DAVID COULSON/Supplied
Patients typically spend 30 days in hospital when they receive an allogeneic, or donor, stem cell transplant. Not Donna Millar.
After her stem cell transplant to treat leukemia, Ms. Millar convalesced in a home environment with her sister for company. She slept uninterrupted, in privacy. She ate whatever she liked, whenever she pleased. And instead of being cooped up on a ward in her hospital gown, she got dressed and went outside for walks every day.
Ms. Millar, 70, was the first to participate in a new at-home program for allogeneic stem cell transplant patients at Toronto’s Princess Margaret Cancer Centre in the fall of 2021. Since then, the program, called ALLO@Home, has treated close to 20 patients. It provides care to people in their own space, giving them greater comfort and autonomy. And, according to the doctor who is leading it, it leads to better health outcomes.
“It forces you to get up, keep moving,” Ms. Millar, who added that she is doing well and that receiving at-home care helped her get there more quickly. “You eat better, you sleep better and you move around more. You’re more active.”
Once unthinkable, the concept of delivering at-home care to stem cell transplant patients is gaining momentum. Programs similar to ALLO@Home have been introduced in North Carolina, for example, and in parts of Europe.
Before relocating to Toronto and spearheading ALLO@Home, Jonas Mattsson, director of the Hans Messner Allogeneic Transplant Program at the Princess Margaret, led a similar, long-standing program in Stockholm, Sweden. There, he and his colleagues found that patients who received care at home had a higher two-year survival rate, compared with those who stayed in hospital. Home care patients were also less likely to contract infections and had a three-fold lower risk of developing a severe immune condition called graft-versus-host disease.
As Dr. Mattsson explained, the introduction of home care for stem cell transplant patients in Stockholm dates back to 1997, and was driven by the demand to perform more of the transplants amid a shortage of hospital beds. At the time, he said, several other hospital programs were already offering home care options to vulnerable patients, such as children with cystic fibrosis.
Yet when his mentor proposed caring for stem cell transplant patients at home, the idea was met with fierce opposition from colleagues in other departments, Dr. Mattsson said.
“They were furious. They were screaming and they were accusing my mentor of trying to murder the patients,” he said.
Dr. Mattsson recalls having some hesitations himself. He felt a greater sense of control when patients stayed in hospital. But over time, he began to see how beneficial it was for them to be at home.
“I’ve never seen such an impactful effect on treatment,” he said.
Adapted from the model he used in Stockholm, ALLO@Home works as follows. In preparation for the transplant, the recipient first undergoes conditioning, which involves chemotherapy and sometimes radiation therapy to destroy cancer cells and make way for the new stem cells. This process impairs the immune system. During this stage, the patient may be required to stay a day or two in hospital. But if they are stable, they are allowed to either to head home if they live nearby, or, for those who live outside the Greater Toronto Area, go to a downtown condo, arranged through the charity StayWell.
The patient is admitted to hospital on the day of the transplant, which is similar to a blood transfusion. If all goes smoothly, they can return home or to the condo the next day.
After an additional therapy to fend off an immune reaction from donor cells, home care usually officially starts on the fifth day after the transplant. A nurse practitioner visits the patient every day and brings blood samples back to the hospital for analysis. Patients are also provided the equipment they need to check their own blood pressure, temperature and oxygen levels, and a nurse checks in on them by phone every four hours, except during the night.
Currently, patients must return to hospital for any intervention they may require, though Dr. Mattsson said he hopes to eventually provide some treatments, such as transfusions, at home as well. “Because why should patients come to the hospital? Why can’t we go to them?”
Dr. Mattsson believes patients recovering at home fare better for several reasons. Even though they experience as much pain and discomfort as those in hospital, they are able to sleep better in their own beds, uninterrupted by the sound of machines and the comings and goings of staff. They are more likely to eat well, in part, because they don’t rely on hospital food, but also because they are motivated to do so to avoid hospitalization.
Although the hypothesis is not yet tested, it is possible their microbiomes are healthier when they are exposed to a diversity of bacteria at home and among family members, Dr. Mattsson said. And patients are much more active at home. (In this regard, he tries to implement some of the benefits of home care into hospital care – for example, by encouraging patients to get out of bed and walk around.)
Dr. Mattsson suggests patients also retain their sense of self to a greater extent in their own environment. They often view their doctors and nurses as their coaches or guides, whereas hospital stays tend to encourage people to take a passive role in their health, he said.
Contrary to what the early detractors in Sweden believed, home care does not appear to put patients at any greater risk. In a phase I study, published in the journal Transplantation and Cellular Therapy in April 2022, Duke University researchers in North Carolina found no evidence that home care outcomes were inferior to standard-of-care treatment for hematopoietic (blood-forming) cell transplant patients. A 2020 study by researchers in Spain found home care was also less expensive, and increased the health care system’s capacity to perform more transplants.
For Ms. Millar, the ALLO@Home program was a different experience entirely compared with an earlier stay in hospital when she was first diagnosed with leukemia in January 2021. Back then, in the midst of a COVID-19 wave, she felt isolated and lonely on her ward as she underwent chemotherapy.
When she received her stem cell transplant, Ms. Millar, who lives in Newmarket, Ont., stayed in one of the downtown Toronto condos with her sister. She felt well-supported by her health team, whom she could reach directly at any time by phone, and she knew she could go back to the hospital any time she needed.
In one’s own space, she said, “emotionally and physically, you’re very much stronger.”