HSCT in MS challenging; patients need multidisciplinary care: Study
Researchers call for 'holistic care pathway' for stem cell transplant patients
People with multiple sclerosis (MS) who undergo an autologous hematopoietic stem cell transplant (HSCT) — which uses a patient’s own stem cells — face unique physical and emotional challenges at every stage of the process, from balancing hope and fear when deciding on moving forward with the treatment to making sense of its aftermath, according to a small study by researchers in Ireland.
While further study is needed to understand the experience of undergoing HSCT in finer detail, these findings show the importance of tailoring planning and care to individual needs to help patients make an informed decision on how to be treated and recover better, the team noted.
“HSCT is a complex treatment, both physically and psychologically for [people with] MS,” the researchers wrote. “A comprehensive and holistic care pathway is required to support [people with] MS at all stages of the treatment process.”
Titled “A qualitative study on the experiences of autologous haematopoietic stem cell transplant for Multiple Sclerosis,” the study was published in the journal Multiple Sclerosis and Related Disorders.
Talking one-on-one with MS patients about their HSCT experiences
In MS, a faulty immune system mounts an inflammatory attack that damages the myelin sheath surrounding nerve fibers, causing the disease’s motor and nonmotor symptoms. The goal of HSCT is to reset the patient’s immune system — by eliminating those faulty immune cells — and then rebuild it with patient-derived bone marrow-derived stem cells, which give rise to all blood cells in the body.
“[This approach] has been found to have high rates of effectiveness for people with relapsing MS with high levels of disease activity and resistance to the most efficacious diseases-modifying therapies,” the researchers wrote. In relapsing MS, periods when symptoms worsen are followed by periods of recovery, when symptoms ease.
Some evidence also suggests HSCT stabilizes disease in people with progressive forms of MS, who typically experience a continuous disease progression. However, according to the team, “further trials are required to assess if the benefits of HSCT for these patients outweigh the associated risks.”
Those are assessments from the clinician’s point of view. To better understand how MS patients view HSCT, a team of researchers from several universities in Ireland interviewed 12 adults with MS who had undergone the procedure within the previous 10 years.
The participants were nine women and three men, who ranged in age from 28 to 48. Nine had relapsing-remitting MS and three had secondary progressive MS.
Because HSCT is not available in Ireland for people with MS, “patients must travel abroad for the treatment, which has cost, time, and social support implications,” the researchers noted. Eight of the patients underwent HSCT in the U.K., while three had the transplant in Russia, and one in Mexico. For most patients, the procedure was funded through insurance or a public health system; four funded the treatment themselves or through fundraisers.
Conducted online, the interviews were designed to understand the patients’ experiences with the transplant process, including their decision to have the treatment, how it went, and how well they recovered from it. Records of the interviews were analyzed to find common themes.
Patients express no regrets over stem cell transplant, per study
The results revealed three main themes. The first was balancing hope and fear when deciding on the treatment, with patients weighing the risks and seeking to manage expectations regarding the benefits of HSCT.
In addition to feelings of being unwell, patients experienced fatigue, and dealt with an increased risk of infection. The researchers also noted that “a potential side effect of HSCT is infertility, and this posed a significant dilemma for some participants when evaluating what they were willing to risk for the treatment.”
While a transplant was described by some patients as their “only option,” all “felt a strong sense of hope for halting progression of MS, a driving factor for deciding on HSCT as a treatment,” the researchers wrote. All of the patients also emphasized the importance of “seeking balanced information to support managing expectations,” the team noted.
The second theme covered the range and intensity of emotions experienced by patients during their journey through treatment and the recovery period. Each patient “had an individual experience of the treatment, impacted by a range of physical and emotional factors,” the researchers wrote.
While some patients found post-HSCT recovery to be “straightforward,” others faced complications and uncertainty. Patience was important as they waited for symptoms to ease, making the process both challenging and hopeful, according to the researchers.
“I always used to break things down into … small goals to get through them,” one patient said. “Within [each] day was the challenge of just getting through.”
Another patient said: “I knew that it would take a while. I knew that recovery would be slow.” But, this individual “was probably a little bit surprised by how slow it was, which I shouldn’t have been? But I was kind of going, ‘why am I not sort of hopping about already? … How can I have not recovered?”
When deciding on this treatment, there are many considerations for patients and their healthcare team. These can include burden of disease, timing, and risk of complications. … The intensity of the HSCT experience underscores the importance of holistic support.
The third theme revolved around adjusting to outcomes — that is, how patients made sense of how well HSCT worked.
In general, according to the researchers, the patients expressed no regrets about undergoing HSCT, regardless of outcomes. For many, symptoms of MS eased or remained stable after the procedure.
“It really does feel like it’s giving me back my life because I felt like my life was just dominated by MS for years,” one patient said.
However, some other patients — including one whose disease worsened — were not so sure of whether treatment had a positive effect.
“I don’t know whether having this procedure has actually had a benefit,” another patient said. “So [the MS] got worse, but if I hadn’t got [HSCT] done, would [the MS] have gotten much worse now, you know what I mean?”
Noting the small number of patients involved in this study, the team called for more research into the experiences of MS patients who underwent HSCT — and those who chose not to have the treatment.
“Future research with [people with] MS who decided against receiving HSCT may shed [additional] light on the decision-making process and factors that influence this decision,” the researchers wrote.
Overall, according to the team, “when deciding on this treatment, there are many considerations for patients and their healthcare team. These can include burden of disease, timing, and risk of complications. … The intensity of the HSCT experience underscores the importance of holistic support.”
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