Yet challenges remained as they “confronted a new and unfamiliar reality,” the researchers wrote in the study, “Physical, Mental and Social Health of Adult Patients with Sickle Cell Disease After Allogeneic Hematopoietic Stem Cell Transplantation: A Mixed Methods Studywhich was published in Transplantation and cell therapy.
These included emotional struggles and feeling overwhelmed. The researchers said that to address this issue, physicians “should aim to create realistic pre-transplant expectations and offer timely psychological care.”
People with SCD have abnormally shaped red blood cells that don’t live as long as healthy blood cells. They are also stickier, which makes them more likely to block blood flow throughout the body.
This can cause a range of symptoms, from painful episodes – known as vaso-occlusive crises, or VOCs – to recurrent infections and anemia, which occurs when there aren’t enough blood cells red to carry oxygen to the tissues.
The only cure is a stem cell transplant, a procedure that destroys a patient’s bone marrow cells to make room for stem cells taken from a healthy donor. Stem cells can give rise to different types of blood cells, which means that unusually shaped red blood cells can be replaced with healthy ones.
Although a stem cell transplant may improve quality of life, “prior expectations of living a healthy life could influence perceptions of treatment success or failure,” the researchers wrote. “An in-depth understanding of physical, mental and social health before and after recovery is needed to meet the needs of this growing group of patients.”
The transplant was “difficult, but it was worth it”
Researchers in the Netherlands studied the perspectives of adult patients with SCD on the changes they experienced after a curative stem cell transplant.
They interviewed 10 people, aged 19 to 49, who had undergone stem cell transplants an average of 2.7 years previously at university medical centers in Amsterdam, the Netherlands. Only one was still under immunosuppressive treatment at the time of the study. One or two researchers interviewed each patient, either face-to-face or via videoconference, for an average of 48 minutes (ranging from 30 to 70 minutes).
The interviews focused on seven areas of patients’ lives before, during and after the transplant. These included pain, physical and mental well-being, outlook, education or work, family and friends, and participation in activities.
From the interviews, it became clear that sickle cell disease affected all aspects of physical and mental health.
“I was just someone who got sick very often,” said one patient. “I was, to put it briefly, fundamentally traumatized by this [SCD].”
The disease has also adversely affected their social health, with patients feeling restricted from participating in social and sporting activities, such as swimming, cycling and fitness.
In the year following the transplant, most described the process as “difficult, but worth it.” Many said they had side effects, such as fever, headache, skin changes, hair loss, intestinal upset, irregular periods and weight gain.
Although they were told about the problems that could arise during or after a transplant, the problems “often come as a surprise,” the researchers wrote.
At the time of the study, two patients suffered from avascular osteonecrosis, which occurs when bone tissue dies due to a lack of blood supply. Three others continued to be fatigued, despite having normal red blood cell counts.
While some saw their mental health improve, others saw emotional struggles and expressed a need for psychological help.
Despite this, most patients saw their social health improve.
“The transplant was not only beneficial for me, but also for my family. I would have done anything to stop having seizures and take away that feeling of helplessness,” said one patient.
The transplant also gave patients the opportunity to pursue their personal life goals, whether it was playing sports, getting a driver’s license or a job, buying a car or a house, or even travel.
“I noticed that when I was cured, I felt like a whole new world opened up for me, so I wanted to do it all at once,” said one patient.
The researchers also used the Patient-Reported Outcome Measurement Information System (PROMIS) to examine nine measures of physical, mental and social health. Measurements are expressed as T-scores, which are standard scores with a mean of 50 and a standard deviation of 10 in a reference population.
Despite some variation, mean T-scores for all PROMIS measures were within normal limits relative to the reference (general) population. Half of the patients achieved scores within normal limits on eight or all of the PROMIS measures.
In general, patients saw better physical, mental and social health after stem cell transplantation. Still, the researchers said patients should be aware of issues that could arise after a procedure.
“Whether this reality lives up to their expectations or is valued as an improvement, they face challenges that call for awareness,” the researchers write. “Clinicians can use information from our and other studies to recognize the needs of patients with SCD undergoing curative treatments, manage their expectations in advance, and implement pre- and post-treatment psychological care. transplantation adapted to patients with SCD. »