SCD patients’ stem cell transplant brings better health, struggles

A small study has found that people with sickle cell disease (SCD) may see improvements in their physical, mental and social health after a stem cell transplant, and it may help them achieve their personal life goals. Can

Still, challenges remained as they “faced 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-method study.,” Posted in Transplantation and Cellular Therapy,

These included emotional struggle and feeling overwhelmed. To address this, the researchers said, doctors “should aim to create realistic expectations prior to transplant and provide timely psychosocial care.”

People with SCD have abnormally large red blood cells that do not live as long as healthy people. They are also more sticky, which increases their risk of blocking blood flow throughout the body.

This can cause a range of symptoms, from painful episodes – known as vaso-occlusive crisis or VOC – to recurrent infections and anemia, which occurs when there are not enough red blood cells to carry oxygen to the tissues. There are no cells.

The only cure is a stem cell transplant, a procedure that destroys the patient’s bone marrow cells to make room for stem cells obtained from a healthy donor. Stem cells can give rise to different types of blood cells, which means that abnormally shaped red blood cells can be replaced by healthy ones.

While having a stem cell transplant may lead to a better quality of life, “preexisting expectations of living a healthy life may influence perceptions of treatment success or failure,” the researchers wrote. “A thorough understanding of physical, mental and social health before and after recovery is essential to meeting the needs of this growing group of patients.”

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Transplant was ‘difficult, but worth it’

Researchers from the Netherlands studied the perspectives of adult SCD patients on the changes they experienced following curative stem cell transplantation.

They interviewed 10 people aged 19-49 who had undergone stem cell transplants 2.7 years earlier at Amsterdam University Medical Center, The Netherlands. Only one was on immunosuppressive treatment at the time of the study. One or two researchers interviewed each patient, either face-to-face or via videoconferencing, for an average duration of 48 minutes (ranging from 30 to 70 minutes).

The interviews touched on seven areas of the patients’ lives before, during and after the transplant. These included pain, physical and mental well-being, attitude, education or work, family and friends, and participation in activities.

From the interviews, it became clear that SCD affected all aspects of physical and mental health.

One patient said, “I was just someone who was sick often.” “I was, to put it briefly, basically traumatized by [SCD],

The disease also took a toll on their social health, with patients feeling restricted from engaging in social activities and sports, such as swimming, cycling and fitness.

In the year following the transplant, most described the procedure as “difficult, but worth it.” Many people said they had side effects, such as fever, headache, skin changes, hair loss, intestinal disturbances, irregular menstrual periods, and weight gain.

While they were informed about problems that might arise during or after a transplant, the problems “often came as a surprise,” the researchers wrote.

At the time of the study, two patients had pain from avascular osteonecrosis, which occurs when bone tissue dies due to lack of blood supply. Three others continued to have fatigue despite having a normal red blood cell count.

While some saw improvements in their mental health, others saw emotional struggles and expressed a need for psychological help.

Despite this, most patients saw an improvement in their social health.

“The transplant was beneficial not only for me but also for my family. “I will do everything to not have any more crises and take that powerless feeling away from them,” said one patient.

The transplant gave patients the opportunity to fulfill their personal life goals, from playing sports to getting a driver’s license or job, buying a car or a home, or even traveling.

One patient said, “I noticed that when I got well it felt like a whole new world opened up to me, so I wanted to do everything at once.”

The researchers also used the Patient-Reported Outcome Measurement Information System (PROMIS) to look at nine measures of physical, mental and social health. Measures are expressed in 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 fell within the normal range compared to the reference (normal) population. Half of the patients scored within the normal range on all or eight of the PROMIS measures.

In general, patients saw improved physical, mental, and social health after stem cell transplants. Still, the researchers said patients should be aware of issues that may arise after a procedure.

“Regardless of whether this reality meets their expectations or is valued as an improvement, they face challenges that call for awareness,” the researchers wrote. “Clinicians can use the insights gained from our and other studies to identify the needs of SCD patients undergoing palliative treatment, manage their expectations in advance, and establish SCD patient-tailored pre- and post-transplant psychological care.” can do.”

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