The Lynx Group

Trajectory of Illness and Distress in Patients Undergoing Stem-Cell Transplantation

November 2016, Vol 7, No 10

San Francisco, CA—As a result of recent advances in therapy, indications for stem-cell transplant are expanding, along with the number of patients eligible for the procedure. However, the intense and cure-oriented nature of transplants can lead to various forms of distress in patients who undergo this treatment, said Christina K. Ullrich, MD, MPH, Pediatric Oncology, Dana-Farber Cancer Institute, Boston, MA, at the 2016 Palliative Care in Oncology Symposium.

Dr Ullrich described the uncertain trajectory of patients undergoing transplantation and offered some clinical pearls for managing their symptoms.

“We want to ensure that patients live not only longer, but as well as possible. Collaboration, communication, and advance preparation are important ways of mitigating distress in this unpredictable and high-stakes setting,” she said.

Before the Transplant Period

Each phase of the transplant trajectory poses different challenges for patients and providers, Dr Ullrich reported. In the pretransplant period there is high psychological distress, which peaks around the time of hospitalization and decreases approximately 1 week after the stem-cell infusion, she explained. This pretreatment distress can predict treatment-related pain, anxiety, long-term well-being, and, according to some studies, survival.

“Patients who are better emotionally supported actually have better survival,” said Dr Ullrich, noting that this early period presents an opportunity for providers to support patients struggling to cope with a significant stressor.

“We can improve [patients’] adjustment to illness and their life posttransplant, but this requires expertise and skill to talk about these issues. Studies have shown that we are not good at detecting emotional distress,” she said.

According to Dr Ullrich, patients often believe that transplant is their only option, and therefore do not appreciate the potential consequences, anticipating the acute effects but not the downstream risks. Talking about mortality does not increase distress in this population but actually helps them, she added.

“Patients need an opportunity to discuss their fears,” Dr Ullrich said, emphasizing that this is an ongoing conversation. “Providers also have to review this information in non-crisis times.”

During the Transplant Period

Although patients experience high physical symptom burden during the transplant period, many symptom management advances have occurred in this setting, Dr Ullrich reported. However, because oncologists are often focused on treating the disease, they tend to view these symptoms as inevitable and do not adequately address physical distress, she said.

The symptoms during the transplant period are complex and varied. Dr Ullrich said that symptoms tend to increase until the patient’s white blood cell count reaches the nadir; the symptoms then gradually improve during the course of engraftment.

Delirium can occur during this period, and can be very distressing, with persistent effects on memory, executive functioning, depression, and anxiety.

“Given its persistent effects on long-term outcomes in transplant, delirium is important for us to think about,” she said.

The Posttransplant Period

After transplant, graft-versus-host disease (GVHD) produces a myriad of symptoms and can have a great effect on a patient’s recovery and quality of life. GVHD can occur in acute and chronic forms, which are treated differently, depending on the symptoms.

“The challenge for us is figuring who is at most risk for these poor outcomes. GVHD is one of the most important, but pretransplant conditions, primarily psychological, are also important,” said Dr Ullrich.

For most patients, quality of life returns to baseline within 1 year, but physical and emotional effects may linger during the “integration” period, she said. Many patients may resume their previous roles and activities, but their health may not be fully restored.

“Many patients don’t expect their circumstances after transplant, and the amount of discordance between what they expected and what happens is associated with the degree of distress that they have. Managing expectations for transplant is very important,” Dr Ullrich concluded.

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