Supportive care should be implemented promptly after patients receive CAR-T cell therapy, but as one expert notes, patients with cancer are often referred for this care too late.
Early integration of supportive care — which may include palliative care, if needed — alongside active CAR-T cell therapy may help patients achieve the best outcomes and improve quality of life, an expert said.
The topic of supportive care for patients undergoing CAR-T cell therapy was discussed by Natacha Bolaños, global alliances manager and regional manager, Europe for the Lymphoma Coalition, at the EBMT-European Hematology Association 4th European CAR-T Cell Meeting.
Bolaños emphasized the importance of treating the person rather than just the disease, especially with the excitement of CAR-T cell therapeutics and potential challenges with widespread introduction of this highly complex therapeutic modality. In addition, focus on caring for the patient is also important as the number of diseases that CAR-T cell therapeutics can treat is large and continues to grow.
“Early critical care will play an important role in maximizing the benefit of CAR-T therapy by facilitating the safe and effective management of those patients that received the therapy but also during the course of their entire treatment,” Bolaños said. “To achieve this goal, we need to invest in hope, in optimism, but also in resources, time, efforts and to analyze pretty well what the current clinical practice lets us achieve and what is missing in that context.”
Perspective is a critical component of figuring out which type of supportive care patients need when treated with CAR-T cell therapy. These perspectives can include who the patient is, the situation they live in, personal circumstances, their needs and their viewpoint, Bolaños said.
Patient-reported outcomes are very important when a health care team determines what patients want for supportive care. There is little published research on the patient experience and the symptom burden related to CAR-T cell therapy, Bolaños said. In addition, the studies examining survivorship concerns in this area are limited, though it is promising that more studies will be published are patents treated with CAR-T cell therapy are followed up for longer than two years. This will provide clinicians with “true information,” Bolaños said.
Supportive Care Versus Palliative Care
Oftentimes, the terms “supportive care” and “palliative care” are used interchangeably, although the goals of each type of care often outweigh their distinctions.
“Some studies have shown that patients and providers have a more favorable impression of the term supportive care rather than palliative care,” Bolaños said. “This is because palliative care is commonly associated with end of life. This is strongly connected with the perceptions of hope and the perceptions of fear who are not necessarily the two sides of the same coin. It depends on how you analyze it.”
Supportive care is defined as the delivery of necessary services for those living with or affected by cancer and can include emotional, physical, social, informational, spiritual and practical needs during the entire course of treatment. Of note, these needs can change throughout the trajectory of treatment.
“We are moving from the needs related to physical comfort, freedom of pain, optimal nutrition, ability to carry out one’s usual day-to-day functions to the needs related to a sense of comfort, belonging, understanding and reassurance in times of stress and upset, but also the needs related to family relationships to community acceptance, to involvement in all that is happening around (them). It’s (also) related to the ability to cope with the illness experience with the consequences, including the need for optimal personal control.”
Palliative care focuses on improving the quality of life for patients and their families facing issues related with life-threatening diseases. In particular, it is more associated to preventing and relieving suffering through early assessment and treatment. Timely palliative care is dependent on timely symptom management, longitudinal psychosocial support and enhanced communication and decision making. These steps can lead to improved patient outcomes including improved quality of life and symptom control, greater satisfaction, less aggressive care and prolonged survival.
“As we see, it may be slightly the same in the way they are defined,” Bolaños said. “However, palliative care is explicitly recognized under the human right to health, and it should be provided through person-centered and integrative health services that pay special attention to the specific needs and preferences to individuals.”
Delays in Supportive Care
It is recommended for early supportive and palliative care should be administered alongside CAR-T cell therapy for specific blood cancers such as lymphoma, as it can be beneficial for advanced care planning and symptom management. Despite this recommendation, patients are often referred too late in their treatment for supportive and palliative care, so patients may not have the opportunity to discuss their wishes and priorities while they are well enough to do so, Bolaños said.
Health care teams may often delay introducing supportive care because of their durability of disease, Bolaños added. Patients may associate supportive and palliative care with end of life, so health care teams may be afraid of taking away a patient’s hope. Other factors that may delay referral to supportive or palliative care include uncertainty about a patient’s prognosis and the absence of a clear transition between the curative phase and palliative phase of treatment.
“That leads to delays in thinking about using or about referring to that care,” Bolaños said. “Patients with blood cancers and with lymphoma often have a rapid or predictable trajectory of decline. There are misperceptions equating palliative care and supportive care with that end-of-life care, so (there’s a) lack of exposure, that lack of proper, standardized and harmonized integration.”
There are also several triggers for specialty palliative care consultations for patients with lymphoma. These may include high or refractory symptom burden, misperceptions about illness understanding, complex discussions about goals of care, difficulty coping with illness and recurrent unplanned hospital admissions.
“Although early engagement in these discussions is essential, this is difficult in real time for patients with lymphoma, so these practical triggers to conduct these conversations are critical,” Bolaños said.
She concluded that it is important to integrate supportive care early on in the treatment course, even though the perception of this care may be different depending on where a patient is on their understanding of what the treatment offers. In addition, she emphasizes the importance of incorporating supportive care early so that the caregiver can participate as well.
“The journey for CAR-T (cell therapy) needs to be done together with a caregiver, or that's the ideal situation,” Bolaños concluded. “Early integration of supportive care alongside active treatment should be the model of choice in a CAR-T (cell therapy) setting in order to achieve the best outcomes and improve quality of life.”
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