Palliative Care Important for Young Patients During ‘Identity Development’

Palliative care for adolescent and young adult (AYA) patients with cancer is important for symptom management and during a time of “identity development,” an expert told CURE®.

According to National Cancer Institute, palliative care is a type of care that improves the quality of life in patients with serious or life-threatening diseases, notably with symptoms and side effects they may experience from treatments. Palliative care is also used to attend to the “psychological, social and spiritual” challenges patients may experience, the institution stated.

In a recent study published on JAMA Network Open, palliative care for AYAs with cancer was shown to help decrease the severity of pain but did not show benefits for other symptoms. The study included 5,435 AYAs, in which 2,809 patients identified as male and 2,626 patients identified as female, and the median age at cancer diagnosis was 25 years.

Patients reported symptoms through the Edmonton Symptom Assessment System (ESAS) and rated their symptoms from zero (no symptoms) to 10 (worst possible symptoms). The symptoms included in the assessment were pain, tiredness, drowsiness, nausea, shortness of breath, lack of appetite, depression, anxiety and overall well-being, according to the study.

The results from the study reflected that the mean scores from the ESAS for pain decreased from 3.4 to 2.95 after receiving palliative care. The researchers noted that no other statistically significant associations were observed among the other symptoms in the assessment.

Still, the study’s researchers found that AYA patients who reported moderate or severe symptoms on the ESAS were likely to also receive palliative care afterward, compared with patients who reported milder symptoms.

READ MORE: Patients, Families and Providers Need to Be on the Same Page for Palliative Care

Although palliative care may not be associated with better symptom management, as the study determined, receiving palliative care is still important, specifically for AYAs as they experience a time of “identity development,” as one expert explained.

“For adolescents and young adults affected by cancer, it’s often their first serious medical event. For older people, that’s not necessarily true,” said Brad Love during an interview with CURE®. “The range of responsibilities and things on their daily minds are typically speaking differently in that young adults are earlier career stage, maybe fewer family responsibilities, maybe fewer community pressures, these things that are also part of their being as they’re trying to negotiate cancer.

“(The young adult life stage is) a stage with a lot of fluidity and a lot of identity development, and that all can be disrupted by a diagnosis, so the notion of quality of life for a young person affected by cancer has to incorporate that complexity.”

Love is a member of the scientific and medical advisory board for Stupid Cancer, co-founder of GRYT Health and associate professor of health communication in the Moody College of Communication at the University of Texas at Austin.

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AYAs with cancer communicating with care teams and palliative care specialists can be “more work for people who do not need more work,” Love said. However, logging and tracking symptoms over time can help this communication.

“Suggestions I would make, based on research, are to think about regular tracking of symptoms, experiences and thoughts, which might just be a log in a phone notes app. It might just be a daily commitment to open the notes app and say, ‘What was I physically feeling today? (How) was (I) emotionally feeling today? Where do I see an unmet need? What would help?’” Love noted.

“(I would) encourage people to be very kind to themselves as they’re going on the journey,” Love said. “I mean, that is the wisdom for quality of life, I think, to be very gracious with themselves and their thoughts and their experiences.”

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