A novel approach to helping teens and young adults cope with cancer is improving their mental health both during and after their treatment.
Adolescent and young adult (AYA) patients with cancer have a high risk of psychosocial distress, yet clinically proven methods of improving their well-being are lacking. To support their mental health, adolescent and young adult oncologist Abby Rosenberg, MD, MS, MA, developed an evidence-based coaching program called PRISM, which stands for Promoting Resilience in Stress Management.
The program consists of four 30- to 60-minute, one-on-one sessions targeting what Dr. Rosenberg refers to as “resilience resources.”
“We did years of work talking with adolescent and young adult patients throughout their cancer experience, and we asked them, ‘How are you handling the change and the stress and all of the different things that keep coming at you?’” says Dr. Rosenberg, who serves as chief of pediatric palliative care at the Dana-Farber Cancer Institute and director of palliative care at Boston Children’s Hospital.
In hundreds of hours of interviews, patients discussed the skills they were using to cope, which are often used in other adverse situations.
Resilience Resources
Working with their AYA patients, Dr. Rosenberg and her team identified four of these common skills – or resilience resources. These were stress management, goal setting, cognitive reframing and meaning making.
Stress management focuses on mindfulness, including deep breathing, relaxation and awareness of stressors. Goal setting involves identifying and achieving realistic and actionable goals, as well as preparing for roadblocks. Cognitive-reframing addresses negative self-talk and how people think about their experiences. And meaning making is finding gratitude. “It’s ways to try to find some silver lining or sense of purpose in the midst of really hard stuff,” Dr. Rosenberg says.
Dr. Rosenberg and her team then turned these four resilience resources into a curriculum that could be taught at the bedside or via video. Trained coaches follow a script that outlines the reason for the skill and practice each skill with the patient. The coaches are volunteers or graduate students who go through extensive training to become certified.
When the session is in person, patients are given worksheets to practice a particular resilience resource. If doing a gratitude exercise, for example, they write in a journal.
The curriculum has also been translated into a smart-phone app, enabling patients to practice and record their progress on their phone.
Research Based
In order to determine whether PRISM was achieving what Dr. Rosenberg and her team had observed with their AYA patients, they tested the program in a randomized clinical trial.
The study found that when PRISM was provided during cancer treatment, patients reported improved resilience, hope, and cancer-specific quality of life six months later, along with reduced psychological distress. Patients also showed a trend toward lower rates of depression. These improvements in well-being continued two years later. The results held true regardless of the patient’s race, gender or ethnicity.
Another study of parents of children with cancer found similarly improved resilience, indicating that PRISM may help parents cope and find meaning after their child is diagnosed with cancer or another serious illness.
Since these studies, PRISM has been tested in AYAs with advanced cancer and AYAs receiving bone marrow transplants, as well as in multiple trials involving other patient populations, such as adolescents with type 1 diabetes. Data from these trials are still being collected, and results are expected sometime next year.
Due to the lack of trained coaches around the country, PRISM has only been available to patients in research settings. One way to make the program more scalable, Dr. Rosenberg notes, would be to use the PRISM smart-phone app alone rather than as a companion to the personal interactions.
To see if patients would receive the same benefit from the app as the in-person coaching, Dr. Rosenberg and her team have launched a new study. The trial will recruit patients at 14 sites across the country and take about three years to complete enrollment.
“We need to determine who needs what kind of intervention – and when – for all of this to work,” Dr. Rosenberg says.
