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During this search for a breast cancer support system, my mother also investigated complementary therapies that peers had used to help cope with their fears, adverse effects, and feelings of helplessness.
When I was a teenager, I witnessed my mother struggle with breast cancer and the toll her treatment had on her physical and emotional well-being. I was also a casualty of that war and still bear many scars decades after her death. The one saving grace we both had during those harrowing years was my mother’s drive to find a support system comprising other people facing cancer. During this search, my mother also investigated complementary therapies that peers had used to help cope with their fears, adverse effects, and feelings of helplessness.
At the time, many of these complementary therapies were not embraced by the medical community. In addition to the challenge of trying to locate and access these therapies, my mother had to learn through trial and error which modalities worked best for her and when. For example, although she derived important benefits from deep massage and yoga during earlier stages of disease, she turned less often to physical interventions such as visual imagery and art therapy as her cancer progressed.
Just as genetic testing and targeted therapies have enabled cancer providers to determine the best treatments for an individual’s tumor, my mother’s experience has taught me that psychosocial care needs to go beyond a “one-size-fits-all” approach and be tailored to each person.
At Montefiore Einstein Center for Cancer Care in the Bronx, New York, our renowned basic science and clinical research teams are advancing personalized cancer care by developing tools to better predict the likely course of a person’s cancer to provide the right therapy at the right time to each person. Why can’t we use the same approach to address a patient’s psychosocial needs?
To chart a new path for comprehensive cancer care, Edward Chu, MD, MMS, our cancer center director, is leading scientific approaches such as community-based participatory research and using patient preference trials to study interventions that will best meet patient needs.
These approaches are the center of the “gold standard” in medical research—the randomized controlled trial—and include patient voices in determining which outcomes and interventions are most important to the community.
In our clinical trial design, patient advocates and community advisory boards are common components. Further, in our research, patients serve as guides in addressing racial and ethnic disparities as well as ensuring our suite of therapeutic approaches are culturally appropriate.
Since 2007, my team has evaluated the preferences of more than 2500 patients with cancer to identify which psychosocial modalities our patients find most helpful. Therapies range from individual counseling, support groups, spiritual support, mind-body therapies, and conversations with cancer survivors.
Collecting patient information and preferences is extremely important, particularly in our Bronx community, which is home to one of the most economically disadvantaged counties in the country. It is also the least healthy county in New York State.
By identifying the services our participants say they need, we can provide these essentials. We can also remove the barriers that interfere with their ability to access medical care and mental health services and adhere to their treatment.
A community-based participatory model was leveraged to launch our psycho-oncology research program from the point of greatest interest to our Bronx cancer community— mind-body interventions. With scientific rigor and cultural competency, our early work started with a National Cancer Institute–funded randomized controlled trial1 comparing a group yoga intervention with a wait list control group to examine the effect of yoga on quality of life among English- and Spanish-speaking patients with breast cancer. Our findings indicated that yoga had a significant impact on our patients’ social well-being.
We then conducted a patient preference trial2 in which we queried underserved patients with cancer about their choice of a spiritually oriented support group vs a psychoeducational support group. Then, we randomized these individuals during an initial 12-week intervention phase. Following the trial, we gave participants the option to enroll in their preferred group. Not surprisingly, we found greater engagement and satisfaction among those who had received their support group of preference.
In a pilot trial3 of a 20-week group meditation program with underserved, primarily minority patients with breast cancer, participants reported significant improvement in overall quality of life with particular benefits to social well-being, as mirrored in our earlier yoga study.
As we continue to innovate in the area of mind-body research, our psycho-oncology team recently published the findings of a pilot study4 of loving kindness meditation delivered through peer navigators. These are volunteers who are survivors of cancer or professional meditation teachers.
Results showed that patients were as satisf ied with peer navigators as they were with the professional meditation teachers. Additionally, they experienced similar benefits in emotional well-being, with a 15% increase in positive moods and 9% decrease in negative moods, as well as a significant increase in relaxation response. Moreover, 100% of the volunteers reported feeling comfortable incorporating this new mind-body intervention into their role as peer navigators.
In addition to meditation’s positive impact on quality of life, the study results demonstrate that this may be a novel approach to patient empowerment, particularly among disenfranchised populations. All peer navigators and 85% of the patients were from low-income, ethnic minority groups and both were faced with the stresses of a diagnosis of cancer. The bilateral effects of this peer-delivered intervention offer an important example of moving from improvement to empowerment in the experience of cancer survivorship. After participating in learning and delivering loving kindness meditation, our cancer survivor volunteers reported feeling “at peace,” “useful,” “calm,” “good/great,” and “present.” One volunteer shared, “This is an awesome technique that can heal the patient and leader.”
Looking ahead, we are aiming to advance our research of targeted patient care through a randomized patient-preference trial. The trial will incorporate patients’ choice of mind-body modality with peer navigator and professional delivery and expand the evaluation of the intervention beyond psychosocial outcomes to include medical adherence and engagement. We will also investigate healing energy modalities, such as Reiki, during medical procedures. In addition, we will be enlisting medical students to act as patient navigators so these future clinicians can appreciate the challenges of navigating cancer care decisions for patients and their families.
With the impact of COVID-19, our ongoing psychosocial needs assessment initiative continues to point us in the direction of our patients’ priorities. In particular, it has highlighted the great isolation and anxiety that patients with a new diagnosis of cancer face during the pandemic. In response, studies on virtual peer navigation are underway.
In the end, the goal of targeted patient care may best be described as the attempt to create the optimal healing environment. That is one in which “patients and families come to health care providers with hopes, expectations, and beliefs [and] healing intention can be manifest in care through holistic assessment…and incorporating those hopes into the plan of care.”5