Dr. Antonio Wolff, M.D., recently talked with Susan G. Komen about the importance of including loved ones in patients’ care. Wolff, a Komen Scholar, led a clinical trial that focused on the involvement of family members, care takers, and loved ones in a breast cancer patient’s treatment and outcomes. Here are some of his findings.
Wolff is a Professor of Oncology at Johns Hopkins University and a member of the Johns Hopkins Kimmel Cancer Center.
Komen: Can you tell us more about who you wanted to participate in your clinical trial?
Wolff: It’s amazing for us to recognize the importance of the family caregiver, friend, or spouse who is coming to all of the appointments, helping to schedule appointments, taking time off away from their own lives, work, and personal responsibilities to help their loved one. The medical community has not done the best job possible to engage those individuals, to have them truly involved in partnering with us, in helping care for that individual affected by cancer.
Komen: How was the clinical trial conducted?
Wolff: It was a randomized study that asked patients and families to participate in an intervention that had two basic features. For the first group of participants, we asked if we could provide some educational materials, but we didn’t try to actively engage them in the patient’s care. For the second group, we further educated the patient and their caregiver on the ability to provide the caregiver with access to the patient’s health records, notes in their medical records, and to be part of the team assisting with the patient’s care. For that group, we also used a simple checklist that the patient and their caregiver could fill out before speaking with the physician. The checklist asked some simple questions about what they were expecting for that visit, their goals for that day and their goals for the near future. The checklist helped patients and caregivers synchronize their questions and concerns to make sure they left the appointment with all their immediate concerns addressed. By doing this, we are helping the patient and their caregiver work more effectively as a team.
Komen: What have you learned from the trial?
Wolff: What we learned right away is that this clinical trial was incredibly well received. We saw an uptake in registration for access to the electronic health records. We completed follow-ups at 9 and 12 months, and we are in the process of analyzing the data. My expectation, my hope, is that patients and their caregivers are going to have less anxiety, greater self-fulfillment, greater self-efficacy, and that they feel engaged and have a better sense of control.
Komen: How do you see the results from this study changing patient care?
Wolff: If we have both the patient and their caregiver more engaged, number 1, they are going to be better advocates for themselves, and number 2, they are going to do a better job in follow-up recommendations and letting us know when things are not going well. If we are planning, in this case, treatment interventions for patients with early-stage breast cancer, or patients with advanced disease, it could increase their chances of living well and surviving their cancer diagnosis.
Komen: And what changes could the results of this trial have for physicians?
Wolff: We are going to implement treatment recommendations knowing they are more likely to be followed. And if there are problems that are preventing patients from receiving appropriate treatment, then we’re going to pick up on that very early. It’s almost like we’ll be closing the loop on high-level clinical research. After decades of preclinical research, laboratory research, going to the clinic, developing new treatments, we’re now finally translating all of that into the ability to deliver the right treatment, for the right patient, and making sure the family and caregivers are involved. That’s our ultimate goal: to reduce mortality, improve survival, and improve the quality of life for patients diagnosed with cancer.
