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Learning About Oncologist—Patient Communications by Speaking Directly With Each

Daniel Weber, MPM, and Shelley Fuld Nasso, MPP
The importance of doctor-patient communication is well established. Focus groups conducted with patients and oncologists help unravel why gaps exists and how to customize strategies for improvement.
The importance of doctor–patient communication in general clinical settings is well established. “Effective doctor–patient communication is a central clinical function in building a therapeutic doctor–patient relationship, which is the heart and art of medicine.”1 The impact of this communication goes even further. “Research has shown that effective patient–physician communication can improve a patient’s health as quantifiably as many drugs—perhaps providing a partial explanation for the powerful placebo effect seen in clinical trials.”2 With the high levels of psychological stress, uncertainty, fear, and sense of helplessness associated with a cancer diagnosis, the National Coalition for Cancer Survivorship (NCCS) sought to learn more about this critical interaction specifically from cancer patients and oncologists.
Three decades ago, a cancer experience was viewed differently than it is today. Someone diagnosed with the disease was simply and helplessly referred to as a “cancer victim” and was often treated accordingly. However, for a small group of individuals, many of whom had experienced a cancer journey themselves, the status quo was no longer acceptable. In 1986, this group— including recognized experts on employment and disability law, healthcare consumerism, and psychosocial and behavior­al research—came together to create NCCS. The organization changed the culture in oncology, replacing “cancer victim” with “cancer survivor” and creating the concept of “survivorship.” NCCS defined someone as a “survivor” from the time of diagno­sis and for the balance of life, which is now the norm for the en­tire cancer community, including the National Cancer Institute.
Today, there are an estimated 15.5 million cancer survivors, with projections that nearly 1.7 million additional persons will be di­agnosed with cancer this year alone.3 By 2026, it is estimated that there will be 20.3 million cancer survivors in the United States.3 Add to these figures the caregivers, family members, and friends of a cancer patient, and the number of individuals impacted by cancer is staggering—it affords relevance to the substantial investments in cancer research, primarily focused on treatments. However, with evidence indicating the importance of survi­vorship issues, including quality of life (QOL) during and after cancer treatment, it is critical that more effort and resources be devoted to improving doctor–patient communication, and en­suring shared decision making, so that treatment choices reflect the patient’s goals and values.
NCCS-Initiated Focus Groups
One of the goals at NCCS is ensuring a shared decision-making process between patient and provider that includes a discussion of the specific diagnosis, prognosis, goals of care, treatment op­tions (including the benefits and risks of each option), QOL, and patient preferences. To enhance our understanding of stakehold­er perspectives on these issues and to identify the most effective approaches to improve communication and adoption of shared decision making, NCCS collaborated with Edge Research to con­duct patient–oncologist focus groups. The scope of this research was qualitative in nature, intended to be descriptive rather than predictive. As such, statements and observations made regarding “patients” and “oncologists” in this paper refer only to those who took part in this study.
The research objectives included the following:
• Understand the attitudes, values, beliefs, and behaviors of cancer patients and providers regarding communication about diagnosis, treatment options, and goals.
• Understand the challenges of cancer care planning, including discussions on QOL, side effects, access/cost, and the impact of delivery location.
• Gather recommendations for what would improve pa­tients-provider communication (eg, tools, practice struc­tures, etc).
The oncologists participated in an in-person focus group with 9 participants of different ages and from different practice settings, including cancer centers, academic health centers, community hospitals, and private practice (Figure 1). Each participant works with large populations of Medicare patients.
The patients were split into 2 groups. The first was an in-person group of 8 participants, aged 65 to 75 years, representing a mix of socioeconomic backgrounds; they were primarily cancer survivors who had completed treatment and had been diagnosed within the past 3 years. The second group took part in a series of 8 in-depth interviews conducted virtually—5 with individual patients and 3 dyads with a patient and their caregiver. These patients had advanced cancers with poor prognosis. All focus groups and interviews were conducted in January and February of 2016.
Patient Mindset
The conversations revealed a range of patient mindsets about the oncologist–patient relationship, falling on a spectrum from little patient involvement to a take-charge approach (Figure 2).
Treatable and early-stage patients fell predominately under the “decision maker” mindset and are an extension of the “doctor knows best” mentality. They want their doctor to steer the ship, but it’s also important for them to feel like they have choices for their treatment options. Patients with advanced cancer and a poorer prognosis, however, had a wider spectrum of mindsets, whether based on personality (the take-charge patient) or on circumstance (the reluctant decision maker who is forced to assume a greater role in their care). To complicate this dynamic further, patients may shift from one mindset to another during their journey due to a variety of factors, including poor treatment and care, recurrence of disease, and fear of death. These mind­sets, and how patients relate to the oncologist–patient relation­ship, must be considered when developing and implementing strategies for improvement.

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