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A significant proportion of oncology patients and caregivers feel they are not getting the information they want from their cancer care team, and nearly 1 in 4 are dissatisfied with the care provided during their treatment journey
Maurie Markman, MD
A significant proportion of oncology patients and caregivers feel they are not getting the information they want from their cancer care team, and nearly 1 in 4 are dissatisfied with the care provided during their treatment journey, according to a new survey.
And, more than one-third of the patients who responded to the survey either did not understand or had never heard of the widely used terms “genomic testing” and “survivorship program,” the study found.
Such gaps in communication are among the most noteworthy findings of the survey, said Maurie Markman, MD, president of the Medicine & Science unit at Cancer Treatment Centers of America (CTCA), which commissioned the study. The Edelman Berland research firm conducted the survey independently.
“Oncologists can draw from this that, despite what is certainly their best efforts, we need to have a better understanding of how to optimize our communications with our patients,” said Markman, who is the editor in chief of OncologyLive magazine, in an interview. “We are surely trying to communicate but at times that communication does not lead to an understanding of the issues—at least that is the perception of a substantial percentage of patients.”
A connected patient experience is a critical benchmark for any healthcare organization in today's service-focused environment, noted Gerard van Grinsven, president and CEO of CTCA, said in a press release. "As healthcare leaders, we need to be more deeply focused on putting patients and their experience at the center of everything we do," said van Grinsven.
Markman said the survey goes beyond the research populations where strategies are often evaluated, “This is a very large view of a very heterogeneous population,” he said.
In all, 2116 people participated in the 15-minute online survey from March 5-28, 2014. The respondents were divided evenly among patients (n = 1058) and caregivers (n = 1058), and the survey had an overall margin of error of ± 2.13%.
To participate, patients had to be individuals aged 35 years or older who had received a stage I-IV cancer diagnosis within the past three years and had health insurance coverage. Caregivers had to be individuals at least 18 years old who would describe their responsibility for the patient as “full, most, or equal;” the person for whom they were caring also would have to meet the survey’s patient criteria.
The key findings of the survey indicate that there is a disconnect between criteria that patients and caregivers consider most important when choosing a treatment facility and the care they actually received.
The top three features respondents said they wanted were timely information (91%), the care team’s willingness to answer questions (90%), and a care team that fully involves patient and caregiver in decisions (87%). However, when asked whether their experiences measured up to these goals, only 79%, 74%, and 70%, respectively, said those criteria were reached.
In addition, the survey found disparities between services that patients and caregivers believe are important and their knowledge about what these offerings entail. For example, 54% of respondents ranked a survivorship program as important, but 35% either had no idea what it was or had never heard of it—and only 18% had every experienced a survivorship program during their treatment.
Similarly, 44% thought genomic testing was important, but 33% either had no idea what it was or had never heard of it. Likewise, the terms complimentary medicine (40%), precision cancer care (36%), and integrative cancer care (31%) were not well understood.
The study also concluded that there are gender and ethnicity differences that shape the experiences of patients and caregivers. Women were more likely than men to identify more components of care such as pain management, psychological counseling, and nutritional counseling as important, yet they were just as satisfied as male patients (75% vs 74%) with their overall experience.
In the area of ethnic distinctions, African American and Hispanic caregivers tend to be younger people who are taking care of their mothers and are more likely to have full caregiver responsibilities than their white counterparts. There also were differences in what the majority of patients in each group identified as their motivation to undergo cancer treatment: African American patients said faith and spirituality (79%); Hispanic patients said family responsibilities and support (84%); and white patients said a desire to live a healthy life and perform daily activities (74%).
Markman said more research is needed to determine how best to communicate complex topics in cancer care to patients and their caregivers. He said improving communications will be challenging for busy practitioners who do not have enough time to spend with individual patients now, and that strategies likely would involve other members of the treatment team.
“If that takes more time, we have to figure out how to do it,” said Markman. “At the end of the day, if they [patients and caregivers] didn’t feel they were getting the information they need, there’s a problem with communication."