- Patient engagement and patient education are severely lacking in cancer care, often leaving patients emotionally and physically distressed, says CancerCare’s 2016 Patient Access and Engagement Report.
The report includes a series of six surveys, each administered to nearly 3,000 cancer patients, which investigate patient understanding of the cancer diagnosis, treatment planning, communication with the healthcare team, financial and insurance issues, symptoms, side effects, quality of life, and the experience of survivorship.
The surveys found that while there are some protocols for supporting cancer patients, patient engagement, education, and satisfaction are generally lacking.
In the treatment planning survey, several patients reported a lack of education, with approximately one third of patients saying they did not receive adequate information about the benefits, side effects, and ideal outcomes of their particular treatment plans.
Another large majority reported that their care team did not adequately address concerns they had with their treatment, such as the ability to work during treatment, the emotional impact of their treatment, and the financial obligations of their care. Another survey found that only about one quarter of providers considered the financial implications of a certain treatment plan.
None the less, a vast majority of patients stated that they trusted their care team to choose the right treatment protocol for their conditions. Approximately 70 percent of those treated in community health centers trusted their care team’s treatment plan, while 86 percent of those in academic health centers reported the same.
There is also reported disconnect between patients and providers when it comes to treatment side effects and quality of life. While patients – especially women – reported side effects such as heightened anxiety, inability to stay physically active, and nausea, about 50 percent of them did not communicate the full scope of these concerns. Nearly 40 percent did not report side effects at all because they did not want to burden their providers.
Regardless, 94 percent of respondents stated that they were satisfied with the treatment team’s care coordination efforts, stating that they easily understood their treatment plans and were able to contact members of their care team outside of the healthcare facility.
And while few patients were referred to a counselor or other professional for help with anxiety or emotional support, many patients were able to identify a confidant. Most patients referred to their primary care physicians for several of their non-cancer care related concerns, like diet and exercise, sexuality, intimacy, work, emotional distress, and some end-of-life discussions.
Understanding some of these shortcomings on the part of cancer providers is an important step in developing an action plan to improve care delivery. According to the study’s authors, these results ultimately point to two conclusions: providers must better educate their patients about end-of-life care, and providers must support better care coordination.
With regard to end-of-life care discussions, the authors state that providers must introduce these conversations before it is too late. All too often, patients’ end-of-life preferences are taken into consideration too far into the treatment plan, and they do not receive the care that they may have chosen.
Likewise, a thorough understanding of patients’ end-of-life wishes helps establish trust between the patient and provider, and improves the entire treatment plan overall.
Providing excellent end-of-life care is essential to a doctor/patient partnership that is based on trust and respect and failing to help survivors plan for their transition to end-of-life care can result in increased psychological distress; medical treatments that are inconsistent with personal preferences; utilization of burdensome and expensive health-care resources that result in little therapeutic benefit; and more difficult bereavement for family members and loved ones.
Cancer care teams must also practice better care coordination. While a majority of patients did report satisfaction with the team’s care coordination efforts, the researchers explain that these teams can still do more to include patients’ primary care providers, which play an integral role in patient care.
As noted above, patients consulted with their primary care physicians on an array of concerns, including several aspects of their personal lives that may have been affected by cancer, but are not directly related to their treatments. Should the cancer treatment team coordinate better with the primary care physicians, they may have better insights into patient concerns and be more equipped to handle them.
“Our survey findings indicate [patients] also depend on their primary care providers for information about many of their cancer-related concerns,” the researchers say.
“Therefore, we should recognize the importance of inclusion and coordination among patients’ broad team of health-care providers to ensure that survivors receive the services and attention they need and deserve throughout their lives.”
Overall, providers should use the information gleaned from this study to improve their care delivery for cancer patients. By identifying the care preferences for their patients, providers can ensure that these patients receive care that not only benefits them physically, but emotionally as well.
"This report, reflecting the input of thousands of patients, sheds light on the important issues affecting patients' lives during and beyond a cancer diagnosis,” says Patricia J. Goldsmith, CEO of CancerCare, in a public statement.
“CancerCare conducted this study to learn more about how patients experience life after a cancer diagnosis, in order to inform our program development and most accurately represent and address the needs of patients throughout their continuum of care and after clinical treatment is complete."