Helping Patients to Feel Informed About Goals and Adverse Effects of Cancer Treatments
Alex Sieg, MD
Laurie Lyckholm, MD
How confident should oncologists be that their patients feel adequately informed about the adverse effects of their cancer treatment? A recent study by Shaverdian et al,1 reported in the Journal of Oncology Practice and reviewed in this issue of The ASCO Post, found that 18% of 403 patients felt inadequately informed about the adverse effects of radiation therapy. Additionally, 37% experienced adverse radiation effects they wished they had known more about. When asked about chemotherapy and surgery, similar proportions of patients also wished they had been more informed about te adverse effects of those treatments.
Barriers to Effective Physician-Patient Communication
Counseling patients on treatment side effects and toxicity is a foundational responsibility of cancer care providers. The highly technical modalities utilized by radiation, medical, and surgical oncologists provide a unique barrier to effective communication. Further compounding the scientific complexity, treatment discussions between oncology providers and their patients often occur at a time of profound emotional and personal psychological upheaval. For instance, Gabrijel et al2 found that although 90% of patients remembered information about a new lung cancer diagnosis, just 49% were able to relate the goal of treatment. Despite these inherent challenges, the findings of Shaverdian et al provide reassurance that many patients process the majority of this complex information. However, the finding that one in three patients experienced treatment side effects they wish they had known more about suggests ample room for improvement.
Although time constraints inherent in modern medical practice are often cited as impediments to communication of important medical information, other factors play a significant role (ie, diverse informational sources, low health literacy, and the amount and technical nature of information provided during clinic visits). Shaveridan et al found that a significant number of patients obtained information regarding treatment decisions either from the Internet (50%) or family members (33%). When accurate, this information can undoubtedly aid the clinician-patient interaction. Unfortunately, information from these resources is often incomplete or anectdotal.
Additionally, the sheer volume of information discussed in clinical encounters provides a significant obstacle to communication. In a study describing the ability of patients with advanced cancer to give informed consent for phase I trials, Hlubocky et al3 found that just 45% of patients could recount the purpose of the trial. In a similar study, Jansen et al4 found that older patients recalled just 23% of the side effects discussed during an encounter. Together, these findings suggest cognitive overload, which when coupled with the emotionally charged diagnosis of cancer puts our patients at increased risk of missing critical information.
Disseminating Accurate Information: A Path Toward Improvement
Despite these challenges, the authors’ findings regarding patient preferences, as well as our understanding of adult learning, offer a path toward improvement. In their survey, the authors found that more than half of patients reported discussing treatment options with their primary care provider. Further, 90% of these patients judged the opinion of their primary physician to be important in their decision-making process. Given the central role of primary care physicians, they are well poised to aid specialists in disseminating accurate information provided by oncologists. Although collaboration with primary care physicians may prove beneficial in many cases, oncologists must still strive to identify ways in which to improve our one-on-one encounters with patients.
Counseling patients on treatment side effects and toxicity is a foundational responsibility of cancer care providers.— ALEX SIEG, MD, AND LAURIE LYCKHOLM, MD
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Although there are different learning styles,5 it would not be feasible to identify one for each patient, so the use of multimodal communication methods during clinic visits could improve patient recall and comprehension. For example, clinicians are often trained in teach-back strategies6 and should also use diagrams and images when possible. Counseling should include family and friends, if possible, to provide “extra ears.”
Similarly, clinicians should encourage patients to use their cell phones to record treatment conversations, so they can listen to them later. Patients should be provided with websites and materials that are not only appropriate to their level of literacy, but also their native language.7 Translators should be employed when necessary. Finally, patients should be allowed plenty of time to review the materials, ask questions, and be provided the name and contact information of someone to respond to further concerns.
Caring for patients with cancer is a unique privilege, but one with obstacles to ensuring effective patient-clinician communication. In the short time allotted for clinical encounters, providers must synthesize large quanities of highly technical information and deliver it in an understandable way to their patients. When one considers this information must be shared at a time of heightened emotion and distraction, gaps in communication are not surprising. Shaverdian et al have laid the groundwork for our ongoing pursuit of optimal discussions of treatment side effects and toxicities.
DISCLOSURE: Drs. Sieg and Lyckholm reported no conflicts of interests.
1. Shaverdian N, Yeboa DN, Gardner L, et al: Nationwide survey of patients’ perspectives regarding their radiation and multidisciplinary cancer treatment experiences. J Oncol Pract 15:e1010-e1017, 2019.
2. Gabrijel S, Grize L, Helfenstein E, et al: Receiving the diagnosis of lung cancer: Patient recall of information and satisfaction with physician communication. J Clin Oncol 26:297-302, 2008.
3. Hlubocky FJ, Sachs GA, Larson ER, et al: Do patients with advanced cancer have the ability to make informed decisions for participation in phase I clinical trials? J Clin Oncol 36:2483-2491, 2018.
4. Jansen J, van Weert J, van der Meulen N, et al: Recall in older cancer patients: Measuring memory for medical information. Gerontologist 48:149-157, 2008.
5. Villejo L, Meyers C: Brain function, learning styles, and cancer patient education. Semin Oncol Nurs 7:97-104, 1991.
6. Ha Dinh TT, Bonner A, Clark R, et al: The effectiveness of the teach-back method on adherence and self-management in health education for people with chronic disease: A systematic review. JBI Database System Rev Implement Rep 14:210-247, 2016.
7. Matsuyama RK, Lyckholm LJ, Molisani A, et al: The value of an educational video before consultation with a radiation oncologist. J Cancer Educ 28:306-313, 2013.
Drs. Sieg and Lyckholm both work at the Holden Comprehensive Cancer Center, University of Iowa Carver College of Medicine.