This article is more than 5 years old. Information may no longer be current.
Transparent conversations needed across cancer continuum to improve patients’ illness understanding
Click Here to Manage Email Alerts
More than one-quarter of patients with advanced cancer exhibited poor understanding of their illness and could not answer basic questions about their disease, according to study results published in Journal of Oncology Practice.
“An even greater number of patients with early stage I to III cancer have poor illness understanding,” Shanthi Sivendran, MD, oncologist at Penn Medicine at Lancaster General Health, and colleagues wrote. “These observations highlight the need to improve illness understanding for patients across the entire cancer continuum.”
Sivendran and colleagues sought to evaluate illness understanding — based upon accurate reporting of stage at diagnosis and knowledge of disease status — among 208 patients treated at a large, community-based cancer institute.
Researchers used electronic health records to pool data on stage at diagnosis and cancer status. They then compared the data with patients’ self-reported responses.
Results showed self-reported cancer stage matched the abstracted stage for 51% of patients.
Researchers reported a higher level of concordance among patients with advanced cancer (72%) than those with stage I to stage III disease (36.4% to 61.5%).
Nearly 30% of patients were unsure of their cancer status, even when they were free of cancer or in remission.
HemOnc Today spoke with Sivendran about the study, the potential implications of the results, and how members of the care team can help improve their patients’ disease understanding.
Question: How did this study come about?
Answer: Our team is expanding the palliative care services we have at our cancer research institute, and we wanted to get a baseline understanding of our patients’ understanding of their illnesses. A lot of studies that assess illness understanding and prognostication are performed at large academic centers. We are a community-based cancer center, so we wanted to see if what the national data show is reflected in our population so — if necessary — we could devise interventions to improve.
Q: How did you conduct this study?
A: We looked at 208 patients with cancer who had been treated at our institution during the previous 12 months. All patients had previously participated in a survey-based study that we did in conjunction with Mayo Clinic and American Institute of Research. As part of this survey, participants had to answer two questions related to illness understanding. One question asked if they knew their stage of cancer at diagnosis. The other question asked if, at the time of the survey, they knew if they were free of cancer or if they knew that their cancer was in remission. My team then retrospectively went back to patients’ charts and gathered physician-documented understanding of those answers. Investigators then evaluated concordance of responses and any variables that influenced discordance.
Q: What did you find?
A: About half of the patients could not accurately define their stage at diagnosis. These patients tended to be male, aged older than 65 years, and have lower income and less education. We also found 35% of our population was unsure if they were cancer free or in remission.
Q: Did the findings surprise you?
A: Patients with curable cancers appeared most at risk for poor illness understanding. Most of the research of illness understanding in the literature has focused on patients with advanced cancers, so that was surprising. Additionally, about 30% of patients with curable cancers were unsure of the status of their cancer, even if they were free of their cancer or in remission.
Q: What are the clinical implications of the se findings?
A: Our findings confirm that there is limited illness understanding in our population of patients, and this is reflective of the national conversation. Also, prior studies showed poor illness understanding may prevent patients from choosing guideline-concordant care. This is obviously a concern, as some patients may choose inappropriate therapies. Additionally, it has been shown in the literature that patients with poor illness understanding may choose more aggressive care or care that is not concordant with their wishes in the end-of-life setting.
Q: What still must be explored in future research?
A: Our research shows there is an opportunity to really delve into illness understanding in the curable setting and more studies about whether that affects their clinical care.
Q: How should members of the care community go about improving patients’ illness understanding?
A: There are several different things we can do. From illness onset, we must have transparent conversations with the patient and their caregivers about their illness, prognosis and what to expect with treatment. It is important that we assess the patients’ wishes so we can make sure any treatment we are giving is really what the patient wants. In the era of newer targeted therapies, it is important that we have these illness-understanding conversations throughout the course of the illness. There often are decision points during the course of the illness — such as scans, labs and changes in performance status — that really lend themselves to having these conversations. We know the information we provide patients during this time can be overwhelming for them, so repeating these conversations throughout the trajectory of the disease is important for illness understanding.
Q: Is there anything else that you would like to mention ?
A : Communication is a skill that can be developed. When new therapies come out, we take the time to learn about the medication. We should equally work toward learning and improving the art of communication. This is key for all members of the care team so that we can effectively convey information accurately and compassionately. – by Jennifer Southall
Reference:
Sivendran S, et al. J Oncol Prac. 2017;doi:10.1200/JOP.2017.020982.
For more information:
Shanthi Sivendran, MD, can be reached at Penn Medicine at Lancaster General Health, Ann B. Barshinger Cancer Institute, 2102 Harrisburg Pike, Lancaster, PA 17601; email: ssivendran2@lghealth.org.
Disclosure: Sivendran reports no relevant financial disclosures.