A new angle on ‘patient experience’ in oncology: The challenge of patient-reported outcomes

“Listen to your patient, he is telling you the diagnosis.”
— Sir William Osler

When most of us involved in cancer care think of “patient experience,” we think of access to care, clinic wait times, satisfaction with providers and how we can improve these metrics (and improve our satisfaction scores).
There is a tendency to think of patient experience as episodic, based around time our patients spend directly interacting with their care providers and with the facility where they receive care.

So, I was intrigued recently when I came across a document produced by the Cancer Support Community, titled Elevating the Patient Voice: Cancer Experience Registry Index Report, 2013-2014.

Based on the title, I assumed this was Press Ganey on steroids. I was expecting this to comprise comparison tables of scores for patient experience across the United States and maybe identify best practices. A couple pages in, however, it was clear this was something quite different.

As I read through the report, I was reminded of the quote from Sir William Osler at the top of this editorial. Although the context is different, the message is the same: If we want to understand our shortcomings as care providers and communicators to our patients, we need to listen to what they are telling us.

This report may not contain any new messages, but the information is packaged and presented in an objective format and highlights some key areas where we don’t appear to understand and/or meet the needs of those affected by cancer.

Disheartening findings

I am embarrassed to admit I had not heard of the Cancer Support Community before I saw this report, and apart from the description within the report, I don’t know much about the organization. The data contained within the report are, as far as I can tell, primarily derived from validated questionnaires, applied in an online format, and the process of finding and completing the questionnaire is dependent upon the patient.

Patients learn about this organization through a variety of methods, including social media, patient advocacy groups and cancer conferences. The data contained in this report, therefore, most likely are from a selected patient population. Only limited demographic data are contained in the report, and it is difficult to assess the degree of bias this may introduce.

A high proportion of those completing the survey have a college degree or higher, which certainly suggests that the surveyed population is skewed, but this does not invalidate many of the take-home messages. If anything, this demographic may underestimate some of the challenges and issues facing our patients, particularly as they relate to financial hardships.

Besides the general registry for patients with all cancer types, data are presented from disease-specific registries for breast cancer, multiple myeloma and chronic myeloid leukemia. Changes in treatment have transformed the outcome for patients with all these diseases in recent years. Although advances in these diseases have been remarkable, they have created new problems and concerns for an increasing number of surviving patients. The survey suggests that we do a poor job of identifying these problems and an even poorer job of intervening.

The details of this report make interesting and sometimes disheartening reading.

Among the top concerns, some are expected. They include concerns about the future and survival, the financial burden of cancer and its treatment, the impact on family and friends, and disruptions to home, work and social life. I was surprised to see issues such as exercise and physical activity, as well as nutrition, listed in the top 10.

The take-home messages from the report highlight perceived shortcomings in our abilities to address many concerns of major importance to our patients. Apparently, a major reason for our failure to address these concerns is that we don’t ask!

Distress screening is a good example. Only 58% of patients seen at an academic medical center reported that they had distress screening — pretty disappointing, considering this is now a Commission on Cancer metric. For those patients treated at facilities other than academic centers, the number is even worse (45%). Not surprisingly, information about clinical trials does not seem to be communicated widely or well, and many patients still do not feel they are being adequately engaged in treatment decision-making.

Some of the disease-specific information is especially interesting. For example, some patients with CML on long-term oral treatments such as imatinib (Gleevec, Novartis) are deciding to take treatment holidays to avoid some side effects of treatment, especially around family, work or social events. They are doing this without their physicians’ knowledge. Some patients rationalize this decision on the basis that, because clinical trials are exploring the possibility of discontinuing treatment with these drugs, it must be OK. Nevertheless, the patients carry a certain burden of guilt for doing this without informing their physicians, and they have anxieties about relapse and possible development of drug resistance.

Patients with metastatic breast cancer report that they feel that many of their challenges are underestimated because their outward physical appearance is healthy. For many long-term survivors — whether on or off therapy — late or sustained treatment side effects have major impacts. Providers are not asking about them, and the survivors are not reporting them to us.

‘Tremendous opportunity’

For me, the impact of this report is not so much the specific content, although that is important and should make us all take note. More significantly, it provides us with a glimpse into our future as cancer care providers. It touches on many of the hot-button issues in oncology care delivery: survivorship and wellness, patient experience, patient-reported outcomes and comparative-effectiveness research, patient advocacy and the “financial toxicity” of cancer care.

Addressing all of these emerging trends in cancer care is, at times, daunting. At our center, like many others, we are working hard to meet our patients’ needs and expectations in these areas. Our disease-based teams are developing survivorship care plans, and they are at various stages of maturity. We are exploring new care delivery models that will allow us to provide care for the increasing number of cancer survivors in the face of the looming shortage of oncologists. We are working on research programs investigating the role of diet and exercise in specific cancers. We are exploring new technologies for collecting and recording patient-reported outcomes. The list goes on.

This report shows that, although these efforts are a step in the right direction, they will not be enough. The registry currently contains data from about 7,000 patients, a tiny proportion of those affected by cancer in the United States. We can expect an exponential increase in the amount of patient-reported data as electronic health records and new research projects include this information. Modalities for collecting and recording patient-reported outcomes are increasing and undoubtedly will form a large component of many of the “big data” projects that already are in progress.

As we seek to obtain more patient-reported data at a population level, we need to be aware that — at an individual level — patients who are asked to report their own outcomes have a right to expect that we will listen, acknowledge and act upon their concerns. Depending upon your point of view, this could be regarded as a can of worms or a tremendous opportunity to make the lives of our patients and survivors better.

Either way, this is a trend in cancer care that will continue, and we must find the tools and strategies to provide an increasing spectrum of services.

So what do we need to do to meet this challenge? There is, of course, no simple fix.

Empowering our patients by giving them a voice in our cancer centers seems to be an important first step. Patient advocacy groups or patient advisory boards could have a huge impact on our understanding of their needs and our shortcomings. Incorporating such groups into the governance structure of our centers, which many have already done very successfully, will help us to develop the most effective services.

Prioritizing research into the effects of diet and exercise on cancer outcomes will help us to provide meaningful and evidence-based advice on a subject that is a major concern for individuals undergoing cancer treatment as well as survivors. Ensuring that all of our patients have access to financial counseling, as well as psychosocial assessment and support, are “fixes” that already should be in place in most centers but may need to be deployed more effectively.

Developing new strategies to make sure that our patients report all their concerns to us is key. It is highly unlikely that this can happen in a regular clinic visit, but new software, apps and mobile devices provide us with opportunities to obtain this information from our patients on their terms, in environments in which they feel comfortable and possibly more likely to share their concerns.

The Cancer Support Community should be congratulated on its efforts to make our patients’ voices heard. We already have a fairly clear idea of the diagnosis — a shortfall in our appreciation and understanding of patients’ and survivors’ short-term and long-term needs. Now, we need to get to work on the remedy.

Reference:

Cancer Support Community. Elevating the Patient Voice: Cancer Experience Registry Index Report, 2013-2014. Available at: www.cancersupportcommunity.org/mainmenu/researchtraining/elevating-the-patient-voice.pdf. Accessed on Nov. 10, 2014.

For more information:

John Sweetenham, MD, is HemOnc Today’s Chief Medical Editor, Hematology. He also is senior director of clinical affairs and executive medical director at Huntsman Cancer Institute at the University of Utah. He can be reached at john.sweetenham@hci.utah.edu.

Disclosure: Sweetenham reports no relevant financial disclosures.