What patients’ feelings can tell you about quality
New standard focuses on subjective information
You can get hard numbers about things like infection rates and whether a heart attack patient gets aspirin within a specified time period in the emergency department. But can how a patient feels tell you anything important about quality? And can you put a number on something as fuzzy as a feeling? The answer to both questions is yes, and the National Quality Forum (NQF) and National Committee for Quality Assurance are developing standards that will put the patient voice forward in quality assessment. Initial efforts were published this summer.1
The rationale for making patient-reported outcomes (PROs) a priority is that when a patient feels better, health care use (and thus cost) declines, the article notes. The information can also be helpful to providers in creating treatment plans that work toward goals that the patient has — such as being able to perform certain activities of daily living rather than simply completing some course of treatment or having an injury appear healed on an X-ray.
In the article, the authors describe a pathway for developing PRO measures that the NQF developed with a wide range of stakeholders. (A report on the pathway can be viewed at www.qualityforum.org/WorkArea/linkit.aspx?LinkIdentifier=id&ItemID=73012 and includes links to work material related to the kinds of information organizations will want to look at and how they can be measured.)
Among the items considered to be PROs are health-related quality of life, functional status, symptoms and symptom burden, health behaviors, and patient experience.
But many people will still ask: How can you be sure that what a patient tells you is true? "I don’t think you can look at this as an either/or’ situation," says Karen Adams, PhD, MT, vice president of national priorities at NQF. "The traditional ways we measure quality still apply, but it’s important to have the input of the patient, too," she says. "How do you think your care was coordinated? What is your functional status? Are you reaching the goals you hope to reach? I see those questions as a compliment to what we are already doing. Without the feedback from the patient, how do we really know we are providing the best patient care?"
"When I think about any measurement, you have to make sure you go to the right source for the information," says co-author Ethan Basch, MD, MSc, director of the cancer outcomes research program at the University of North Carolina Lineberger Comprehensive Cancer Center at North Carolina Cancer Hospital in Chapel Hill. "A physician can’t understand your nausea and report how you are feeling. In other areas, we doctors are in the best position to report on things, but not all, and there is good data on that." Indeed, Basch says that when clinicians do report on subjective patient information — how they think the patient is doing, for instance — data shows they are often far from correct.
In the past, it was hard to systematically go after this kind of information, Basch says. "But recently, not only has the science of developing and testing questions advanced, but because of interfaces available, it is more feasible to gather it."
The chorus of groans at the thought of more data to gather will be heard throughout hospitals, but he says that if you are committed to providing patient-centered care, this is something intuitive and worth doing.
"The other piece of this is that when we do performance evaluations, we haven’t collected information on these particular areas," Basch says. "We have focused on other dimensions of care. Part of our awakening to patient-centeredness is that a vital part of understanding true quality care is asking patients about their lives. If my treatment recommendations aren’t positively impacting patient lives, or I don’t understand how they are impacting patient lives, then I have an incomplete understanding of how I’m doing."
Beyond how a patient feels, even something that seems as objective as functional status is better reported from the patient, he continues. "Clinicians are subject to bias there, too," he says. "If one of my patients is fatigued, but not as fatigued as another patient, then I might report that the first patient is doing fine."
He acknowledges that all measurements have problems and variability, but the science of developing questionnaires is advancing. "We have been doing this for decades, and people are pretty honest on paper, where face to face they might not be," he says. "The results taken in aggregate, across the population, provide a true picture."
Adams says the science around PRO tools is "very robust. Some have been around for 30 years, have tested in multiple languages, and over ranges of health literacy. These tools can look for consistencies." Likewise the science of creating questions that get to the true heart of the matter for patients is advanced. Not that these reported outcomes alone will give a whole picture. Rather, Adams says that patient perception of how they are doing must be combined with other indicators. Take the example of a physical therapist who will note that a patient has a certain range of motion, how much he or she has improved, and what the expectation of healing is. Maybe that patient is as far along in recovery as possible, and the therapist calls it a success. "But if you can’t get up from your chair and make dinner, that isn’t a success to you. We need to know that. We have to get this kind of information into routine practice."
Patients are happy to share this kind of information. Further, Basch says that they want to see how the information they give you is used. "They say things like, I never thought you’d ask,’" he says, and they want to see how other people like them have responded to the same questions.
The biggest issues, says Basch, is how to get information from hard-to-reach patients and ensure robust response rates. "You will have to make sure you don’t inadvertently exclude certain patient groups, like those who speak different languages, with low health literacy, or patients with imperfect access."
This may be an additional burden, Adams says, but if you get good outcomes measures, the potential is a reduction in some of the process measures related to that outcome. "Those process measures can be useful for internal improvement," but you won’t have to collect them for regulatory bodies any more.
There are skeptics, Adams says, who don’t believe that the patient can be the authority of useful information. "But we believe that the patient is the authoritative source for some things. How they experience care, how they feel, how something rates — they are the right source and you should go to them."
As this moves forward, she says to have an openness "and receptivity to collecting this information in a way that becomes part of your flow, and that brings it back to the patient so they also learn and benefit from it."
Basch agrees: "Patients have information that is unique, that we can’t get other ways, that is vital to understanding the impact and value of treatment. Collecting this information is feasible, and there is a science to it. Be rigorous and thoughtful and don’t just jump in."
For more information on this topic, contact:
- Ethan Basch, MD, MSc, Director, Cancer Outcomes Research Program, School of Medicine and School of Public Health, University of North Carolina, Chapel Hill, NC. Email: [email protected]
- Karen Adams, Ph.D., MT, Vice President, National Priorities, National Quality Forum, Washington, DC. Telephone: (202) 783-1300.
1. Basch E, Torda P, Adams K. Standards for patient-reported outcome-based performance measures. JAMA. 2013;310(2):139-140.