For people living with serious illness, both patients and care providers, identifying the single biggest concern can be a difficult task. There are so many concerns – from “Who will help me if I am too weak to care for myself?” to “How can we treat my nausea and pain?” When interrupted by a serious illness, life often takes on many new challenges and can certainly create many new fears. In an effort to understand our patients’ most pressing concerns, we now ask them to tell us about their “single biggest concern.” This then becomes the focus of their visit with the palliative care team.
Over the last year, through a partnership between the palliative care specialty council and the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, a pilot study has been conceptualized, operationalized and nearly completed. The pilot consists of an iPad tool created to allow patients to choose one area of concern from a list as their single biggest concern. It then proceeds with additional questions in that area before asking them about their second biggest concern. The iPad is handed to patients upon check in, they complete questions while they wait, and the data is used to direct their visit with the palliative care team. The goal of the effort led by Drs. Tom Fitch, Ryan Uitti, Robert Shannon (@palliativedr)and Jeff Sloan has been to integrate patient-reported outcomes (PROs) consistently and efficiently into palliative care clinical practice with minimum burden to the patient, clinicians and affiliated systems; in order to improve clinical outcomes including patient well-being, quality of life, health literacy, and treatment outcomes.
This iPAD-delivered intervention at our pilot sites in Arizona and Florida enrolled 186 patients in the first quarter of 2015. We are nearing our first opportunity to initiate data evaluation, having only experienced minor technical glitches in the pilot. Even prior to our data evaluation, the pilot process has been a success – hallmarked by clinician, staff and patient acceptance and adaptation to the new process. One participating physician noted, “This tool uncovered a patient care issue I would not have known about or asked about. It made a difference.”
The pilot has left us to wonder how this new tool will impact patient referral and consultation. For example, currently, patients are often referred for a palliative care consult to talk about preventing crisis or responding to crisis in personal care in the face of progressing serious illness. If patients don’t select “care planning” as their single biggest or next-to-single biggest concern, we won’t meet the patient’s needs by addressing what was requested in the referral.
Perhaps a natural evolution of this tool will be to use it in various disciplines to identify palliative care needs that are important to the patient. Perhaps the severity of their situation at any given moment will influence how they answer the questions, and thereby help guide care decisions to determine who may best address their needs. As our work on this tool continues, we intend to incorporate initial lessons learned and seek improvements in the design and user-friendliness of the tool, perhaps incorporating an abbreviated version for repeat patients, alleviation of some technology issues, and exploration of possible alternate methods of dissemination. We believe that this patient reported outcomes tool may be adaptable for access through the patient portal, and could also be incorporated directly into the electronic medical record.
Stay tuned as our data will be the area of focus and review in the months ahead, and we look forward to sharing the results.
Dr. Cory Ingram is an Assistant Professor of Family Medicine and Palliative Medicine, Section of Palliative Medicine, and Director of Palliative Medicine within the Office of Population Health Management at Mayo Clinic in Rochester, Minnesota. You can follow him on Twitter at @cjingram.