An interview with Jeannine Brant, PhD, APRN, AOCN®, FAAN
Before starting your study, what did other patient-reported outcomes (PROs) research show?
An integrative review by Xiao and colleagues revealed 36 studies between 1989 and 2011. The study authors reported that some patient symptoms are not easily observed, such as depression and anxiety, and when patients do report the symptoms clinicians have the propensity to underestimate the symptoms, specifically incidence, severity, and distress.
Additional literature showed barriers for PROs. Patients were selective in their reporting. Patients wanted to be “a good patient,” not wanting to take the focus away from their disease treatment. They also had a perception that nothing could be done to control the symptom, so reporting would not be fruitful. In some cases, patients simply felt embarrassed or felt the effects of the limited time available with the clinician. The clinician also contributed to the barriers of PROs. Gaps in knowledge and attitudes prevented reporting, and clinicians also felt the constraints of time, not wanting to open discussion in fear that it would consume the visit. A lack of systematic support also prevented clinicians from receiving PROs; specifically, a scarcity of psychometrically sound studies and tools contributed to a lack of consistent process. PROs were also not integrated into electronic healthcare records, minimizing their presence in the care process.
What was the purpose of your study?
We wanted to explore the usability and satisfaction of the supportive care planning technology Carevive Care Planning System, linking patientreported outcomes with evidence-based management recommendations.
Tell us about the care planning system.
The system records a number of factors, including disease and treatment-related data, family history, and a patient’s top three visit concerns. It also includes a distress thermometer, which asks patients to select a number from 1–10 that best describes how much distress they have been experiencing in the past week and the day of the visit. Patients are asked to report if they have experienced depression, fears, nervousness, and sadness. These PROs are coupled with additional feedback from the patient that includes nausea, tiredness, pain, appetite, and overall well-being. The data collected creates an electronic record—in this case, a line graph—that tracks the PROs over time.
What were the study methods?
This was a prospective pilot study. Patients—mostly Caucasian patients, all women, with a median age of roughly 59 years—with gynecologic cancers completed assessments on an e-tablet prior to office visits. They received electronically generated supportive care plans during visits. We then randomly selected patients to be interviewed to report their outcomes. Outcomes reported included usability and satisfaction via a 1–5 Likert scale; care plan referrals were generated individually from the PROs across categories of recommendations.
What might be an example of a supportive care plan created from a PRO?
For example, patients report general pain, we might recommend that they keep a record of their pain and consider the use of alternative, complementary, nonpharmacologic or integrative therapy for pain management. We make these recommendations available on a flash drive and hard copy for patients to take away. Patients would then be given “tasks.” We might give them educational resources on managing cancer pain to read. We might ask them to keep a daily pain diary. Then, we create a schedule focused on the PRO, tailoring resources into the care plan. Patients received recommendations at different rates for different reasons.
How was this protocol received by patients and providers?
On a 1–5 scale, patients and providers had a mean satisfaction of 3.9 and 4.5, respectively. Providers had satisfaction with the platform’s ability to identify and assess patient symptoms, and to address patient concerns and distress derived from PROs. Moreover, all users found a high level of usability in an ease of use, desire to use, and low need for assistance—4.0 satisfaction for patients and 4.3 for providers, on the 1–5 scale.
The qualitative highlights were also positive. A cancer center director, for example, said the platform allowed him to direct encounters to patient needs and goals of care in a way he was not typically able. One gynecologic oncologist said the system is “fantastic” and it is “what you and I would want if we had cancer. I tell all my patients to use it.” Patients echoed the sentiments, saying the system reminded them to bring up certain issues, which made visits much more thorough. One patient said it made a big change in symptom management based on recommendations of the care plan with very positive outcomes.
What are the key takeaways?
PROs are here and now. There is technology that can support PROs to drive quality care. The care planning system is a novel platform with high usability and satisfaction, and it provides a discussion template for visit concerns. It also tracks symptoms over time, recommends referrals based on individualized disease and personal characteristics and symptoms, and includes survivorship care planning at the end of treatment.
Is there anything else you would like to add?
I’d like to acknowledge the rest of the study team: Judy Miller, RN, BSN; Randy Gibb, MD; Erin Stevens, MD; Justin Botsford-Miller, MD; Linda Allen, RN, BSN; Carrie Stricker, PhD, APRN; and SarahLena Panzer, MS.