Amplifying The Patient Voice
It’s something that has happened to all of us; you arrive on time for your 10:30 a.m. doctor’s appointment and wait an hour, only to have the doctor spend 15 minutes with you. Doctors are busy people.
THOMAS LEBLANC, MD, is no different, but early in his career as a medical student, he took special notice of this problem: doctors do not have much time to listen to the patient, and they focus too much on the medical aspects and not enough on the person.
“I saw that we often fail to attend to patients’ lived experiences of illness, so I decided to make that a priority in my research and in my practice—to amplify the patient voice in cancer care,” says LeBlanc, who treats patients with blood cancers at Duke Cancer Center Institute (DCI).
LeBlanc, an associate professor of medicine, is excited about patient-reported outcomes (PROs), a set of tools that allow patients to self-report their own experiences via a survey or even an app. PROs give doctors and researchers measurements of the patient’s quality of life, mobility, emotional state, social well-being, and daily symptoms.
In recent years, PROs are playing an increasing role in cancer research and care. They help physicians get information directly from their patients about what they are going through and how they are feeling—information that blood work or a physical exam can’t reveal. LeBlanc and colleague Amy Abernethy, MD, adjunct professor of medicine, recently reviewed the state of the science of PROs in cancer care, in an article publishedin the journal Nature Reviews Clinical Oncology.
As one way of measuring patient quality of life, the Duke Cancer Patient Support Program uses the National Comprehensive Cancer Network (NCCN) distress thermometer, a paper survey that allows cancer patients to inform their doctors about family, emotional, spiritual, physical, and practical concerns. Nurses and patient navigators at Duke Cancer Institute gather the data and refer patients to the services that can help them.
LeBlanc is currently working with CHEYENNE CORBETT, PhD, LMFT, director of the Duke Cancer Patient Support Program, and with DCI leadership on expanding the NCCN distress thermometer initiative to also include symptom screening, which will assess for common symptoms like pain, weight loss, nausea, fatigue, and physical functioning.
They plan to digitize the paper survey using the Duke patient portal (Duke MyChart), so that patients can fill it out electronically before they visit the clinic or in the waiting room.
They hope to roll out a pilot program later in 2018.
“Having patients complete the distress thermometer electronically will improve clinicians’ workflow, save time for our nurses in clinic, and help us provide better care to patients,” LeBlanc says.
Corbett adds, “The distress screening tool helps us introduce to patients that we are concerned about how they are coping through their cancer experience and ensure that we continue to ask, so we can help identify challenges early. Digitizing this process will help people access information and services quickly, understand all that is available to them and how it can help, and see the impact of the care through their reported outcomes.”
LEARN MORE about the Duke Cancer Patient Support Program.
This article originally appeared in the Spring 2018 issue of Breakthroughs, a magazine produced twice yearly by Duke Cancer Institute Office of Development. Subscribe to Breakthroughs.
Circle photo (top): graphic by James Steinberg