The Digital Road to "Whole Person" Cancer Care

By June Spence

Ah, the waiting room. No matter what kind of appointment you're waiting for, it's almost always the same: vintage Family Circle magazines to browse, easy listening or talk radio droning in the background, and those clipboards with forms to be filled out in triplicate.

You may while away the time pondering such questions as: Is your personal  information disappearing into a file somewhere? Do they really need your address and insurance ID numbers again?

The cancer clinics at Duke are changing this waiting game with a digitized experiment.

When patients arrive for an appointment, instead of the clipboard they're given a wireless, tablet-style computer. It guides them through a series of questions about their symptoms and quality of life.

Their clinician gets a report of the answers, and he or she can use the information to make the visit more productive -- whether that's by adjusting medical treatment of a particular symptom, providing an educational video for the patient to view while waiting for an exam or during chemotherapy, or some other service.

Amy Abernethy, MD, who directs the Duke Cancer Care Research Program, says that patients find the new system easy and even pleasant.

They're presented with a symptom such as headache and asked to rate the severity from zero ("not a problem") to 10 ("as bad as possible"). They touch the appropriate number with a stylus, it vanishes from the screen, and the next symptom or question appears.

The format makes it easier to provide frank answers to sensitive questions. "Our studies are showing that the computer allows people to say things they wouldn't have otherwise said. We really saw the difference in reporting difficulties with sexual function and social support. It can be hard to be honest when your spouse is right next to you looking over your shoulder at the clipboard, but electronically, you provide the answer and it disappears."

The clinician can immediately compare the patient's answers with those from previous visits and get a strong sense of whether or not symptoms are truly improving.

"Research shows these reports to be very reliable," notes Abernethy. And in the aggregate, the information patients provide here helps create a bigger picture of what's happening to a group of cancer patients over time.

Researchers and clinicians are assessing this long-term data and using it to improve patient care. "For example, among the breast cancer patients we noticed that sexual distress was an underserved concern," says Abernethy.

"I don’t think anyone had any idea just how much of an issue it was, but one in three people were scoring over five in that area. [A score of four to six denotes a moderate problem, while seven to nine denotes a severe problem.]

So this was remarkable. It very quickly put us onto two pathways: offering patients more education through the tablets and working with psychologists to develop coping methods for patients who report that problem."

Abernethy describes the system as providing "a kind of triage. Through this technology we can better understand patients' needs, whether they require more education about their condition or help with transportation or payment. There's so much support on hand at Duke; we just need to appropriately match our patients with what is available."

Rather than having a distancing or depersonalizing effect, handing patients a computer has become a means to provide comprehensive, whole-person care.

"I'm interested in improving the cancer patient's experience," says Abernethy. "You can't do that if you don't know what the problems are, how to measure them, or how good of a job you're doing. We're taking care of the whole person here, not just their cancer."