"All it took was an idea"

Grassroots pain programs empower patients, ease family doctors' burden

By Gillian Woodford

About two years ago Kingston family physician Ruth Dubin was chatting on the phone with a friend who's a palliative care nurse. The two got to talking about pain. The kind of pain they saw every day in the patients they worked with. Dr Dubin was frustrated that there was little she could do for her chronic pain patients. "There's nothing in Kingston," she says. "There's no pain clinic. And the one specialist we had just closed his doors."

They heard about this exercise program at the local YMCA for osteoarthritis patients that really seemed to be working. Dr Dubin did some digging about the program and liked what she saw. She made some calls and gathered together a group of like-minded doctors, physiotherapists, occupational therapists and others to get together and talk some more about pain. Out of these meetings was born the Y-Pep program.

"All it took was an idea," says Dr Dubin. "It's really snowballed." Word of Y-Pep's positive results has spread and Dr Dubin and her research partner, Cheryl King-Van Vlack, a rehabilitation professor at Queen's, are now in high demand at pain conferences. Their initial findings, says Dr Dubin, "knocked me off my pegs." "Chronic pain patients are as disabled as patients with chronic liver failure," she says. "We family doctors underestimate the chronic pain of our patients." They published full study results in September in Practical Pain Management.

THE PROGRAM
The main thrust of programs like Y-Pep is that helping patients to take charge of their own chronic illness boosts their confidence and improves their quality of life. The Kingston program is a 12-week education and exercise program. Frail elderly, patients with addiction problems, spinal cord injuries and neuropathic pain (exercise doesn't help) and anyone who's not well enough to do the exercises are excluded. The exercises portion starts out with low-impact activities like walking, yoga, tai chi and swimming. Then they move on to the gym. "Chronic pain patients are very tired, and exercise initially makes them worse," notes Dr Dubin. But over the course of their study, they found that the worst pain was reduced, and although daily pain scores plateaued during and post-study, patients' perception of pain and its affect on their quality of life significantly decreased.

The education component of Y-Pep is based on a chronic pain program developed by Dr Sandra LeFort, a nursing professor at Memorial, which was itself an adaptation of the famous arthritis self-management program developed by Kate Lorig at Stanford in the late 70s.

"The beauty is that we say to patients, here are a whole host of strategies û figure out which one works for you," says Dr LeFort.

Traditional patient education is based on an expert (physician or nurse) telling the patient what they should do. In the self-management model, patient education is more akin to facilitated brainstorming sessions. "Adults don't like to be told what's good for them. So instead, we talk — about relaxation, exercise, learning self-reliance, problem-solving," explains Dr LeFort. "A big piece of the program is working on small attainable goals — exercise, socialize, eat better. The following week they come back and report how they did and the group helps redefine the goal."

The education aspect seemed to have the biggest impact on patients. "We interviewed clients and found that the important thing was the group interaction," says Dr Dubin. "Chronic pain patients tend to be isolated. They made friends, they didn't feel so alone, they really blossomed."

The results speak for themselves. "Their depression levels fell significantly, which was really nice," says Dr Dubin. "One of my patients has gone completely off their narcotics, several have gone back to work part-time."

SITUATION CRITICAL
"I call it the John Wayne phenomenon," says Canadian Pain Society (CPS) past president and chronic pain specialist Roman Jovey. "In our society, you're a hero if you put up with pain. Our patients should be complaining û loudly." Dr Jovey works at the Centres for Pain Management in Mississauga, which has also picked up Sandra LeFort's program. "Patients love it," he says.

He decries the lack of training and resources given to doctors to treat chronic pain. Vets get more than three times more pain training than MDs, according to a November CPS survey of med and vet faculties across the country. As a result, "doctors feel uncomfortable treating pain," he says. Dr Jovey and his fellow pain experts are pushing the Royal College of Physicians and Surgeons to start a fellowship for pain management, like they have in the US and the UK.

In the meantime, Dr Jovey and Dr Dubin urge their colleagues to get involved û for their own sake as well as their patients'.

"We were running around like headless chickens," says Dr Dubin. "Now other docs are referring to Y-Pep and we're getting together to convince the government we need something in Kingston."

The initial time investment is well worth it, say the doctors. "Doctors think 'It's too complicated, I don't have the time to treat pain,'" says Dr Jovey. "The patients I had who went to the program are coming in less often. They're better, they're happier," says Dr Dubin. How often do you get to say that about a chronically ill patient?