I’m always glad to hear or read stories and articles about doctors (re)learning to treat the whole patient -the physical, mental and emotional turmoil that sometimes coincides with the pain/frustration/fear of the patient’s ailment.
“If you’re having surgery, a doctor’s technical skills and solid experience might appear more important than his or her personal beliefs. But if you have a serious, chronic illness, or one requiring long-term management, you should make efforts to partner with a physician whose philosophies are congruent with your own.” -Dr. Weil
By LAURA LANDRO @ The Wall Street Journal
When Amy Messier was preparing to undergo back surgery, doctors asked her to fill out a survey with an unusual question: “Have you felt so down in the dumps that nothing could cheer you up?”
Many medical conditions significantly affect the quality of a patient’s emotional and social life, which often isn’t apparent from physical measurements and lab tests alone. Now, more doctors are inquiring about their patients’ pain, difficulty accomplishing everyday activities, embarrassment about a condition and other issues that physicians traditionally haven’t considered. The insights can help determine how aggressively to treat an illness and what alternative therapies to offer certain patients, health-care experts say.
“We are trying to define health not just in the degree of rotation you have in your new knee, but can you walk your grandson to the school bus and do the things that make your life full and meaningful,” says Martha Bayliss, a vice president and senior scientist at QualityMetric, a unit of UnitedHealth Group Inc. that designs questionnaires for use in various medical specialties.
Ms. Messier, 44 years old, is a patient at the Spine Center at Dartmouth-Hitchcock Medical Center in Lebanon, N.H., which inquires in a questionnaire about patients’ limitations due to emotional issues and problems with social functioning. The surveys are completed at a patient’s first visit and at return visits more than six weeks apart to identify any changes that might call for altering treatment. The questions “are a useful tool as far as keeping tabs on how well I’m doing,” Ms. Messier says.
William Abdu, the spine center’s medical director, says the surveys are part of the center’s shared decision-making approach between doctors and patients. Understanding how a spinal condition affects quality of life can help determine, for example, whether a patient needs surgery or would do just as well with physical therapy, he says. “We pick up information [with the questionnaires] that patients are generally not planning to share with us,” he says. “For us, it is as important as looking at an X-ray or an MRI.”
Tools to measure quality of life have been used in medical research for decades. Now, health-care companies are adopting them for patient care, in part to identify which people would most benefit from aggressive treatments, especially those that are costly and carry extra risks. Such measurements are also being taken after treatment, including as part of a new federally funded program, to gauge outcomes and patient satisfaction.
QualityMetric licenses 3.8 million surveys a year to health-care providers, drug companies and researchers; it scored 350,000 surveys completed by patients in U.S. health systems and doctors’ offices last year, compared to 10,000 in 2000. Among the most popular is a general 12-question survey that asks how a patient’s health limits the ability to accomplish regular daily activities. Another is a five-question asthma-control test that inquires how often the condition has kept a patient from getting much done at work, school or home.
Discussing quality of life can help doctors and patients weigh the benefits and risks of different therapies.
For example, psoriasis, an autoimmune disease that causes painful and unsightly rashes, has a number of treatment options: Inexpensive topical lotions can be sticky and uncomfortable, ultraviolet-light machines carry a risk of skin cancer, and coal-tar baths can require hospitalization. Various chemotherapy drugs have different side effects and risks. And newer biologic drugs that target the immune system have been effective but are costly, must be self-injected, and carry risks including susceptibility to infection.
Kasi Burns, who has suffered with psoriasis since she was 12, says she has worked with her doctor to determine which therapy might be best for her. The 30-year-old wasn’t able to tolerate UV-light treatments or chemotherapy drugs. Because she is a single mother of a 10-year-old daughter, quality-of-life concerns have led her to avoid treatments with a higher risk of causing serious side effects.
“I can’t just randomly try things that could hurt me because I have to be there for my daughter,” says Ms. Burns, a sales representative in Cedar Rapids, Iowa, who is now taking a biologic drug called Enbrel. Though she still gets occasional flare-ups of psoriasis, she says she tries to be less self-conscious about them.
Dermatologists use a number of questionnaires to get a sense of how badly a skin condition affects a patient’s quality of life. “A doctor can walk into a room and decide that a patient had mild disease they don’t need to treat, but a patient could be suffering dramatically. Other patients could seem to have horrible disease but it isn’t affecting their life that much,” says Joel Gelfand, a dermatologist at the University of Pennsylvania.
Dr. Gelfand, who has conducted national surveys of patients with the support of the National Psoriasis Foundation, says he asks his own patients to participate in the surveys. Sometimes, when facing questions such as whether a patient’s skin condition is causing embarrassment, frustration and social isolation, “it may be the first time a patient has been asked that in such a frank manner and they sometimes break down and cry,” he says.
John Latella, a 70-year-old West Granby, Conn., retiree, was diagnosed with psoriasis 48 years ago. He says he determined early on not to let his condition overwhelm him or restrict his activities and family life, especially as he watched some fellow sufferers “become hermits without a social life.”
One time Mr. Latella was in the hospital for three weeks for a series of tar baths, a treatment he decided interfered too much with his quality of life. UV-light treatments were out after he contracted a minor skin cancer. As he got older and developed other health issues, including a form of arthritis related to the psoriasis, he and his doctor decided he should begin a biologic drug called Humira because it would better control the disease.
He says he was comfortable with the drug’s risks and possible side effects. “I’ve dealt with [the disease] all my life and I was ready to go one more step,” he says. He says his psoriasis spots are now down to about 1% of his body, and he is able to focus on his hobby of building wooden-block models, volunteering with the psoriasis foundation—and picking up his grandson from school each day.