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Two older men have identical lower urinary tract symptoms. They frequently feel the urgency to urinate, and yet they have difficulty voiding. They wake up during the night several times to go to the bathroom.
One man is retired and spends his days puttering around in his garden or his workshop; he isn’t bothered much by his symptoms. The other man is the CEO of a major corporation. His urinary urgency forces him to take breaks from important board meetings. Combined with the stress of his job, his symptoms present an overwhelming problem.
That dichotomy explains why outcomes management increasingly seeks to measure the patient’s perspective through a basic quality-of-life survey. Not every patient is equally bothered by the same set of symptoms. A successful outcome, in the patient’s eyes, requires a significant improvement in the symptoms that matter.
"If a person doesn’t have a problem [with his or her condition], you wouldn’t want to do anything too extreme to solve it," says Floyd J. Fowler Jr., PhD, senior research fellow at the Center for Survey Research at the University of Massachusetts in Boston. "If you don’t take into account how much it’s affecting the patient, it’s hard to figure out what is the optimal treatment from the patient’s point of view."
Gauging the patient’s perspective goes well beyond asking how they are getting along in their daily lives.
"It’s very enlightening now that doctors are asking patients how they feel," says Jay F. Piccirillo, MD, an otolaryngologist and director of the Clinical Outcomes Research Office of Washington University School of Medicine in St. Louis. "We’ve got functional status measures that ask, How far can you walk? Can you do activities of daily living?’ But when you talk about health-related quality of life, that goes into another domain that is a uniquely personal perspective.
"Two people who can walk the same distance don’t necessarily have the exact same quality of life," he says. "It’s not only how far you walk [that counts] but how much you want to walk."
One simple question, called the symptom satisfaction measure, has evolved as a valid and useful way to measure the patient’s symptom-related quality of life: If you were to spend the rest of your life with these symptoms just the way they are now, how would you feel about that? The patient responds on a six-point scale: delighted, pleased, mostly satisfied, mixed, mostly dissatisfied, unhappy, and terrible.
The International Consensus Committee of the World Health Organization in Geneva, Switzerland, incorporated that question into its assessment tool for benign prostatic hyperplasia, along with seven other questions that focus on prostate symptoms and provide an overall symptom score. (For a sample of the questionnaire, see p. 112.)
"It’s a very valuable tool," says H. Logan Holtgrewe, MD, FACS, a urologist in Annapolis, MD, and chairman of the health policy council of the American Urological Association in Baltimore. "You use it upfront when you first see a new patient to quantify the level of their symptoms. If they’re mildly symptomatic, I don’t treat them. I’ve always felt the impact on quality of life was a very important aspect of (disease) management."
Generally, there’s a correlation between the severity of symptoms and the patient’s response to the quality-of-life measure, says Holtgrewe, who is former president of the urological association.
By giving the questionnaire to patients to assess their conditions before and after treatment, physicians can quantify the symptom improvement, he says. "It’s very helpful for the patients to be able to tell you how much better they are," says Holtgrewe.
In fact, when the doctor asks, "How are you feeling?" the patient may profess to be much better. Yet the symptom score may be virtually unchanged from the last visit. The reason for that contradiction? "Patients often want to please their doctors," says Holtgrewe.
The standardized symptom satisfaction measure is far superior to a casual question, agrees Fowler. The measure has a six-point scale that can be compared from visit to visit. "It helps to put a patient in a context with other patients in similar situations, and it helps physicians monitor patients over time," he says. "Is it getting worse or is it getting better? To go back and have them answer the same question might be helpful."
Piccirillo has developed a slightly different method of determining just which symptoms matter to patients. In the Sino-Nasal Outcome Test-20, he asks them 20 questions about their symptoms of rhinosinusitis. He then directs them to identify the five symptoms that they feel are most important and hope will improve with treatment. (For a copy of the test, see p. 113.)
"We measure the change on all 20 [symptom] items, but we also measure the change in the items that are most important to patients," he says.
The sino-nasal test includes the social and emotional impact of rhinosinusitis, such as reduced productivity and concentration. The questions are designed to give physicians information on the full range of problems associated with the chronic ailment, says Piccirillo. It evolved from a lengthier Rhinosinusitis Outcome Measure that included questions about physical, social and emotional functioning, and pain.1
In fact, studies by Richard Gliklich, MD, at the Massachusetts Eye and Ear Infirmary in Boston have shown that sinusitis patients suffer a loss of physical functioning that is similar in severity to patients with heart disease.2
Piccirillo suggests that physicians administer the test to patients at their initial visits (pre-treatment) and at regular intervals thereafter. If they undergo surgery, the patients should fill out the sinus questionnaire pre-operatively, then at 12 weeks, six months, and one year post-operatively, he advises.
In addition to comparing symptom scores, Piccirillo looks for changes in those symptoms the patients believe are most important. That may spark further dialogue about the effectiveness of treatment, he says.
To obtain adequate follow-up of treatment, physicians may need to mail the survey to patients, he says. "Patients don’t come to the doctor’s office for sinusitis unless they’re bothered," says Piccirillo. "You need to send it out in regular intervals regardless of whether they come to you or not."
Quality-of-life measures are helping physicians and their patients decide on treatments in other areas, such as hysterectomy. They can highlight unresolved problems, as well.
In fact, in a study of back pain patients in primary care, the symptom satisfaction measure revealed poor outcomes for some 30% of those treated even a year later.3 (For details of the study, see related story, p. 111.)
Physicians could discover many of their patients’ lingering concerns by using a functional health assessment asking whether they’re missing work, having trouble sleeping, etc., notes Daniel Cherkin, PhD, senior scientific investigator with the Center for Health Studies at Group Health Cooperative of Puget Sound in Seattle and lead author of the back pain study.
But the symptom satisfaction measure is an effective way to "cut to the quick," he says. "Pain is totally subjective," Cherkin says. "No matter what level of disability this person might have, if he or she would feel unhappy being like this for a long period of time, there’s a problem."
[Editor’s note: For more information about the International Prostate Symptom Score and Quality of Life Assessment, contact Health Policy Department at the American Urological Association, 1120 N. Charles Street, Baltimore, MD 21201-5559. Telephone: (410) 223-4310.
For more information about the Sino-Nasal Outcome Test-20, contact Dr. Jay Piccirillo, Director, Clinical Outcomes Research Office, Department of Otolaryngology, Washington University School of Medicine, Box 8115, 517 Euclid Ave., St. Louis, MO 63110. Telephone: (314) 362-7394.]