National DMDA calls for broadening of focus from diagnosis to improvements in management of depression
Chicago, IL, January 22, 2001 - More than three quarters of the people being treated for major depression feel their illness isn't under complete control and more than half of those who have ever had side effects stopped using their antidepressant because of the side effects, a new study reveals. The landmark survey, conducted for the National Depressive and Manic-Depressive Association (National DMDA), identifies that a significant communication gap between primary care physicians and patients is at the root of the problem.
As a result, National DMDA is issuing a "call to action" to the primary care community and patients to open new channels of communication to improve chances for successful recovery among the growing number of consumers who turn to primary care physicians for treatment.
"This data reveals a serious disconnect in the patient/physician relationship. Depression is more disabling than many other chronic diseases and more complicated to treat because there is no equivalent to a blood test to determine if a patient is getting better. The most important tool we have to monitor progress during the treatment process is open and effective communication," commented Drew Pinsky, MD, a practicing internist, cohost of the nationally syndicated call-in program "Loveline," and participant in the National DMDA initiative. "What's particularly disturbing is that it's unnecessary to have to make a trade-off of feeling somewhat better at the expense of incomplete symptom relief or persistent side effects," said Pinsky.
Doctors and Patients Don't Talk About Side Effects
Findings from the survey - Beyond Diagnosis: A Landmark Survey on Depression and Treatment - report discrepancies between physicians and patients on perceptions concerning antidepressant therapy and the impact of side effects, mainly on disclosure and discussions of what side effects to expect, what should be tolerated and what could be done. The survey involved interviews with 1,001 patients and nearly 900 primary care physicians. Key findings include:
Patients report that their depression is not under complete control and they have experienced few specific quality-of-life improvements. While the majority of patients say antidepressant therapy has had a positive effect on their lives (85%), less than a quarter feel their depression has been completely controlled in the past two months, despite taking their current medications for an average of three to five years. In addition, while a substantial number of patients reported that before treatment depression had a negative effect on several aspects of their lives, including sleeping (76%) and their sex life (59%), significantly fewer were able to identify improvements in these areas as a result of treatment (sleeping - 13%, regained sex drive - 3%).
Doctors say they routinely alert patients about side effects when prescribing antidepressants; patients reveal this is often not the case. The gap is most prominent with sexual side effects and weight gain, two side effects that physicians acknowledge as very common, but ones that most patients rarely link to their antidepressant. To compound this problem, these two topics are difficult for people to bring up with physicians in general. While 69% of physicians say they usually mention sexual problems as a possible side effect and 47% usually mention weight gain, significantly fewer patients say either of these was ever mentioned (16% sexual problems; 16% weight gain).
Patients believe they have to tolerate side effects unnecessarily when other options exist. Few primary care physicians (27%) believe that antidepressant side effects are temporary or can't be avoided (9%), compared to a significant proportion of patients (59% and 40%, respectively) who believe they have to put up with side effects for these very reasons. This raises questions about how often patients withhold concerns or experiences with side effects from physicians, and whether physicians consistently monitor the impact of treatment side effects throughout the duration of therapy.
Patients may feel discouraged about raising side effect concerns with physicians. While 90% of the patients who had side effects say they told their primary care doctor about them, close to 20% also report that their doctor did not do anything in response. Specifically, 9% were told it was "normal," 7% were told to "wait and see," and another 4% said their doctor simply did nothing. This scenario could be linked to patients' perceptions that side effects must be tolerated -- if the doctor dismisses the patient's concerns, patients may be reluctant to raise the topic again and assume they have to put up with the side effect in order to get better.
Side effects lead to serious forms of non-compliance. Almost half of all patients surveyed (47%) report having had side effects, which caused 55% to stop taking their antidepressant and 17% to skip doses. A significant number of patients still report having side effects (15%), though they have been taking their current antidepressant for an average of three years.
Patients are not offered the chance to participate in treatment decisions. While 71% of the physicians say treatment decisions are made jointly with patients, only 54% of patients think this is the way treatment decisions occur. Furthermore, only 36% of patients report that their primary care doctor asked about their preferences or willingness to tolerate certain side effects before making a decision about which antidepressant to prescribe.
"Successful treatment of depression with medication should be based on both symptom relief and freedom from persistent or problematic side effects," said Lydia Lewis, executive director of National DMDA and someone who has personal experience with life-long depression. "This can best be achieved when physicians and patients talk more fully and openly throughout the course of treatment, and make changes or adjustments in antidepressant treatments tailored to each patient's needs."
"While we know that all antidepressants are equally effective, but that not every one works the same for each person, doctors and patients need to work together to find the best treatment for each individual's needs," added Dr. Pinsky.
National DMDA Calls for Move Beyond Diagnosis
National DMDA's "call to action" is one of the first such initiatives to focus on improving the treatment and management of depression beyond diagnosis and throughout the duration of therapy. Recognizing that both consumers and physicians need to take joint responsibility to improve outcomes in the treatment of depression, National DMDA is developing professional and patient education activities and also seeks collaborative relationships with the professional associations that represent the primary care community to do the same.
Eleven of the nation's leading primary care and mental health organizations joined National DMDA in the planning phase of this initiative. They included: the American College of Physicians-American Society of Internal Medicine, American Medical Association, Society of General Internal Medicine, Society of Teachers of Family Medicine, American Medical Women's Association, Association of Directors of Family Medicine, American Psychiatric Association, American Psychiatric Nurses Association, American Association for Marriage and Family Therapy, Illinois Academy of Family Physicians, and the MacArthur Initiative on Depression & Primary Care at Dartmouth Medical School.
This National DMDA initiative is funded through an unrestricted educational grant from GlaxoSmithKline.
Founded in 1986, National DMDA is the nation's largest patient-directed, illness-specific organization with more than 400 support groups across the United States and Canada. Its mission is to educate patients, family members, professionals and the public that mood disorders are treatable medical illnesses. For more information on depression and treatment, visit its website at www.ndmda.org or call 800-826-3632.
Editor's Note: Beyond Diagnosis: A Landmark Survey on Depression and Its Treatment was conducted by Schulman, Ronca and Bucuvalas, Inc., a national research firm that specializes in health issues. The margin of error is +/- 3.1 percentage points (95% confidence level) for the random sample of 1,001 patients and +/- 3.3 percentage points (95% confidence level) for the random sample of 881 doctors. For a copy of the full executive summary, contact Kelly Hammel or Geralyn LaNeve at 212/886-2200.