Depression And Bipolar Support Alliance Research Articles

Caregivers: Effective treatments needed for people with BD‐I

Nearly all caregivers of people living with bipolar I disorder (BD‐1) said that they wish there were more medications to effectively treat all of their loved one's symptoms of BD‐I, according to a new survey released by Alkermes and the Depression and Bipolar Support Alliance (DBSA) in observation of National Family Caregivers Month.

Debunking the myth of the ‘mentally ill’ mass shooter

The Depression and Bipolar Support Alliance (DBSA) acknowledges the heaviness that many people around the country are feeling in the wake of the mass shootings at Robb Elementary School in Uvalde, Texas, and Saint Francis Hospital in Tulsa, Oklahoma, which, sadly, follow on the heels of shooting incidents earlier this year in Buffalo, Dallas, and Los Angeles.

Integrating Stakeholder Engagement With Claims-Based Research on Health Insurance Design and Bipolar Disorder.

Researchers increasingly recognize that stakeholder involvement enhances research relevance and validity. However, reports of patient engagement in research that relies on administrative records data are rare. The authors' collaborative project combined quantitative and qualitative studies of costs and access to care among U.S. adults with employer-sponsored insurance. The authors analyzed insurance claims to estimate the impacts on enrollee costs and utilization after patients with bipolar disorder were switched from traditional coverage to high-deductible health plans. In parallel, in-depth interviews explored people's experiences accessing treatment for bipolar disorder. Academic investigators on the research team partnered with the Depression and Bipolar Support Alliance (DBSA), a national advocacy organization for people with mood disorders. Detailed personal stories from DBSA-recruited volunteers informed and complemented the claims analyses. Several DBSA audience forums and a stakeholder advisor panel contributed regular feedback on study issues. These multiple engagement modes drew inputs of varying intensity from diverse community segments. Efforts to include new voices must acknowledge individuals' distinct interests and barriers to research participation. Strong engagement leadership roles ensure productive communication between researchers and stakeholders. The involvement of people with direct experience of care is especially necessary in research that uses secondary data. Longitudinal, adaptable partnerships enable colearning and higher-quality research that captures the manifold dimensions of patient experiences.

DBSA launches new wellness program

The Depression and Bipolar Support Alliance (DBSA) has launched a new wellness program focused on the needs of 23 million people across the United States who live with mood disorders, officials stated in a May 12 news release. The DBSA Wellness Wheel is a holistic tool that helps people chart their strengths in seven key areas of their lives, according to Hannah Zeller, MSW, programs manager for the DBSA. “The wellness wheel is a concept used broadly in the mental health space,” Zeller explained. “We reviewed many models, focusing on how people with mood disorders might consider each area of wellness and landed on our seven areas.” Zeller and her colleagues created easy‐to‐follow prompts that help users think about their skills and habits — everything from how often they work out to how satisfied they are with their relationships. As users rate themselves, a full‐color map of their wellness emerges. The new program was released during Mental Health Awareness Month to provide practical tools for people living with mood disorders, said Maria Margaglione, director of programs for the DBSA. For more information, visit https://www.dbsalliance.org/.

Peer support for mood disorder: Characteristics and benefits from attending the Depression and Bipolar Support Alliance mutual-help organization

BackgroundMood disorders (MDs) are pervasive and debilitating psychiatric conditions. Many helpful psychological and psychopharmacological treatments exist, but MD's prevalence and chronicity often means relying purely on professional care can create financial strain on individuals and healthcare systems. Also, many individuals respond only partially to professionally-delivered medical/pharmacological interventions or are unable to tolerate or adhere to them. Peer-led mutual-help organizations (MHOs) have emerged and grown in the U.S. to extend and potentiate professional efforts or otherwise address needs unmet by professional care. The Depression and Bipolar Support Alliance (DBSA) is the largest of these, but beyond observational evidence, little is known about participation or benefits. Greater knowledge could inform the field regarding clinical and public health utility of peer-driven efforts. MethodCommunity-based cross-sectional comparative investigation of MD individuals attending (N = 202) or not attending (N = 105) DBSA. Measures included demographics, clinical characteristics and clinical service use, and indices of symptomatology, functioning, quality of life (QOL), and psychological well-being. ResultsCompared to non-DBSA participants, DBSA participants were more likely to be male and white and trended toward greater religious affiliation (p = 0.05). DBSA participants attended meetings about twice per month with two-thirds attending for more than one year. The DBSA cohort had a much higher proportion with bipolar I disorder and reported more lifetime and past 90-day use of acute, intensive, medical services and medications. There were no between-group differences on indices of QOL or psychological well-being, but within the DBSA group, greater DBSA attendance and involvement was associated with greater QOL and well-being, and less functional impairment. LimitationsCross-sectional design and regional sampling frame with unknown generalizability to national DBSA membership. ConclusionGiven the grave impact of MDs and that DBSA is freely available it may fill an important clinical and public health need by attracting and engaging MD individuals with greater functional instability and impairment. The positive association found between greater active DBSA participation and improvements in functioning and well-being, while promising, requires longitudinal investigation to formally establish the causal direction of effects.

Is obesity changing the phenotype of bipolar disorder from predominately euphoric toward mixed presentations?

Bipolar DisordersVolume 20, Issue 8 p. 685-686 DEBATE Is obesity changing the phenotype of bipolar disorder from predominately euphoric toward mixed presentations? Roger S. McIntyre, Corresponding Author Roger S. McIntyre roger.mcintyre@uhn.ca orcid.org/0000-0003-4733-2523 University of Toronto, Toronto, Canada Brain and Cognition Discovery Foundation (BCDF), Toronto, Canada Depression and Bipolar Support Alliance (DBSA), Chicago, Illinois Mood Disorders Psychopharmacology Unit, University Health Network, Toronto, Canada Guangzhou Medical University, Guangzhou, China College of Medicine, Korea University, Seoul, Republic of Korea Correspondence Roger S. McIntyre, University Health Network, Toronto, ON, Canada. Email: roger.mcintyre@uhn.caSearch for more papers by this author Roger S. McIntyre, Corresponding Author Roger S. McIntyre roger.mcintyre@uhn.ca orcid.org/0000-0003-4733-2523 University of Toronto, Toronto, Canada Brain and Cognition Discovery Foundation (BCDF), Toronto, Canada Depression and Bipolar Support Alliance (DBSA), Chicago, Illinois Mood Disorders Psychopharmacology Unit, University Health Network, Toronto, Canada Guangzhou Medical University, Guangzhou, China College of Medicine, Korea University, Seoul, Republic of Korea Correspondence Roger S. McIntyre, University Health Network, Toronto, ON, Canada. Email: roger.mcintyre@uhn.caSearch for more papers by this author First published: 09 November 2018 https://doi.org/10.1111/bdi.12717Citations: 4Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat No abstract is available for this article.Citing Literature Volume20, Issue8December 2018Pages 685-686 RelatedInformation

Factors That Impact Treatment Decisions: Results From an Online Survey of Individuals With Bipolar and Unipolar Depression.

To identify patient-reported factors that influence medication treatment decisions among individuals with bipolar and unipolar depression. The Depression and Bipolar Support Alliance (DBSA) conducted an online survey February 2016 to April 2016 asking participants about factors that influence treatment decisions (eg, starting and stopping specific medications). In total, 896 participants completed the survey (49.9% unipolar depression [n = 447] and 50.1% bipolar depression [n = 449]). The majority of respondents reported several previous medication trials. The most frequently reported factors impacting treatment decisions were side effects, doctor recommendations, cost, and how quickly the treatment will begin to work. The most common reason for changing treatments was ineffectiveness in the unipolar depression group and side effects in the bipolar depression group. Weight gain was the side effect that most commonly led respondents to discontinue a medication. When respondents currently using medications versus respondents not using medications were compared, doctor recommendations were more likely to be influential for those taking medications (P < .0001). Conversely, cost (P = .008) and impact on pregnancy/lactation (P = .045) were more likely to impact treatment decisions in participants not currently taking medications. Current medication use was associated with increased rates of perceived treatment effectiveness (P < .0001). Side effects, doctor recommendations, cost, and rapidity of antidepressant effects were determined to be particularly important factors in making treatment decisions, with doctor recommendations being more influential for medication users and cost being more influential for participants not using medications. These findings highlight the importance of patient-centered factors in adjudicating treatment decisions.

Treatment effectiveness and tolerability outcomes that are most important to individuals with bipolar and unipolar depression

ObjectiveTo evaluate patient-reported determinants of treatment effectiveness and tolerability amongst persons with major depressive or bipolar disorders. MethodsThe Depression and Bipolar Support Alliance (DBSA) conducted an online survey February 2016–April 2016 asking participants about which outcomes are most important in determining subjective treatment effectiveness and tolerability. ResultsIn total, 896 participants completed the survey [49.9% unipolar depression (n = 447) and 50.1% bipolar depression (n = 449)]. Survey respondents reported several previous medication trials with the minority (25% of depression and 29% of bipolar group) of respondents reporting that their current treatment plan was completely effective. When asked how they know that the treatment is working, for both groups, the highest rated response was, “I don't feel overly anxious, agitated or irritable.” Weight gain was the adverse effect that most commonly led respondents to discontinue a medication. Lethargy, emotional blunting, shaking/trembling and anxiety were also identified as common treatment-emergent experiences leading to medication discontinuation in greater than one-third of respondents. The bipolar group more frequently identified several signs that suggested treatment was working (e.g., improved neurocognitive function, improved sleep), as well as more frequently reported several reasons to discontinue medications (e.g., weight gain, trembling). ConclusionNumerous factors emerged as important to patients when evaluating treatment effectiveness and tolerability. Some of these factors are inadequately assessed by current standard clinical trial outcome measures. Considering these important patient-centred outcomes in future clinical trials, treatment guidelines and direct patient care may serve to improve patient satisfaction, quality of life and the therapeutic alliance.

Blog Brings Doctors, Patients Together to Address MH Issues

Back to table of contents Previous article Next article Community NewsFull AccessBlog Brings Doctors, Patients Together to Address MH IssuesVabren WattsVabren WattsSearch for more papers by this authorPublished Online:4 Oct 2013https://doi.org/10.1176/appi.pn.2013.9b12AbstractAn online forum helps clinicians and patients become better advocates during a period of dramatic change in the U.S. health care system.As preparations for the Affordable Care Act (ACA) rev up as more of the law goes into effect, some patients with mental illness and the clinicians who treat them are making sure that their voices are being heard—particularly by each other.One vehicle they are using to communicate their needs and concerns is the Care for Your Mind (CFYM) blog, an online forum for people with mood disorders—along with their families and psychiatrists—to discuss the mental health care system and changes that may affect them under health care reform.“Unfortunately, people living with mental illness do not have the political clout to address changes in their health care. Their voices are often stigmatized or dismissed,” said William Gilmer, M.D., a mood disorder specialist and an associate professor of clinical psychiatry at Feinberg School of Medicine at Northwestern University. “CFYM provides an opportunity for mental health public-policy discussions between clinicians, patients, and other interested constituents so that we, as a unit, may provide the best insight to key stakeholders and lawmakers,” he explained to Psychiatric News. Gilmer stressed that dialogue between all parties is important to ensure that the top priorities of those living with psychiatric disorders are met.Launched May 1, CFYM is a joint venture by the Depression and Bipolar Support Alliance (DBSA) and Families for Depression Awareness (FFDA).The blog has had close to 5,500 visitors, including 1,500 who arrived at the site via Facebook or Twitter referrals. “We wanted the CFYM blog to be accessible on as many platforms as possible—including Facebook and Twitter—in order to reach the masses of those most affected by mood disorders,” said DBSA President Allen Doederlein, who noted that he has had a mood disorder diagnosis since age 17. He explained that the voices of people with mood disorders as well as the people who care for them need to be front and center in this transition period for the health care system. According to the National Institute of Mental Health, mood disorders affect 21 million people in the United States annually, are linked to 90 percent of the nation’s suicides, and cost $23 billion a year in lost workdays. Despite the prevalence of these illnesses and the serious sequelae, only about half who need care receive adequate treatment. Susan Weinstein, J.D., director of programming and marketing for the FFDA, told Psychiatric News, “We are looking at the Affordable Care Act to open a lot of doors for people to get mental health care access. After we achieve access, then we are seeking quality.”Weinstein said that some of the issues often discussed on CFYM concern inadequate access to medication and health care providers, which is often amplified by geographical limitations, language barriers, and cultural challenges. “So we are really addressing a set of complex issues that our health care system is currently approaching,” she said.Cheryl Magrini, Ph.D., vice president of the DBSA Board of Directors, said the blog provides a wealth of valuable information. “The ACA can be so confusing….I’m finally learning about what it means for people to get access to insurance and what actions to take that will lead us down the quickest road to access it,” she told Psychiatric News. Magrini, who said she was diagnosed with bipolar I disorder in 2006, explained that she appreciates the blog for not being a platform for complaints by those with mood disorders or a “you [as a patient] should do this” website for psychiatric experts. “It is a true place for dialogue and conversation between patient, psychiatrist, and legislator,” she said.As for Gilmer, he said that physicians should be mindful of the intangible things that affect everyday lives of patients. “I think that clinicians should go to the website for issues that are concerns for our patients,” he said. “It helps us, as clinicians, to become better advocates and to help our patients become better advocates for themselves during this transitional period of our health care system.” ■Information about Care for Your Mind is posted at http://careforyourmind.org/. ISSUES NewArchived

Fiscal Issues Prominent at July Board Meeting

Fiscal Issues Prominent at July Board Meeting

The Recovery Concept: Clinician and Consumer Perspectives

This article presents an overview of the concept of recovery in serious and persistent mental illness from the perspective of both clinicians and consumers. Dr. Stotland, a psychiatrist, first highlights how treatment goals for bipolar disorder have changed in recent years, moving beyond symptomatic recovery to also encompass functional recovery (return to the level of functioning the person enjoyed before onset of the illness). She then discusses factors that play an important role in the recovery process, including resilience, the consumer's understanding of and participation in the treatment and recovery process, and collaboration between clinician and patient in setting specific functional goals as treatment progresses. She also focuses on the need for policy and system changes to facilitate recovery, including improved funding for recovery-oriented care, implementation of recovery-oriented, collaborative care models that bring together psychiatrists and primary care providers, and dissemination of improved tools for monitoring symptoms and functioning over time. Two relevant performance measures for monitoring changes in symptoms and level of functioning are discussed, with results of their field testing. Matthew Mattson, Director of Training for the Depression and Bipolar Support Alliance (DBSA), and Sue Bergeson, President of DBSA, then present the consumer's perspective on recovery-oriented care. Drawing on recommendations from the Institute of Medicine, the President's New Freedom Commission, the U.S. Surgeon General, and the Annapolis Coalition on the Behavioral Health Workforce, they stress that the ultimate goal of treatment must be recovery; that, to the greatest extent possible, care should based on consumers' needs and values; that consumers should take an active role in the design and delivery of their own care; and that a priority of all care delivery should be to engender hope. Promising research on peer support groups and the use of peer sup-port specialists as consumer-providers is then reviewed. The article concludes with 20 specific recommendations to help mental health professionals move beyond a focus on symptom reduction alone to more recovery-oriented care.

Patient perspectives on provider Competence: A view from the depression and bipolar support alliance

Health care providers want the very best for the patients they treat, and spend years studying treatment and keeping their medical knowledge current. But how providers put this knowledge into practice, more often than not, has a greater impact on outcomes than the knowledge itself. The Depression and Bipolar Support Alliance (DBSA) is a national patient-directed advocacy organization. Our mission is to improve the lives of people living with depression and bipolar disorder. DBSA is committed to empowering patients and their loved ones to become partners with their health care providers. This empowerment is achieved through education, improved communication, and setting wellness goals agreed upon by both health care provider and patient. In 2003, more than four million people, including patients, their loved ones, and providers asked for help from DBSA. The challenges these people struggled with revealed some basic but significant factors that are crucial to recovery for all people receiving mental health care. For optimum recovery, three factors must be in place: communication that is clear, thorough, and collaborative; treatment plans that include patient input, preferences, and needs; and recovery-oriented treatment that instills hope.

Challenging Disease Does Not Daunt Cadre of Dedicated Advocates

Back to table of contents Previous article Next article Professional NewsFull AccessChallenging Disease Does Not Daunt Cadre of Dedicated AdvocatesJim RosackJim RosackSearch for more papers by this authorPublished Online:5 Sep 2003https://doi.org/10.1176/pn.38.17.0006aLydia Lewis is growing tired of the long explanation she still feels compelled to give when she introduces herself. As president of the Depression and Bipolar Support Alliance (DBSA), she always makes sure she refers to the group’s old moniker, the National Depressive and Manic Depressive Association.Even so, some psychiatrists and mental health professionals still don’t show any sense of recognition.“I don’t really know how many psychiatrists know we are out there,” Lewis told Psychiatric News.Lewis noted that psychiatrists need patients as much as patients need psychiatrists. “What we need to do is act more like a team,” she emphasized.While lack of recognition may be common, she is tirelessly stumping to turn that around.“The thing that really stands out about us is that we are patient led—our board, our staff, our volunteers; more than half have bipolar disorder or depression,” Lewis said.A donor-based organization, DBSA’s popularity has been growing exponentially. An active media campaign—including a public-service announcement featuring the surgeon general—and working with local physicians led to more than 1 million hits to the organization’s Web site, www.dbsaalliance.org, last year. During January alone, more than 88,000 informational brochures were downloaded from the site.DBSA has conducted several surveys on the understanding, expectations, and needs of patients regarding their illness and its treatment, as well as on public perception of bipolar disorder and depression.“Nearly half of all Americans have never heard of bipolar disorder,” Lewis noted, “and one-quarter of Americans think that people with a mood disorder are dangerous. More than two-thirds of Americans believe that psychiatric medications are habit forming and change personality. And 12 percent of Americans still associate mental illness with words like ‘crazy,’ ‘delusional,’ or ‘needing a straightjacket!’ ”What Patients Say They NeedThat ignorance and stigma transfer directly to patients, Lewis emphasized.“Patients are absolutely desperate for information. A high percentage of patients,” Lewis said, “would like their psychiatrist to give them written information, yet only about half of those get any. And they are not too enthusiastic about pharmaceutical company pamphlets.”Lewis urged physicians to refer patients to the DBSA Web site, where they will find information written by fellow patients and reviewed by experts in the field of mood disorders.‘Disease of Isolation’“This is such a disease of isolation,” Lewis continued, “but when people find us, things just kind of open up.” Lewis added that due to the constraints that managed care imposes on psychiatrists, some patients tell her they learn more from the DBSA Web site than from their doctors. “The psychiatrists simply don’t have time anymore to really sit down and educate and inform their patients,” she noted “It’s terrible really.”DBSA operates more than 1,500 support groups in communities in every state. Groups are run by peers, patients, and those in recovery. “These people have been where new patients currently are, and the groups allow them to have much more face time together than they ever have with their doctor. Members tell us the groups allow them to communicate better with their doctors and even adhere to their treatment plans better.”Lewis also called on physicians to become familiar with local DBSA members and support-group leaders in their communities. Network with them, she urged, so that when patients need support, you can “refer them to the local support-group leader directly and hand them their phone number instead of just referring them to the Web site. But at the very least, refer them to the Web site.”DBSA also works on the state and national levels advocating for mental health parity and against restrictive formularies and psychologist prescribing. The group holds two conferences each year, one scientific and the other an annual meeting for patients and support-group leaders to learn the latest advances in diagnosis and treatment.More information about DBSA is posted on the Web at www.dbsaalliance.org. ▪ ISSUES NewArchived

With Politics and Mental Illness, The More Things Change. . .

With Politics and Mental Illness, The More Things Change. . .