- Email: [email protected]
Using Direct-to-Consumer Marketing Strategies With Obsessive-Compulsive Disorder in the Nonprofit Sector
Available online at www.sciencedirect.com
Behavior Therapy 43 (2012) 251 – 256
www.elsevier.com/locate/bt
Using Direct-to-Consumer Marketing Strategies With Obsessive-Compulsive Disorder in the Nonprofit Sector Jeff Szymanski International OCD Foundation
Three to four million individuals struggle with obsessive– compulsive disorder (OCD) in the United States at any given time. OCD can be a debilitating disorder associated with significant quality–of-life and occupational impairment. First-line treatments for OCD (selective serotonin reuptake inhibitors and exposure and response prevention therapy) have been shown to be effective; yet, many individuals suffering from OCD experience multiple barriers to accessing these treatments. In fact, it can take as many as 17 years from onset of symptoms to effective treatment. Given the need to increase access to and utilization of effective treatments, direct-to-consumer marketing in the context of OCD appears crucial. The International OCD Foundation (formerly the Obsessive Compulsive Foundation) was established as a nonprofit organization with a mission to educate the public and mental health professionals about appropriate practice guidelines, raise awareness of the disorder, and ensure that individuals looking for treatment find the necessary resources. This paper reviews the obstacles those struggling with OCD face in their attempts to alleviate suffering, as well as the direct-to-consumer strategies and tactics used by the International OCD Foundation to improve access to empirically supported, effective treatment.
Keywords: evidence based treatments; direct-to-consumer marketing; OCD
APPROXIMATELY 2 TO 3 MILLION ADULTS in the United States have obsessive-compulsive disorder or OCD (Kessler, Chiu, Demler, & Walters, 2005; Ruscio, Stein, Chiu, & Kessler, 2010). In addition, another Address correspondence to Jeff Szymanski, Ph.D., Executive Director, International OCD Foundation, Inc., 112 Water Street, #501, Boston, MA, 02109; e-mail: [email protected]. 0005-7894/43/251-256/$1.00/0 © 2011 Association for Behavioral and Cognitive Therapies. Published by Elsevier Ltd. All rights reserved.
500,000 children and adolescents may be suffering from OCD (March & Benton, 2007). OCD can be debilitating and, as symptoms of the disorder increase in severity, a comparable drop in quality of life occurs (Eisen et al., 2006). Individuals with OCD have also shown significant occupational impairment, with one sample reporting that 38% of individuals with an OCD diagnosis were unable to work due to psychiatric symptoms (Mancebo et al., 2008). Given the body of literature supporting the efficacy of selective serotonin reuptake inhibitors (SSRIs) and exposure and response prevention (ERP) in the treatment of OCD, both are recommended as first-line treatments for the disorder (American Psychiatric Association, 2007). However, many individuals suffering from OCD experience multiple barriers to accessing these treatments (Belloch, del Valle, Morillo, Carrio, & Cabedo, 2009; Blanco et al., 2006). In fact, research suggests that it can take as many as 17 years from onset of symptoms to effective treatment (Hollander et al., 1997), whereas other studies have found that as many as 40% of individuals qualifying for an OCD diagnosis have never received any treatment at all (Goodwin, Koenen, Hellman, Guardino, & Stuening, 2002). What accounts for this treatment gap? Despite increased media coverage of OCD in newspapers, magazines, movies, and television, many individuals continue to be unaware of the symptoms of OCD. An individual experiencing OCD symptoms might acknowledge that something is wrong, but at the same time lack sufficient knowledge or resources to correctly label what he or she is experiencing (Belloch et al., 2009). Belloch and colleagues found that only one participant in their study sought treatment because he or she had information about OCD. Indeed, this lack of education about OCD continues to create a stumbling block for those needing help.
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Alternatively, some individuals with OCD symptoms are aware of their diagnosis but decide not to seek treatment. Reasons for this decision include hoping the symptoms will resolve without treatment, worry about being labeled “mentally ill,” and feelings of shame about the content of obsessive thoughts (Belloch et al., 2009). In one study, only 36% of participants consulted a doctor or other professional about their struggle with OCD symptoms (Mayerovitch et al., 2003). Finally, accessing effective treatment and resources provides another set of barriers. Though SSRIs and cognitive behavior therapy (CBT; specifically ERP) are acknowledged as first-line treatments (American Psychiatric Association, 2007), one study found that only 65% of patients with OCD were receiving SSRIs, and just 39% of patients were being prescribed the medication at an effective dose (Blanco et al., 2006). In this same sample, 77% of patients were in psychotherapy for their OCD, but only 7.5% were receiving CBT. Thus, there appears to be a significant need to educate both the public and the mental health field about empirically supported treatments for OCD.
Direct-to-Consumer Marketing Strategies Given this context, direct-to-consumer marketing strategies appear crucial. The International OCD Foundation (IOCDF; formerly the Obsessive Compulsive Foundation) was established as a nonprofit organization with a mission to educate the public and mental health professionals about appropriate practice guidelines, raise awareness of the disorder, and ensure that individuals looking for treatment find the necessary resources. In order to carry out the mission of the organization, multiple direct–toconsumer strategies have been utilized including educational programming via Web sites, conferences, and newsletters. Additionally, various awareness campaign strategies have been implemented including collaboration with a public relations group to increase media coverage, the development and utilization of a Speakers Bureau, the establishment of OCD Awareness Week, and the dissemination of information to schools using the “OCD in the Classroom” program. Finally, in order to address the difficulties that patients encounter finding and accessing effective treatment resources, the IOCDF utilizes support group and treatment provider databases and also offers an intensive training program regarding the nature and treatment of OCD to professionals via Behavior Therapy Training Institutes. The remainder of this paper reviews the direct-to-consumer strategies and tactics used by the IOCDF to improve access to empirically supported effective treatment.
educational programming In general, the educational programming developed by the IOCDF targets individuals with OCD and their families with the goal of helping them learn more about the nature of OCD and effective treatment. Annual Conference “Taken as a whole, dissemination and implementation efforts tend to be characterized as social, reciprocal, and dynamic processes” (Becker, Nakamura, Young, & Chorpita, 2009). The IOCDF's Annual Conference is an excellent example of a “social, reciprocal, and dynamic” process. Started in 1993, the annual conference is held in different cities across the country, rotating from the West Coast, to the Midwest, to the East Coast. Unlike other purely professionally attended conferences, this conference is a mix of researchers, therapists, individuals with OCD, and their family members. In fact, the breakdown between these groups is nearly equal: a third of the attendees are professionals, a third are individuals with OCD, and a third are family members. This is a unique opportunity for individuals to learn more about the basics of OCD as well as recent advances that have been made in the understanding of the disorder. In addition to educating attendees about first-line treatment options (i.e., SSRIs and ERP), the conference provides an opportunity to discuss cutting-edge interventions for those with treatment refractory symptoms. The annual conference is an ideal forum not only for mental health professionals to educate consumers but also for consumers to give feedback to professionals. For example, though ERP has been shown to be an effective treatment for OCD, it is also associated with high dropout rates and poor treatment compliance (Abramowitz, 2006). It is hoped that feedback received from a dialogue between professionals and consumers may increase the likelihood of individuals trying ERP once introduced to it. This model of dissemination has been effective in reaching a larger audience over the years, with the conference growing from 9 presentations and fewer than 200 attendees in 1993 to over 100 presentations and over 1,000 attendees in recent years. In addition, 50–60% of attendees at the last two conferences have been first-time attendees. Web Site In another attempt to address the lack of information and education available about OCD, the IOCDF has, since its inception, been a resource for psychoeducational materials for individuals with OCD, their families, and professionals. While this information was historically mailed as “information packets” to
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can include personal stories of triumph, such as an individual suffering with the disorder who then accessed proper treatment and was able to move forward in his or her life, articles from therapists about treatment for comorbid conditions or new information about the different subtypes of OCD, and research updates regarding novel treatment options for refractory OCD, for example. Many of the research updates are summaries from IOCDF grant-funded projects. As money for these grants is contributed from IOCDF members, the newsletter offers consumers the opportunity to learn about the research advances made possible by their donations. In this way, individuals who might have struggled with OCD or have seen a family member struggle with OCD are able to contribute to the fight against the debilitating nature of the disorder. It must be noted, however, that providing the information itself is not enough. Results of one study showed that 14% of Americans have a below-basic ability to read and comprehend health information, and an additional 22% had only a basic ability (Kutner, Greenberg, Jin, & Paulsen, 2006). Other studies have shown that as many as 50% of Americans cannot proficiently read above an eighth-grade level (Kirsch, Jungeblut, Jenkins, & Kolstad, 2002). Thus, even with the best of intentions, when trying to educate individuals about the nature of OCD and effective treatment options, we can fall short if we do not attend to these sobering statistics. Fortunately, the IOCDF has a certified health education specialist on staff who reviews all psychoeducation posted on the Web site to ensure that as wide an audience as possible is able to access the information (see Table 1 for health literacy guidelines used by the IOCDF).
those requesting them, our society is increasingly accessing information via the Internet. Therefore, having an effective, easy-to-use Web site has become vitally important. Psychoeducation provided on the IOCDF Web site (www.ocfoundation.org) starts with a description of the nature of OCD symptoms— including extensive information about all of the subtypes of OCD and obsessive–compulsive spectrum disorders—as well as information about differential diagnosis and comorbidities. First-line treatment strategies (SSRIs, ERP), interventions for treatment refractory symptoms (e.g., intensive treatment programs, medication augmentation options, neurosurgery techniques), and adjunctive treatment strategies for OCD (e.g., family therapy, acceptance and commitment therapy) are also covered. All of the psychoeducation posted on the Web site is written by members of the IOCDF's Scientific Advisory Board (SAB), all of whom are nationally and internationally recognized leaders in the field of OCD. SAB membership is determined by a Nominating Committee— comprised of senior members of the SAB—to ensure that researchers and clinicians seen as leaders in the OCD community are included. In recent years, the unique needs of individuals and family members struggling with hoarding have become more apparent. When the nature of the inquiries received at the IOCDF national headquarters were tracked, it was discovered that one in five were concerning hoarding in particular. As a result, the IOCDF collaborated with Drs. Randy Frost and Gail Steketee—two of the leading researchers in the area of hoarding—to develop a Web site devoted entirely to hoarding (www.helpforhoarding.org). Following the recognition of a similar need, the IOCDF is now working with members of the SAB who specialize in the area of pediatric OCD with the goal of developing a Web site devoted to education about OCD as it relates to children and teens. Finally, in another attempt to access Internet users directly, the IOCDF utilizes social networking sites such as Facebook, Twitter, and YouTube. Event announcements and the posting of new psychoeducational material on the Web site are automatically posted on Facebook and Twitter accounts. Involvement in social networking sites has allowed for a direct dialogue between the IOCDF and its members, as well as the creation of a medium through which members can connect with each other. With a Facebook account only 1 year old, the IOCDF has already attracted over 2,500 followers.
raising awareness While the IOCDF attempts to improve the understanding of what OCD is and what the effecive treatments are through its educational programming—attempting to clear away obstacles inhibiting individuals from accessing effective care—the awareness-raising programs at the IOCDF were developed with the general public in mind. What are the symptoms of OCD? How prevalent is it? How does OCD impact a person's life? Through improved education and increased awareness, it is also hoped that the stigma of having OCD (or any mental disorder) might be diminished.
Newsletter A third educational program employed by the IOCDF is a quarterly newsletter mailed to its membership. Articles featured in the newsletter
Media Campaigns In 2009, the IOCDF hired a public and media relations group—Teak Media Communications— to help increase the number of stories about OCD
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Table 1
International OCD Foundation Health Literacy Guidelines Formatting • Keep the density of text as light as possible. • Use bullets • Use short sentences • Keep paragraph length to a minimum • Use plenty of white space. Text-heavy pieces are intimidating to low-literacy readers; they may not even attempt to read the information. • Use an appropriate font. • Font size of 12 to 14. Space restrictions can be a challenge when covering a large topic. However, low-literacy readers, especially older readers, have difficulty reading small font. • Bold or underlining is good. Italics are not good. • Keep unconventional fonts to a minimum. Unusual fonts will appear to low-literacy readers as strange and will hurt comprehension. • Use contrast. Do not use a light font on a light background or a dark font on a dark background. • Don't get fancy with design. Avoid layouts that use watermarks or place text over images and design elements in the background. Anything that distracts the reader or makes the font more difficult to see is a problem for low-literacy readers. • Use visuals. For people with limited reading abilities, a picture really does speak a thousand words. When you can, try to use images or diagrams that convey a message. However, do not use a picture that is not related to the content. Don't use stock images to fill space unless they have some kind of meaning. Using Plain Language • Use simple, common terms and descriptions. The federal government has an entire Web site dedicated to this at http://ww.plainlanguage.gov. Here is one example from their Web site: Before The Dietary Guidelines for Americans recommends a half hour or more of moderate physical activity on most days, preferably every day. The activity can include brisk walking, calisthenics, home care, gardening, moderate sports exercise, and dancing. After Do at least 30 minutes of exercise, like brisk walking, most days of the week. • Use consumer math. Reading is not just about prose. Studies have shown that many people also have problems understanding quantitative terms. Instead of using “80%,” it might make more sense to say “four out of five people.” Instead of saying “18 million people, try using “about the same number of people who live in Florida.” • Watch your word choices. As a professional or someone who knows a lot about a topic, you may take some of the lingo you use for granted. Instead of “anxiety,” consider using “very nervous.” Instead of “support,” use “help.” Instead of “medications,” use “meds” or “medicines.” • Check the readability level. As mentioned before, about half of all Americans have problems reading above a fifth-grade level. While grade level should never be the only criteria used, it is a good starting point. We recommend using the FRY Readability Scale, which can be easily found online.
in local and national media. In 2 years, the IOCDF has had over 100 media hits, several of these in high-visibility outlets including ABC Nightline, CNN, Associated Press, USA Today, Wall Street Journal, New York Times, Washington Post, Chicago Tribune, and National Public Radio. Increased presence in the media also allows the IOCDF to help “manage the message” about the nature of OCD and effective treatments for the disorder. For example, in media interviews an attempt is made to distinguish the personality traits “obsessive” and “compulsive” from what constitutes OCD. The goal is to underscore that OCD is an anxiety disorder and not a personality quirk that an individual can just stop doing. “Managing the message” also includes a discussion of the first-line treatments for OCD in an attempt to increase the likelihood that an individual seeking treatment will find the most effective intervention. Speakers Bureau In 2008, the IOCDF launched its Speakers Bureau, the second awareness-raising initiative. The goal was to have members of the Speakers Bureau work handin-hand with efforts to increase media coverage of OCD. The Speakers Bureau includes both individuals with OCD and top OCD researchers and clinicians. Individuals with OCD are able to speak firsthand about the challenges of this disorder, and how treatment has allowed them to resume their lives more normally. Clinical and research experts are then able to speak to advances in research and effective treatments. Oversight of the Speakers Bureau is shared by the senior management of the IOCDF national office, Teak Media, and the IOCDF national spokesperson, Jeff Bell, a 20-year veteran of radio and television news. All new Speakers Bureau members are reviewed via an application and submission of previous media appearances. Once involved in the Speakers Bureau, all members attend media training annually, led by Teak Media. OCD Awareness Week The third awareness-raising strategy was the launching of OCD Awareness Week, held each year during the second week of October. In 2010, two-dozen activities were planned in 13 different states across the country. These activities included information booths, lectures, storytelling events, and day-long conferences. Individuals sent letters-to-the-editor that were printed in local newspapers, and Facebook fans donated their status updates. The week was capped with a national storytelling event that was video streamed live on the Internet. Groups around the country were asked to host “viewing parties” and almost 500 unique hits were tracked during the
ocd in the nonprofit sector broadcast. Storytellers shared different perspectives, such as their personal struggle with OCD, what it was like to treat someone with OCD, and the experience of one mother fighting to help her son in his battle with OCD. OCD in the Classroom The final awareness-raising initiative is aimed at pediatric OCD, and raising awareness among school personnel in particular. In 2003, the IOCDF launched its “OCD in the Classroom” kit, a multimedia presentation that is used to educate school personnel about identifying OCD symptoms in students and the steps to take to help ensure that parents are connected to proper resources. On an informal survey conducted on the IOCDF Web site in 2010, 160 out of 166 respondents (96%) reported that OCD symptoms affected a child's school performance. These difficulties ranged from lowered grades (endorsed by 58% of respondents) to school absences (45%) to trouble with teachers (38%). With this information in mind, a panel of leading experts in pediatric OCD is in the process of updating the psychoeducation material included in this kit, and this information will be accessible on the pediatric Web site in the upcoming year.
accessing and creating resources Though education and raising awareness can go a long way in improving consumers’ knowledge about what treatment to seek, once armed with this knowledge difficulties are often encountered finding an appropriately trained provider. Indeed, “A closer examination of the help seeking attitudes revealed that the most common reason for not seeking treatment was ‘not knowing where to get help,’ which was endorsed by almost 40% of those who had never been treated” (Goodwin et al., 2002, p. 147). Treatment Provider and Support Group Databases The IOCDF has attempted to address this problem in two ways. First, a treatment provider database has been developed on which providers describe their background, training, and expertise in treating OCD patients. This resource on the IOCDF Web site increases the likelihood that consumers will find a therapist trained in first-line treatments, relative to accessing a general provider listing or a list provided by their insurance company. In addition, the IOCDF maintains a database of both in-person and online support groups. The opportunity to interact with someone experiencing similar symptoms may allow individuals to feel less alone in their struggle, which in turn may influence their willingness to seek help. Online support groups provide a forum to anonymously disclose symptoms, learn
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that other people experience similar thoughts and behaviors, and share information about treatment opportunities or experiences. Behavior Therapy Training Institutes As noted previously, though SSRIs and CBT are recognized as first-line treatments for OCD (American Psychiatric Association, 2007), these treatments are often not prescribed correctly or at all (Blanco et al., 2006). As a result, the IOCDF developed the Behavior Therapy Training Institute (BTTI). One goal of the BTTI is to increase awareness among mental health professionals regarding accurate diagnostic strategies and effective treatments for OCD. The second goal is to provide therapists with an opportunity—through education, supervision and experience—to utilize effective treatments for OCD. In doing so, it is hoped that when an individual with OCD does seek treatment, he or she will have an increased likelihood of accessing a mental health professional who will use first-line treatments. The BTTI is a 3-day training that provides an overview of OCD symptoms and effective assessment strategies, an introduction to first-line treatments, a review of applications to a child and adolescent population, an overview of OCD spectrum disorders, and strategies for addressing symptoms that are treatment resistant. The third day of the training consists of small-group supervision by a faculty member. The majority of the faculty members participating in the BTTI are chosen from the IOCDF's Scientific Advisory Board, a group that was instrumental in creating the BTTI curriculum. Following the 3-day training, three phone consultations are planned as follow-up supervision for all attendees. As an example of the interplay between consumers and mental health professionals, the IOCDF has recently launched a scholarship program for the BTTI. This is a collaboration between the mother of a child diagnosed with OCD and the IOCDF. This parent was frustrated by not knowing what had afflicted her daughter when the symptoms first appeared. She took her daughter to numerous mental health professionals who did not accurately diagnose the child. Even when the proper diagnosis was eventually assigned, her daughter initially received ineffective treatment. Although this child finally received effective treatment, the mother was unhappy about her child's extended suffering, which had in turn affected her entire family. In addition, the family lives in a rural part of the country where finding a CBT therapist is hard enough, let alone a pediatric OCD specialist. As a part of the collaboration between this parent and
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the IOCDF, qualifying pediatric mental health therapists seeking specialized training in OCD treatment are able to access funding through the IOCDF to attend the BTTI. The intention is to begin funding those parts of the country that are currently the most underserved.
Summary The delay between developing symptoms of OCD and accessing effective treatment is significant. Barriers to proper care include lack of education, poor awareness, shame and guilt, and too few providers trained in effective, empirically validated treatments. Using various direct-to-consumer strategies in the context of a nonprofit mental health organization allows for multiple avenues and options to help individuals overcome these obstacles. Educational programs including Web sites, conferences, newsletters, and trainings, in combination with public relations and media access, help to increase awareness of the disorder. The development and maintenance of support-group databases, publishing “personal stories” about individuals struggling with the disorder in a newsletter available to the community, and opportunities to meet others with the same diagnosis at a conference can each help diminish the shame, guilt, and stigma associated with having a mental disorder and the resulting unwillingness to seek treatment. Finally, with a limited number of professionals trained to utilize effective treatment for OCD, providing information to clinicians via training opportunities and to consumers through a treatment provider database can help increase awareness and access to those needing these resources. Overall, when utilizing direct-toconsumer marketing strategies, novel partnerships and collaborations can develop to help dramatically improve access to effective care. References Abramowitz, J. S. (2006). The psychological treatment of obsessive compulsive disorder. Canadian Journal of Psychiatry, 51(7), 407–416. American Psychiatric Association (2007). Practice guidelines for the treatment of patients with obsessive–compulsive disorder. Arlington, VA: Author. Becker, K. D., Nakamura, B. J., Young, J., & Chorpita, B. F. (2009). What better place than here? What better time than now? ABCT's burgeoning role in the dissemination
and implementation of evidence-based practices. The Behavior Therapist, 32, 89–96. Belloch, A., del Valle, G., Morillo, C., Carrio, C., & Cabedo, E. (2009). To seek advice or not to seek advice about the problem: The help-seeking dilemma for obsessive–compulsive disorder. Social Psychiatry and Psychiatric Epidemiology, 44(4), 257–264. Blanco, C., Olfson, M., Stein, D. J., Blair-Simpson, H., Gameroff, M. J., & Narrow, W. H. (2006). Treatment of obsessive-compulsive disorder by U.S. psychiatrists. Journal of Clinical Psychiatry, 67, 946–951. Eisen, J. L., Mancebo, M. A., Pinto, A., Coles, M. E., Pagano, M. E., Stout, R., & Rasumussen, S. A. (2006). Impact of obsessive-compulsive disorder on quality of life. Comprehensive Psychiatry, 47, 270–275. Goodwin, R., Koenen, K. C., Hellman, F., Guardino, M., & Stuening, E. (2002). Helpseeking and access to mental health treatment for obsessive-compulsive disorder. Acta Psychiatrica Scandinavica, 106, 143–149. Hollander, E., Stein, D. J., Kwon, J. H., Rowland, C., Wong, C. M., Broatch, J., & Himelein, C. (1997). Psychosocial function and economic costs of obsessive–compulsive disorder. CNS Spectrums, 2(10), 16–25. Kessler, R. C., Chiu, W. T., Demler, O., & Walters, E. E. (2005). Prevalence, severity, and comorbidity of twelvemonth DSMIV disorders in the National Comorbidity Survey Replication (NCSR). Archives of General Psychiatry, 62(6), 617–627. Kirsch, I. S., Jungeblut, A., Jenkins, L., & Kolstad, A. (2002). Adult literacy in America: A first look at the findings of the national adult literacy survey (3rd ed.). Washington, DC: U.S. Department of Education. Kutner, M., Greenberg, E., Jin, Y., & Paulsen, C. (2006). The health literacy of America's adults: Results from the 2003 National Assessment of Adult Literacy (NCES 2006–483). Washington, DC: U. S. Department of Education, National Center for Education Statistics. Mancebo, M. C., Greenberg, B., Grant, J. E., Pinto, A., Eisen, J. L., Dyck, I., & Rassumussen, S. A. (2008). Correlates of occupational disability in a clinical sample of obsessive– compulsive disorder. Comprehensive Psychiatry, 49, 43–50. March, J., & Benton, C. (2007). Talking Back to OCD (pp.10–11). The Guilford Press. Mayerovitch, J. I., Galbaud du Fort, G., Kakuma, R., Bland, R. C., Newman, S. C., & Pinard, G. (2003). Treatment seeking for obsessive–compulsive disorder: Role of obsessive–compulsive disorder symptoms and comorbid psychiatric diagnoses. Comprehensive Psychiatry, 44(2), 162–168. Ruscio, A. M., Stein, D. J., Chiu, W. T., & Kessler, R. C. (2010). The epidemiology of obsessive–compulsive disorder in the National Comorbidity Survey Replication. Molecular Psychiatry, 15, 53–63.
R E C E I V E D : May 3, 2010 A C C E P T E D : May 31, 2011 Available online 12 June 2011
Behavior Therapy 43 (2012) 251 – 256
www.elsevier.com/locate/bt
Using Direct-to-Consumer Marketing Strategies With Obsessive-Compulsive Disorder in the Nonprofit Sector Jeff Szymanski International OCD Foundation
Three to four million individuals struggle with obsessive– compulsive disorder (OCD) in the United States at any given time. OCD can be a debilitating disorder associated with significant quality–of-life and occupational impairment. First-line treatments for OCD (selective serotonin reuptake inhibitors and exposure and response prevention therapy) have been shown to be effective; yet, many individuals suffering from OCD experience multiple barriers to accessing these treatments. In fact, it can take as many as 17 years from onset of symptoms to effective treatment. Given the need to increase access to and utilization of effective treatments, direct-to-consumer marketing in the context of OCD appears crucial. The International OCD Foundation (formerly the Obsessive Compulsive Foundation) was established as a nonprofit organization with a mission to educate the public and mental health professionals about appropriate practice guidelines, raise awareness of the disorder, and ensure that individuals looking for treatment find the necessary resources. This paper reviews the obstacles those struggling with OCD face in their attempts to alleviate suffering, as well as the direct-to-consumer strategies and tactics used by the International OCD Foundation to improve access to empirically supported, effective treatment.
Keywords: evidence based treatments; direct-to-consumer marketing; OCD
APPROXIMATELY 2 TO 3 MILLION ADULTS in the United States have obsessive-compulsive disorder or OCD (Kessler, Chiu, Demler, & Walters, 2005; Ruscio, Stein, Chiu, & Kessler, 2010). In addition, another Address correspondence to Jeff Szymanski, Ph.D., Executive Director, International OCD Foundation, Inc., 112 Water Street, #501, Boston, MA, 02109; e-mail: [email protected]. 0005-7894/43/251-256/$1.00/0 © 2011 Association for Behavioral and Cognitive Therapies. Published by Elsevier Ltd. All rights reserved.
500,000 children and adolescents may be suffering from OCD (March & Benton, 2007). OCD can be debilitating and, as symptoms of the disorder increase in severity, a comparable drop in quality of life occurs (Eisen et al., 2006). Individuals with OCD have also shown significant occupational impairment, with one sample reporting that 38% of individuals with an OCD diagnosis were unable to work due to psychiatric symptoms (Mancebo et al., 2008). Given the body of literature supporting the efficacy of selective serotonin reuptake inhibitors (SSRIs) and exposure and response prevention (ERP) in the treatment of OCD, both are recommended as first-line treatments for the disorder (American Psychiatric Association, 2007). However, many individuals suffering from OCD experience multiple barriers to accessing these treatments (Belloch, del Valle, Morillo, Carrio, & Cabedo, 2009; Blanco et al., 2006). In fact, research suggests that it can take as many as 17 years from onset of symptoms to effective treatment (Hollander et al., 1997), whereas other studies have found that as many as 40% of individuals qualifying for an OCD diagnosis have never received any treatment at all (Goodwin, Koenen, Hellman, Guardino, & Stuening, 2002). What accounts for this treatment gap? Despite increased media coverage of OCD in newspapers, magazines, movies, and television, many individuals continue to be unaware of the symptoms of OCD. An individual experiencing OCD symptoms might acknowledge that something is wrong, but at the same time lack sufficient knowledge or resources to correctly label what he or she is experiencing (Belloch et al., 2009). Belloch and colleagues found that only one participant in their study sought treatment because he or she had information about OCD. Indeed, this lack of education about OCD continues to create a stumbling block for those needing help.
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Alternatively, some individuals with OCD symptoms are aware of their diagnosis but decide not to seek treatment. Reasons for this decision include hoping the symptoms will resolve without treatment, worry about being labeled “mentally ill,” and feelings of shame about the content of obsessive thoughts (Belloch et al., 2009). In one study, only 36% of participants consulted a doctor or other professional about their struggle with OCD symptoms (Mayerovitch et al., 2003). Finally, accessing effective treatment and resources provides another set of barriers. Though SSRIs and cognitive behavior therapy (CBT; specifically ERP) are acknowledged as first-line treatments (American Psychiatric Association, 2007), one study found that only 65% of patients with OCD were receiving SSRIs, and just 39% of patients were being prescribed the medication at an effective dose (Blanco et al., 2006). In this same sample, 77% of patients were in psychotherapy for their OCD, but only 7.5% were receiving CBT. Thus, there appears to be a significant need to educate both the public and the mental health field about empirically supported treatments for OCD.
Direct-to-Consumer Marketing Strategies Given this context, direct-to-consumer marketing strategies appear crucial. The International OCD Foundation (IOCDF; formerly the Obsessive Compulsive Foundation) was established as a nonprofit organization with a mission to educate the public and mental health professionals about appropriate practice guidelines, raise awareness of the disorder, and ensure that individuals looking for treatment find the necessary resources. In order to carry out the mission of the organization, multiple direct–toconsumer strategies have been utilized including educational programming via Web sites, conferences, and newsletters. Additionally, various awareness campaign strategies have been implemented including collaboration with a public relations group to increase media coverage, the development and utilization of a Speakers Bureau, the establishment of OCD Awareness Week, and the dissemination of information to schools using the “OCD in the Classroom” program. Finally, in order to address the difficulties that patients encounter finding and accessing effective treatment resources, the IOCDF utilizes support group and treatment provider databases and also offers an intensive training program regarding the nature and treatment of OCD to professionals via Behavior Therapy Training Institutes. The remainder of this paper reviews the direct-to-consumer strategies and tactics used by the IOCDF to improve access to empirically supported effective treatment.
educational programming In general, the educational programming developed by the IOCDF targets individuals with OCD and their families with the goal of helping them learn more about the nature of OCD and effective treatment. Annual Conference “Taken as a whole, dissemination and implementation efforts tend to be characterized as social, reciprocal, and dynamic processes” (Becker, Nakamura, Young, & Chorpita, 2009). The IOCDF's Annual Conference is an excellent example of a “social, reciprocal, and dynamic” process. Started in 1993, the annual conference is held in different cities across the country, rotating from the West Coast, to the Midwest, to the East Coast. Unlike other purely professionally attended conferences, this conference is a mix of researchers, therapists, individuals with OCD, and their family members. In fact, the breakdown between these groups is nearly equal: a third of the attendees are professionals, a third are individuals with OCD, and a third are family members. This is a unique opportunity for individuals to learn more about the basics of OCD as well as recent advances that have been made in the understanding of the disorder. In addition to educating attendees about first-line treatment options (i.e., SSRIs and ERP), the conference provides an opportunity to discuss cutting-edge interventions for those with treatment refractory symptoms. The annual conference is an ideal forum not only for mental health professionals to educate consumers but also for consumers to give feedback to professionals. For example, though ERP has been shown to be an effective treatment for OCD, it is also associated with high dropout rates and poor treatment compliance (Abramowitz, 2006). It is hoped that feedback received from a dialogue between professionals and consumers may increase the likelihood of individuals trying ERP once introduced to it. This model of dissemination has been effective in reaching a larger audience over the years, with the conference growing from 9 presentations and fewer than 200 attendees in 1993 to over 100 presentations and over 1,000 attendees in recent years. In addition, 50–60% of attendees at the last two conferences have been first-time attendees. Web Site In another attempt to address the lack of information and education available about OCD, the IOCDF has, since its inception, been a resource for psychoeducational materials for individuals with OCD, their families, and professionals. While this information was historically mailed as “information packets” to
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can include personal stories of triumph, such as an individual suffering with the disorder who then accessed proper treatment and was able to move forward in his or her life, articles from therapists about treatment for comorbid conditions or new information about the different subtypes of OCD, and research updates regarding novel treatment options for refractory OCD, for example. Many of the research updates are summaries from IOCDF grant-funded projects. As money for these grants is contributed from IOCDF members, the newsletter offers consumers the opportunity to learn about the research advances made possible by their donations. In this way, individuals who might have struggled with OCD or have seen a family member struggle with OCD are able to contribute to the fight against the debilitating nature of the disorder. It must be noted, however, that providing the information itself is not enough. Results of one study showed that 14% of Americans have a below-basic ability to read and comprehend health information, and an additional 22% had only a basic ability (Kutner, Greenberg, Jin, & Paulsen, 2006). Other studies have shown that as many as 50% of Americans cannot proficiently read above an eighth-grade level (Kirsch, Jungeblut, Jenkins, & Kolstad, 2002). Thus, even with the best of intentions, when trying to educate individuals about the nature of OCD and effective treatment options, we can fall short if we do not attend to these sobering statistics. Fortunately, the IOCDF has a certified health education specialist on staff who reviews all psychoeducation posted on the Web site to ensure that as wide an audience as possible is able to access the information (see Table 1 for health literacy guidelines used by the IOCDF).
those requesting them, our society is increasingly accessing information via the Internet. Therefore, having an effective, easy-to-use Web site has become vitally important. Psychoeducation provided on the IOCDF Web site (www.ocfoundation.org) starts with a description of the nature of OCD symptoms— including extensive information about all of the subtypes of OCD and obsessive–compulsive spectrum disorders—as well as information about differential diagnosis and comorbidities. First-line treatment strategies (SSRIs, ERP), interventions for treatment refractory symptoms (e.g., intensive treatment programs, medication augmentation options, neurosurgery techniques), and adjunctive treatment strategies for OCD (e.g., family therapy, acceptance and commitment therapy) are also covered. All of the psychoeducation posted on the Web site is written by members of the IOCDF's Scientific Advisory Board (SAB), all of whom are nationally and internationally recognized leaders in the field of OCD. SAB membership is determined by a Nominating Committee— comprised of senior members of the SAB—to ensure that researchers and clinicians seen as leaders in the OCD community are included. In recent years, the unique needs of individuals and family members struggling with hoarding have become more apparent. When the nature of the inquiries received at the IOCDF national headquarters were tracked, it was discovered that one in five were concerning hoarding in particular. As a result, the IOCDF collaborated with Drs. Randy Frost and Gail Steketee—two of the leading researchers in the area of hoarding—to develop a Web site devoted entirely to hoarding (www.helpforhoarding.org). Following the recognition of a similar need, the IOCDF is now working with members of the SAB who specialize in the area of pediatric OCD with the goal of developing a Web site devoted to education about OCD as it relates to children and teens. Finally, in another attempt to access Internet users directly, the IOCDF utilizes social networking sites such as Facebook, Twitter, and YouTube. Event announcements and the posting of new psychoeducational material on the Web site are automatically posted on Facebook and Twitter accounts. Involvement in social networking sites has allowed for a direct dialogue between the IOCDF and its members, as well as the creation of a medium through which members can connect with each other. With a Facebook account only 1 year old, the IOCDF has already attracted over 2,500 followers.
raising awareness While the IOCDF attempts to improve the understanding of what OCD is and what the effecive treatments are through its educational programming—attempting to clear away obstacles inhibiting individuals from accessing effective care—the awareness-raising programs at the IOCDF were developed with the general public in mind. What are the symptoms of OCD? How prevalent is it? How does OCD impact a person's life? Through improved education and increased awareness, it is also hoped that the stigma of having OCD (or any mental disorder) might be diminished.
Newsletter A third educational program employed by the IOCDF is a quarterly newsletter mailed to its membership. Articles featured in the newsletter
Media Campaigns In 2009, the IOCDF hired a public and media relations group—Teak Media Communications— to help increase the number of stories about OCD
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Table 1
International OCD Foundation Health Literacy Guidelines Formatting • Keep the density of text as light as possible. • Use bullets • Use short sentences • Keep paragraph length to a minimum • Use plenty of white space. Text-heavy pieces are intimidating to low-literacy readers; they may not even attempt to read the information. • Use an appropriate font. • Font size of 12 to 14. Space restrictions can be a challenge when covering a large topic. However, low-literacy readers, especially older readers, have difficulty reading small font. • Bold or underlining is good. Italics are not good. • Keep unconventional fonts to a minimum. Unusual fonts will appear to low-literacy readers as strange and will hurt comprehension. • Use contrast. Do not use a light font on a light background or a dark font on a dark background. • Don't get fancy with design. Avoid layouts that use watermarks or place text over images and design elements in the background. Anything that distracts the reader or makes the font more difficult to see is a problem for low-literacy readers. • Use visuals. For people with limited reading abilities, a picture really does speak a thousand words. When you can, try to use images or diagrams that convey a message. However, do not use a picture that is not related to the content. Don't use stock images to fill space unless they have some kind of meaning. Using Plain Language • Use simple, common terms and descriptions. The federal government has an entire Web site dedicated to this at http://ww.plainlanguage.gov. Here is one example from their Web site: Before The Dietary Guidelines for Americans recommends a half hour or more of moderate physical activity on most days, preferably every day. The activity can include brisk walking, calisthenics, home care, gardening, moderate sports exercise, and dancing. After Do at least 30 minutes of exercise, like brisk walking, most days of the week. • Use consumer math. Reading is not just about prose. Studies have shown that many people also have problems understanding quantitative terms. Instead of using “80%,” it might make more sense to say “four out of five people.” Instead of saying “18 million people, try using “about the same number of people who live in Florida.” • Watch your word choices. As a professional or someone who knows a lot about a topic, you may take some of the lingo you use for granted. Instead of “anxiety,” consider using “very nervous.” Instead of “support,” use “help.” Instead of “medications,” use “meds” or “medicines.” • Check the readability level. As mentioned before, about half of all Americans have problems reading above a fifth-grade level. While grade level should never be the only criteria used, it is a good starting point. We recommend using the FRY Readability Scale, which can be easily found online.
in local and national media. In 2 years, the IOCDF has had over 100 media hits, several of these in high-visibility outlets including ABC Nightline, CNN, Associated Press, USA Today, Wall Street Journal, New York Times, Washington Post, Chicago Tribune, and National Public Radio. Increased presence in the media also allows the IOCDF to help “manage the message” about the nature of OCD and effective treatments for the disorder. For example, in media interviews an attempt is made to distinguish the personality traits “obsessive” and “compulsive” from what constitutes OCD. The goal is to underscore that OCD is an anxiety disorder and not a personality quirk that an individual can just stop doing. “Managing the message” also includes a discussion of the first-line treatments for OCD in an attempt to increase the likelihood that an individual seeking treatment will find the most effective intervention. Speakers Bureau In 2008, the IOCDF launched its Speakers Bureau, the second awareness-raising initiative. The goal was to have members of the Speakers Bureau work handin-hand with efforts to increase media coverage of OCD. The Speakers Bureau includes both individuals with OCD and top OCD researchers and clinicians. Individuals with OCD are able to speak firsthand about the challenges of this disorder, and how treatment has allowed them to resume their lives more normally. Clinical and research experts are then able to speak to advances in research and effective treatments. Oversight of the Speakers Bureau is shared by the senior management of the IOCDF national office, Teak Media, and the IOCDF national spokesperson, Jeff Bell, a 20-year veteran of radio and television news. All new Speakers Bureau members are reviewed via an application and submission of previous media appearances. Once involved in the Speakers Bureau, all members attend media training annually, led by Teak Media. OCD Awareness Week The third awareness-raising strategy was the launching of OCD Awareness Week, held each year during the second week of October. In 2010, two-dozen activities were planned in 13 different states across the country. These activities included information booths, lectures, storytelling events, and day-long conferences. Individuals sent letters-to-the-editor that were printed in local newspapers, and Facebook fans donated their status updates. The week was capped with a national storytelling event that was video streamed live on the Internet. Groups around the country were asked to host “viewing parties” and almost 500 unique hits were tracked during the
ocd in the nonprofit sector broadcast. Storytellers shared different perspectives, such as their personal struggle with OCD, what it was like to treat someone with OCD, and the experience of one mother fighting to help her son in his battle with OCD. OCD in the Classroom The final awareness-raising initiative is aimed at pediatric OCD, and raising awareness among school personnel in particular. In 2003, the IOCDF launched its “OCD in the Classroom” kit, a multimedia presentation that is used to educate school personnel about identifying OCD symptoms in students and the steps to take to help ensure that parents are connected to proper resources. On an informal survey conducted on the IOCDF Web site in 2010, 160 out of 166 respondents (96%) reported that OCD symptoms affected a child's school performance. These difficulties ranged from lowered grades (endorsed by 58% of respondents) to school absences (45%) to trouble with teachers (38%). With this information in mind, a panel of leading experts in pediatric OCD is in the process of updating the psychoeducation material included in this kit, and this information will be accessible on the pediatric Web site in the upcoming year.
accessing and creating resources Though education and raising awareness can go a long way in improving consumers’ knowledge about what treatment to seek, once armed with this knowledge difficulties are often encountered finding an appropriately trained provider. Indeed, “A closer examination of the help seeking attitudes revealed that the most common reason for not seeking treatment was ‘not knowing where to get help,’ which was endorsed by almost 40% of those who had never been treated” (Goodwin et al., 2002, p. 147). Treatment Provider and Support Group Databases The IOCDF has attempted to address this problem in two ways. First, a treatment provider database has been developed on which providers describe their background, training, and expertise in treating OCD patients. This resource on the IOCDF Web site increases the likelihood that consumers will find a therapist trained in first-line treatments, relative to accessing a general provider listing or a list provided by their insurance company. In addition, the IOCDF maintains a database of both in-person and online support groups. The opportunity to interact with someone experiencing similar symptoms may allow individuals to feel less alone in their struggle, which in turn may influence their willingness to seek help. Online support groups provide a forum to anonymously disclose symptoms, learn
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that other people experience similar thoughts and behaviors, and share information about treatment opportunities or experiences. Behavior Therapy Training Institutes As noted previously, though SSRIs and CBT are recognized as first-line treatments for OCD (American Psychiatric Association, 2007), these treatments are often not prescribed correctly or at all (Blanco et al., 2006). As a result, the IOCDF developed the Behavior Therapy Training Institute (BTTI). One goal of the BTTI is to increase awareness among mental health professionals regarding accurate diagnostic strategies and effective treatments for OCD. The second goal is to provide therapists with an opportunity—through education, supervision and experience—to utilize effective treatments for OCD. In doing so, it is hoped that when an individual with OCD does seek treatment, he or she will have an increased likelihood of accessing a mental health professional who will use first-line treatments. The BTTI is a 3-day training that provides an overview of OCD symptoms and effective assessment strategies, an introduction to first-line treatments, a review of applications to a child and adolescent population, an overview of OCD spectrum disorders, and strategies for addressing symptoms that are treatment resistant. The third day of the training consists of small-group supervision by a faculty member. The majority of the faculty members participating in the BTTI are chosen from the IOCDF's Scientific Advisory Board, a group that was instrumental in creating the BTTI curriculum. Following the 3-day training, three phone consultations are planned as follow-up supervision for all attendees. As an example of the interplay between consumers and mental health professionals, the IOCDF has recently launched a scholarship program for the BTTI. This is a collaboration between the mother of a child diagnosed with OCD and the IOCDF. This parent was frustrated by not knowing what had afflicted her daughter when the symptoms first appeared. She took her daughter to numerous mental health professionals who did not accurately diagnose the child. Even when the proper diagnosis was eventually assigned, her daughter initially received ineffective treatment. Although this child finally received effective treatment, the mother was unhappy about her child's extended suffering, which had in turn affected her entire family. In addition, the family lives in a rural part of the country where finding a CBT therapist is hard enough, let alone a pediatric OCD specialist. As a part of the collaboration between this parent and
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the IOCDF, qualifying pediatric mental health therapists seeking specialized training in OCD treatment are able to access funding through the IOCDF to attend the BTTI. The intention is to begin funding those parts of the country that are currently the most underserved.
Summary The delay between developing symptoms of OCD and accessing effective treatment is significant. Barriers to proper care include lack of education, poor awareness, shame and guilt, and too few providers trained in effective, empirically validated treatments. Using various direct-to-consumer strategies in the context of a nonprofit mental health organization allows for multiple avenues and options to help individuals overcome these obstacles. Educational programs including Web sites, conferences, newsletters, and trainings, in combination with public relations and media access, help to increase awareness of the disorder. The development and maintenance of support-group databases, publishing “personal stories” about individuals struggling with the disorder in a newsletter available to the community, and opportunities to meet others with the same diagnosis at a conference can each help diminish the shame, guilt, and stigma associated with having a mental disorder and the resulting unwillingness to seek treatment. Finally, with a limited number of professionals trained to utilize effective treatment for OCD, providing information to clinicians via training opportunities and to consumers through a treatment provider database can help increase awareness and access to those needing these resources. Overall, when utilizing direct-toconsumer marketing strategies, novel partnerships and collaborations can develop to help dramatically improve access to effective care. References Abramowitz, J. S. (2006). The psychological treatment of obsessive compulsive disorder. Canadian Journal of Psychiatry, 51(7), 407–416. American Psychiatric Association (2007). Practice guidelines for the treatment of patients with obsessive–compulsive disorder. Arlington, VA: Author. Becker, K. D., Nakamura, B. J., Young, J., & Chorpita, B. F. (2009). What better place than here? What better time than now? ABCT's burgeoning role in the dissemination
and implementation of evidence-based practices. The Behavior Therapist, 32, 89–96. Belloch, A., del Valle, G., Morillo, C., Carrio, C., & Cabedo, E. (2009). To seek advice or not to seek advice about the problem: The help-seeking dilemma for obsessive–compulsive disorder. Social Psychiatry and Psychiatric Epidemiology, 44(4), 257–264. Blanco, C., Olfson, M., Stein, D. J., Blair-Simpson, H., Gameroff, M. J., & Narrow, W. H. (2006). Treatment of obsessive-compulsive disorder by U.S. psychiatrists. Journal of Clinical Psychiatry, 67, 946–951. Eisen, J. L., Mancebo, M. A., Pinto, A., Coles, M. E., Pagano, M. E., Stout, R., & Rasumussen, S. A. (2006). Impact of obsessive-compulsive disorder on quality of life. Comprehensive Psychiatry, 47, 270–275. Goodwin, R., Koenen, K. C., Hellman, F., Guardino, M., & Stuening, E. (2002). Helpseeking and access to mental health treatment for obsessive-compulsive disorder. Acta Psychiatrica Scandinavica, 106, 143–149. Hollander, E., Stein, D. J., Kwon, J. H., Rowland, C., Wong, C. M., Broatch, J., & Himelein, C. (1997). Psychosocial function and economic costs of obsessive–compulsive disorder. CNS Spectrums, 2(10), 16–25. Kessler, R. C., Chiu, W. T., Demler, O., & Walters, E. E. (2005). Prevalence, severity, and comorbidity of twelvemonth DSMIV disorders in the National Comorbidity Survey Replication (NCSR). Archives of General Psychiatry, 62(6), 617–627. Kirsch, I. S., Jungeblut, A., Jenkins, L., & Kolstad, A. (2002). Adult literacy in America: A first look at the findings of the national adult literacy survey (3rd ed.). Washington, DC: U.S. Department of Education. Kutner, M., Greenberg, E., Jin, Y., & Paulsen, C. (2006). The health literacy of America's adults: Results from the 2003 National Assessment of Adult Literacy (NCES 2006–483). Washington, DC: U. S. Department of Education, National Center for Education Statistics. Mancebo, M. C., Greenberg, B., Grant, J. E., Pinto, A., Eisen, J. L., Dyck, I., & Rassumussen, S. A. (2008). Correlates of occupational disability in a clinical sample of obsessive– compulsive disorder. Comprehensive Psychiatry, 49, 43–50. March, J., & Benton, C. (2007). Talking Back to OCD (pp.10–11). The Guilford Press. Mayerovitch, J. I., Galbaud du Fort, G., Kakuma, R., Bland, R. C., Newman, S. C., & Pinard, G. (2003). Treatment seeking for obsessive–compulsive disorder: Role of obsessive–compulsive disorder symptoms and comorbid psychiatric diagnoses. Comprehensive Psychiatry, 44(2), 162–168. Ruscio, A. M., Stein, D. J., Chiu, W. T., & Kessler, R. C. (2010). The epidemiology of obsessive–compulsive disorder in the National Comorbidity Survey Replication. Molecular Psychiatry, 15, 53–63.
R E C E I V E D : May 3, 2010 A C C E P T E D : May 31, 2011 Available online 12 June 2011