Tuesday, May 22, 2007

Burdens and Attitudes

The May 2007 issue of the journal Pediatrics contains an article on “Psychological Functioning and Coping Among Mothers of Children with Autism.” This article resulted in some interesting discussion within CHADD’s lay and professional leadership and in a later blog I will summarize some of these discussions. The conclusion of the study was that mothers of children with autism were highly stressed and more likely to report poor or fair mental health than mothers in the general population. While this study focused on moms with children with autism, the same daily stress applies to any mother or father of children with special needs.

As the father of a 16-year-old son with AD/HD and several co-occurring disorders, dealing with disappointment and stress has been with me for 16 years. There are many moments of happiness and satisfaction but it is no bed of roses, as they say.

So along comes Dr. Joyce Brothers in an April 17 column that we just saw a little over a week ago. She calls adults with AD/HD “hypochondriacs.” Her solution to dealing with adult AD/HD: just “muddle through.” She said there is no need to seek medical advice—just muddle through life and do the best you can.

CHADD has written Dr. Brothers expressing dismay that without relying on published science she dismisses the existence of AD/HD and says that it is a mild inconvenience that one should get over. The result of her article is perpetuation of the stigma associated with AD/HD and will likely result in individuals with AD/HD and their families not seeking medical and associated professional assistance. I really wish that one could rid oneself of AD/HD and related disorders by willing it away. But the reality is that AD/HD for many people is a lifespan disorder that manifests itself in many ways.

Not only is muddling through not the correct answer, but untreated AD/HD can result in school failure, relationship problems including social isolation that my son has experienced, employment problems, and driving accidents. What kind of parents would we be if we merely told our children and family members with special needs to “get over it”? CHADD is here to respond to such misplaced attitudes, but how I wish we could spend more of our energy and resources on helping people deal with these stresses rather than the need to counter ignorance.

A sister organization initially issued a press release on Dr. Brothers. A week later CHADD wrote to Dr. Brothers. A week after CHADD wrote to Dr. Brothers, CHADD joined our sister organizations—American Academy of Child & Adolescent Psychiatry (AACAP), the American Psychiatric Association (APA), Mental Health America (MHA), and National Alliance on Mental Illness (NAMI)—in writing an open letter to Dr. Brothers. We will keep you informed about any progress or developments.

Write to Dr. Brothers via King Features, 888 Seventh Avenue, New York, NY 10019.

May we reach a time when we don’t have to deal with these public attitudes so we can increase our efforts to improve the lives of persons with AD/HD and related disorders.


Tuesday, May 15, 2007

The Evidence Base for Peer Education Relying on the "Lived Experience"

The Parent to Parent Experience
Designed to help parents of children with attention-deficit/hyperactivity disorder, CHADD’s Parent to Parent: Family Training on AD/HD enrolled its 1,000th participant this month. As of today, there are 1,167 parents participating in the program. The P2P program exemplifies one of CHADD’s core principles—peers helping peers—in this case, parents helping other parents.

A second core principle of CHADD, since our founding 20 years ago, is reliance on peer-reviewed evidence-based science. Recent published research on a sister program that P2P is based on documents the evidence.

Parent to Parent is a unique educational program for parents and individuals who are dealing with AD/HD; many participants, or their family members, have recently received a diagnosis of AD/HD and are searching for reliable, evidence-based information on the disorder. Courses are offered in 38 states and online by certified Parent to Parent teachers who have received training through CHADD.

The course, a series of two-hour classes offered during the span of seven weeks, includes a variety of topics on which parents are searching for information. The course includes an overview of AD/HD and available assessment and treatment options. Also included is information on managing the impact of AD/HD on a family, behavioral interventions that work and effective parenting strategies. School issues, such as special education and IDEA, classroom accommodations and Section 504, and how to work with school administrators are incorporated. Also discussed are issues surrounding growing older, the disorder’s impact in the teenage years and during adulthood.

P2P is an exemplary model of the role that voluntary health agencies perform in American society. Last year, the National Alliance on Mental Illness announced, after more seven years, the training of their 100,000th family in their Family-to-Family Education Program (FtF). This peer program is focused on families dealing with the recent onset of severe mental illness. Parent to Parent was the first program funded by contributions to CHADD’s President’s Council—donors who give substantial personal financial contributions to support specific CHADD educational projects that might not otherwise be possible. The P2P concept was based on NAMI’s FtF initiative and voluntarily initiated as an AD/HD program by Linda Smith of CHADD-Utah. Meanwhile, Beth Kaplanek of New York and Mary Durheim of Texas worked on similar projects. They soon collaborated and, during a period of two years, created Parent to Parent.

Linda is a former member of the CHADD national board of directors, and Beth and Mary are former CHADD national presidents. Three innovative volunteers, collaborating under the umbrella of a voluntary health organization, with financial support from other volunteers, typify the role of voluntarism in America. And these three individuals serve as a model of how to answer the question,“What’s after my national board service?”

The Evidence Base
In the winter 2007 issue of the NAMI Advocate, researchers at the University of Maryland, with financial support from the U.S. National Institute of Mental Health (NIMH), documented three research-based evaluations of the FtF program. Their findings included:

1. People completing FtF indicated less “subjective burden” after completing the program. This is a NIMH-university funded study, so the language and phrasing will be challenging. “Subjective burden” is “how much emotional stress family members rate themselves as feeling, as a result of objective stresses and other worries.”
2. People completing FtF indicated more “empowerment.” Empowerment is a term that has been used in the mental health field for the past 20 years and has been increasingly recognized by researchers and policy makers. Empowerment is one’s sense of having information, rights and skills needed to understand a given situation and to meet one’s goals within this situation. The FtF researchers asked families about their sense of empowerment in their family, in their community, and with the mental health system. People completing FtF were much more able to adapt to the situations facing them.
3. People completing FtF experienced more “proximal” positive changes (such as better family communications and less anger).
4. People completing FtF experienced more “distal” benefits (such as less stress and less conflict in the family).
5. People early in their FtF program participation felt immediately welcomed, heard that others face the same problems they do, and received valuable information from their very first meeting. These benefits led them to return to ensuing meetings. The researchers term these benefits “early sustenance.”

The Future of Parent to Parent
There are now 181 Parent to Parent teachers working with local chapters to offer the course and more than 1,045 graduates of the course. The course is also offered in Spanish across the country. In addition to information, parents and individuals learn tactics and tips for managing the disorder in their children’s and their own lives, have the opportunity to meet other people dealing with the same situations they deal with, and discuss their concerns in a supportive environment. Parents who have taken the course say they have gained a better understanding of the disorder, improved their parenting styles, and gained confidence in navigating the challenges AD/HD can present.

Over the next few years, CHADD will also be seeking independent third-party academic evaluation of the program. This is actually what is known as a “paradigm” change. Many academics and treating professionals still reject the validity of peer-provided education and support. CHADD will support NAMI and others in developing a body of evidence documenting the benefits of peer-provided education and support, using the “lived experience” as the benchmark.

To register for a course, contact Parent to Parent at CHADD; visit our website or call (301) 306-7070, extension 135.

Thursday, May 10, 2007

AD/HD Prevalence and Treatment Variance

Variance in Medication Prescribing Practices
An article on public attitudes about attention-deficit/hyperactivity disorder (AD/HD) appeared in the May 2007 issue of Psychiatric Services. The authors, McLeod and associates, compare the estimated national prevalence of AD/HD with medication use and argue that AD/HD is underdiagnosed in the United States. They also observe that critics claim the disorder is overdiagnosed because of the tremendous increase in the use of AD/HD medications over the past decade. Missing from this analysis, however, is the more significant and difficult issue of the tremendous variance in medication utilization across the nation. Where a person lives seems to be important to whether that person receives medication for the treatment of AD/HD.

There are two published national studies documenting the significant variance in medication utilization across the country. The first, the result of 14 months of work by two reporters from a major metropolitan daily newspaper, gets little attention in the published research because of the source of the data and the journalistic credentials of the researchers. On May 6, 2001, the Cleveland Plain Dealer published a major study by reporters Sabrina Easton and Elizabeth Marchak entitled, "Ritalin Prescribed Unevenly in US." This study documented the use of medication to treat AD/HD in every county in the United States, using Drug Enforcement Administration (DEA) data.

Alarmingly, the Cleveland Plain Dealer study found that in some counties in the United States the number of people being prescribed medication for AD/HD was three times the expected prevalence rate, while in other counties not a single individual was receiving medication for the disorder. There are many possible reasons for this variance. CHADD believes that a major reason for the variance is inconsistency in the use of evidence-based diagnosis and treatment guidelines as published by the American Academy of Pediatrics (AAP) and American Academy of Child and Adolescent Psychiatry (AACAP). CHADD works closely with AAP and AACAP to more effectively implement these guidelines.

The second published study of medication use is a recognized professional study published in Pediatrics in February 2003. Despite controlling for age and gender, Cox and associates conclude that variation in stimulant use among children was second only to the variation in cough/cold/allergy prescription use among children. The authors state that the reasons for regional variation in stimulant treatment are not known. They postulate that "differences in state controlled substance abuse laws, anti-Ritalin campaigns, direct-to-consumer advertising, physician practice style, the values, beliefs, and expectations of adult caregivers" are the reasons. They define "physician practice style" as either the "professional uncertainty theory" of physician uncertainty about the nature of AD/HD, and the "enthusiasm hypothesis" whereby some physicians are advocates of stimulant medication use.

Through CHADD’s advocacy with the U.S. Congress, the U.S. Centers for Disease Control and Prevention (CDC) is currently funding two community-based studies to learn more about the prevalence and treatment patterns of AD/HD. (U.S. OMB. Federal Register, April 5, 2007; 72:65, 16789-16791)

When you consider a physician or other medication prescribing professional, ask if he or she practices the American Academy of Pediatrics evidence-based guidelines. Ask if he or she practices the American Academy of Child and Adolescent Psychiatry evidence-based guidelines. Try to probe his or her philosophy and understanding about what the U.S. National Institute of Mental Health (NIMH) states is a neurobiological lifespan disorder. You need to be comfortable with the doctor’s medication training and philosophy, preferably before you go into the appointment. This is possibly a long-term partnership between you and the professional.

International Variance
While CHADD’s concern is with the variance of prescribing practice in the United States, you might be interested to know about worldwide patterns.

A March/April 2007 Health Affairs article by Sheffler and associates documents the significant variance between countries in the use of medication to treat AD/HD. These authors state their premises up front: that AD/HD is “a syndrome with strong neurobiological origins” and that the prevalence of AD/HD is similar across nations. As of 2003, 55 nations officially recognize AD/HD and officially recognize medication as one treatment for AD/HD. The United States counts for 83.1% of AD/HD medication consumption in the world. Sheffler and associates conclude that use of AD/HD medications is positively related to per capita income and to the availability of medical specialists who understand AD/HD. This is true for most health conditions.

Canada, Great Britain, and Australia show medication-use patterns similar to the United States while France, Italy, Ireland, Austria, Japan, Sweden, and Finland use less AD/HD medication than predicted by per capita income. In addition to per capita income and availability of specialists, other factors identified by the authors as influencing these patterns include advertising, the definition of AD/HD and its differing focus on severity of the disorder, public educational policies and practices, and medication spending as a portion of overall health spending. France, for example, has highly restricted and narrow criteria before medication can be prescribed, requiring that only a hospital-based neurologist, psychiatrist, or pediatric specialist in AD/HD may prescribe AD/HD medications.

I hope you find this international information helpful and educational, and not a distraction from the important issue of treatment variance within the United States. CHADD will continue to work to close the variance of treatment within the United States by working with the professional community to implement evidence-based guidelines.


Wednesday, May 2, 2007

Islands of Competence and Initial Parent Responses

Islands of Competence
Dr. Robert Brooks, an author and lecturer who frequently speaks at CHADD annual conferences, advises that we look for areas of special interest and skills in our children and that we reinforce and promote these. He calls these “islands of competence.”

My son, Andrew, has always had significant developmental delays and challenges and it has been difficult to recognize, reinforce, and promote special skills. One of his special interests and skills is an understanding of baseball and its statistics. He and I bond through our love of baseball. Another area of special skill is spelling. But in previous schools he was unable to demonstrate this skill area.

At his last year’s school, a public high school with 2,000 students, those interested in spelling joined a spelling club and competed with other school spelling clubs. Because Andrew was socially isolated at the school and the school did nothing to support and reinforce his social skills, just a few teachers and his family knew about his spelling skill and social isolation.

At his current school, a high school with 75 students with special learning styles, equally mixed between girls and boys, the school is constantly identifying skills and interests of each student and building these into fun and learning oriented activities for the entire school. Two weeks ago, as part of team competitions, the school held a spelling bee, in front of the entire student body. Andrew came in second for the Junior Varsity team. Here is a shy, quiet kid with uncertain self-confidence placing second in front of the entire school. His self-esteem was immediately enhanced. And, as a result, he has since been talking more openly with students and faculty.

It is not just the family that needs to search for these skills and interests. Social environments, such as schools, need to foster respect and esteem, using each person’s “islands of competence.”

Initial Parental Response
The May 2007 issue of Psychiatric Services, a professional journal, contains an article examining the decision process used by families when confronted with the possibility of AD/HD in their families. The four "distinct patterns" of decision are used by all families, but the researchers document that culture, race, and community influence these thought patterns.

CHADD's experience as a national resource center and a family membership organization celebrating its 20th anniversary affirms the validity of the four distinct processes. The following statements are not data driven, but are personal ideas based on six-and-a-half years of personal experience working at CHADD. The four processes, using loaded professional terminology, followed by my personal ideas, are:

1. Immediate resolution is a response frequently seen with families experiencing less severe forms of AD/HD, without co-occurring disorders, whose initial identification was made by behaviors interfering with academic performance in the school setting.
2. Pragmatic management is a response frequently seen in families with children with more severe forms of AD/HD, frequently with co-occurring disorders, and the families have come to realize that their children’s problems have been with them before entering the school setting and understand that these challenges maybe chronic and long lasting in nature.
3. Attributional ambivalence is used by those embarrassed by the possibility of AD/HD, those who do not have families and communities open to the brain-based origin of AD/HD, and/or are skeptical or afraid of medications. They are open to interventions that are not recommended by medically trained professionals.
4. CHADD, as a voluntary membership organization, has little experience with agencies of government using coerced conformance. We do hear from parents who claim that they were told by their child’s teacher to place their child on medication. Our response is that the child should receive an independent medical evaluation and that those making medical recommendations should do so within their sphere of professional competence and training. CHADD has recently published the CHADD Educator’s Manual on AD/HD: An In-depth Look From An Educational Perspective to assist teachers. We don’t hear from our members about government agencies coercing families to treat AD/HD, but some families apparently experience this.

As your family moves through life dealing with AD/HD and related disorders, please remember that you are not alone. Millions of families are facing the same challenges and emotions.