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Report of the ADD & ADHD Task Force The Attention Deficit Disorder and Attention Deficit Disorder/Hyperactivity Disorder Task Force was created by HR 83 January 11, 2005 Report of the Attention Deficit Disorder and Attention Deficit/Hyperactivity Disorder Task Force Table of Contents Members ………………………………………………………………………….. 2 Copy of House Resolution 83 …………………………………………………….. 3 Findings and Recommendations Introduction …………………………………………………………………. 6 Background …………………………………………………………………. 6 Patterns of treatment in school-aged children ………………………………. 8 Role of School Personnel …………………………………………………… 10 Recommendations ………………………………………………………….. 11 Attachments A. B. C. D. E. F. G. H. Meeting Minutes, September 30, 2004 ………………………………… Meeting Minutes, November 3, 2004 ………………………………….. Meeting Minutes, November 22, 2004 ………………………………… Attention-Deficit/Hyperactivity Disorder – Symptoms of ADHD …….. American Academy of Pediatrics’ Guidelines for diagnosis …………… American Academy of Pediatrics Guidelines for treatment ……………. Positive Behavior Support Program ……………………………………. Prescription Monitoring Program ………………………………………. 14 20 43 52 54 55 57 58 1 Members1 Dave Dryden, Co-Chair, Office of Narcotics and Dangerous Drugs Linda C. Wolfe, RN, Co-Chair, appointed by the Secretary of Department of Education Kathleen Allen, appointed by the Speaker of the House of Representatives Genevieve Tighe, appointed by CHADD W. Douglas Tynan, Ph.D., appointed by A.I. duPont Hospital and the Delaware Psychological Association Anthony Policastro, M.D., appointed by Medical Society of Delaware Andrea Rubinoff, Ph.D., appointed by the Secretary of the Division of Services for Children, Youth and Their Families Task Force Assistance: Debbie Puzzo, Task Force Administrator House Majority Caucus Legislative Hall Dover, Delaware 19901 302-744-4195 1 Representatives from specific agencies, both public and private, were mandated by HB 83. 2 SPONSOR: Rep. Smith HOUSE OF REPRESENTATIVES 142nd GENERAL ASSEMBLY HOUSE RESOLUTION NO. 83 CREATING A TASK FORCE TO STUDY THE PATTERNS OF TREATMENT OF ATTENTION DEFICIT DISORDER AND ATTENTION DEFICIT/HYPERACTIVITY DISORDER IN DELAWARE'S SCHOOL AGED CHILDREN, AND THE ROLE OF SCHOOL PERSONNEL IN THE RECOMMENDATION PROCESS FOR USE OF PSYCHOTROPIC AND SYMPATHOMIMETIC MEDICATIONS ON SCHOOL AGED CHILDREN. 1 WHEREAS, according to the Federal Drug Enforcement Agency’s 2002 report, Delaware has the 2 second highest use of prescription amphetamines and the fifth highest use of methylphenidates; and 3 WHEREAS, two of the most common types of drugs prescribed for children diagnosed with 4 Attention Deficit Disorder and Attention Deficit/Hyperactivity Disorder are amphetamines and 5 methylphenidates; and 6 WHEREAS, since 1999 the amount of amphetamines sold in Delaware has risen from 2385 grams 7 per 100 thousand to 3443 grams per 100 thousand in 2002, whereas the national average sold for this 8 drug per 100 thousand was 754 grams in 2002;and 9 WHEREAS, in 1999, the amount of methylphenidate sold in Delaware has risen from 4173 grams 10 of per 100 thousand, to 6072 grams per 100 thousand in 2002, when the national average for 11 methylphenidate sold was 4155 grams in 2002 per 100 thousand; and 12 WHEREAS, at present, eight states have passed legislation related to the effects of psychotropic 13 and sympathomimetic medications on school-aged children as well as policies relating to school 14 personnel recommending the use of these drugs; and 3 15 WHEREAS, approximately 14 states are considering legislation related to the use of psychotropic 16 and sympathomimetic medications for school-aged children, and the role of school personnel in the 17 recommendation process for pupil use of these medications; and 18 WHEREAS, given that Delaware ranks as one of the highest states for physician prescription of 19 psychotropic and sympathomimetic medications, which are largely used to medicate children diagnosed 20 with Attention Deficit Disorder and Attention Deficit/Hyperactivity Disorder, it would be beneficial to 21 investigate the use of these medications and their effects on school-aged children and the role school 22 personnel may play in the referral process. 23 NOW, THEREFORE: 24 BE IT RESOLVED by the House of Representatives of the 142nd General Assembly of the State 25 of Delaware that the Attention Deficit Disorder and Attention Deficit/Hyperactivity Disorder Task Force 26 is hereby created hereinafter referred to as the ADD & ADHD Task Force to study the patterns of 27 treatment of Attention Deficit Disorder and Attention Deficit/Hyperactivity Disorder in Delaware’s 28 school-aged children, and the role of school personnel in the recommendation process for use of 29 psychotropic and sympathomimetic medications on school-aged children. 30 31 32 33 34 35 BE IT FURTHER RESOLVED that the ADD & ADHD Task Force shall be comprised of the following: (1) The Drug Control Administrator for the Department of Health & Social Services who shall serve as Co-Chair of the Task Force; (2) The Secretary of the Department of Education who shall serve as Co-Chair of the Task Force, or her designee; 36 (3) One (1) member who shall be appointed by the Speaker of the House of Representatives; 37 (4) A Representative of Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD); 38 (5) A practicing physician with the Alfred I. duPont Hospital for Children; 4 39 (6) A representative from the Medical Society of Delaware; 40 (7) The Director of the Division of Child Mental Health or her designee; and 41 (8) A behavioral psychologist who specializes in the treatment of children. 42 43 BE IT FURTHER RESOLVED that the Majority Caucus of the House of Representatives will provide administrative support staff for the ADD & ADHD Task Force. 44 BE IT FURTHER RESOLVED that the ADD & ADHD Task Force shall organize and hold its 45 first meeting no more than ninety (90) days following the date this Resolution is passed and shall submit a 46 report to the General Assembly by January 2, 2005. 5 Findings and Recommendations Introduction The Attention Deficit Disorder and Attention Deficit/Hyperactivity Disorder Task Force (Task Force) was established in June 2004 by House Resolution 83 sponsored by State Representative Wayne Smith. This Report provides a brief overview of the findings of the Task Force and its recommendations. Background The Task Force was created to address concerns regarding national reports indicating that Delaware was high in the use of specific prescription, stimulant medication. The Federal Drug Enforcement Agency’s 2002 Report ranked Delaware with the second highest use of prescription amphetamines and the fifth highest use of methylphenidates. Both of these medications are largely used in the pharmacological treatment of Attention Deficit Disorder (ADD) and Attention Deficit/Hyperactivity Disorder (ADHD)2. The issue is timely as approximately 14 states are considering legislation related to the use of psychotropic and sympathomimetic medications for school-aged children and the role of school personnel in the recommendation process for pupil use of these medications. The Task Force was established to study the: 1) patterns of treatment of ADD and ADHD in Delaware’s school-aged children and 2) role of school personnel in the recommendation process for use of psychotropic and sympathomimetic medications on school-aged children. Task Force The Task Force required membership of representatives from the public, the Office of Narcotics and Dangerous Drugs, the Department of Education, the Division of Child Mental Health, the Medical Society of Delaware, A.I. duPont Hospital for Children, and CHADD (Children and Adults with Attention Deficit/Hyperactivity Disorder). All members were actively engaged in the process. It is noteworthy that the Task Force included recognized experts, experienced practitioners and child advocates with great knowledge about ADHD. The Task Force met three times. (Minutes are included in Attachments A, B and C.) For purposes of this report, both ADD and ADHD will be referred to as “ADHD” throughout the text unless separate diagnoses are required for clarification. 2 6 At the initial meeting, the Task Force reviewed the charge of House Resolution 83. Upon review and discussion of some of the available statistics and reports, it was determined that additional information was needed. The members decided to invite experts from the Department of Education and the medical field to address various issues. They also identified additional specific research, reports, national legislation and statistics to be reviewed by the Task Force. During its second meeting the members heard from experts regarding: 1) laws/regulations/procedures for school personnel; 2) the role of the school psychologist; 3) Positive Behavior Support (PBS); 4) diagnosis and treatment of ADHD; 5) alternative treatments; 6) insurance coverage for children in Delaware; and 7) the Prescription Drug Monitoring Program. The members were asked to submit recommendations and/or comments for discussion at the following meeting. At the third meeting, the members discussed the submitted recommendations as well as the statistics from various reports and studies. It was determined that additional information or expert testimony was unwarranted at this time. The Task Force agreed upon five recommendations, included later in this Report, which look holistically at ADHD from identification through long-term interventions and treatment. The culmination of the Task Force’s efforts has been categorized into three sections: Patterns of treatment in school-aged children, Role of School Personnel and Recommendations. Given that the underlying reason for the establishment of the Task Force appeared to be concerns over Delaware’s ranking by the Drug Enforcement Administration’s (DEA) in prescription amphetamines and methylphenidates in 2002, there was lengthy and detailed discussion in the meetings regarding these numbers. The DEA numbers, in and of themselves, provide no insight into the cause or implications of the ranking. The data is an unbiased presentation on the amount (in micrograms) of medications sold per capita for each state in the U.S. These numbers include anyone buying prescription medications from a Delaware pharmacy, which includes both children and adults. The Task Force was unable to identify any resource or data on the number of Delaware children or adults receiving these medications, the prescribed dosages, the number of Delaware healthcare providers prescribing the medications and numbers of non-Delawareans purchasing medications from Delaware pharmacies. As a result, the Task Force could not determine the cause of the ranking. None-the-less, the Task Force did feel that recommendations were warranted based upon the available expert testimony and applicable research. 7 Patterns of treatment in school-aged children3 Overview: Attention-deficit/hyperactivity disorder (ADHD) is the most common neurobehavioral disorder of childhood. ADHD is also among the most prevalent chronic health conditions affecting school-aged children and thus has an impact on education, health and mental health systems. For appropriate effective care of ADHD, it is essential to define the role of health and mental health care providers and education professionals in the initial screening, assessment and treatment. Compounding the difficulty is the fact that other conditions that are not ADHD can result in similar symptoms. Diagnostic Criteria & Prevalence: While the disorder was first identified by Dr. George Still in 1902, classification of ADHD and diagnostic criteria have shifted over the past 100 years primarily because of the multiple characteristics of ADHD. However, research on the diagnostic criteria has helped to clarify the two primary dimensions of ADHD: inattention and hyperactivity that are accepted by researchers and clinicians. The Diagnostic and Statistical Manual of the Mental Health Disorders, Fourth Edition (DSM IV), lists symptoms of both hyperactivity and inattention, of which six are needed to meet criteria for the disorder (see Attachment D). While research looking at how each factor affects other symptoms and impairment is fairly new, it is apparent that the two factors of inattention and hyperactivity result in different outcomes. Hyperactivity/impulsivity is more highly correlated with oppositional and conduct problems, but not necessarily organization and academic problems. Oppositional behavior problems are highly likely to lead to referral for services. Hyperactivity is also associated with greater rates of nonintentional injuries and peer problems due to aggression. Inattention is correlated with anxiety, depression, homework problems, friendship problems, lack of assertiveness and teacher ratings of schoolwork problems, but is not related to global assessments of functioning, aggression or conduct problems. Although the prevalence of ADHD in the United States has been estimated at about 3 to 5 percent, a wider range of prevalence has been reported across studies. When a disorder is on a continuum from a range of normal, typical behavior to one of severe impairment, accurate use of diagnostic criteria become critical so as to neither over diagnose or under diagnose. Even relatively minor changes in diagnostic criteria can result in large number of children being either excluded or included in the diagnostic categories. At a minimum the American Academy of Pediatrics (AAP) criteria should be met, including the use of detailed checklists and clear documentation of impairment across situations (including the school), a 3 The text within this section, Patterns of treatment in school-aged children, is taken from the written report (ADHD: Definition, Diagnosis and Treatment) submitted by Task Force member, W. D. Tynan, PhD. 8 detailed family history and a history and physical by the primary care provider. (Refer to Attachment E for AAP Guidelines.) Treatment: While there are many claims for effective treatment, there are relatively few scientific studies of treatment effectiveness. Testimonials about effectiveness and uncontrolled case studies do not meet the criteria of a scientific study. Treatments that have no scientific basis to date include: individual psychotherapy including play therapy; diet manipulation including the Feingold diet; EEG biofeedback; Sensory Integration Therapy; and Visual Therapy. This is not to say that these therapies are effective or ineffective, this says that there is no convincing scientific proof of effectiveness. (Refer to Attachment F for AAP Guidelines for Treatment.) Psychosocial: Only a single psychosocial intervention has been supported by research: Behavior Therapy/Management. Behavior Therapy/Management is relatively short term, has been delivered or directed by a variety therapists and showed large effects in those studies reporting degree of change. It would appear that treatment needs to be of sufficient duration both to change the child’s behavior, but more importantly to bring about meaningful and self-reinforcing change in the adults working with the child. Psychostimulants: The medications of this class have similar side effects and safety. All have been in use in the U.S. for more than thirty years. This class includes: Methylphenidate, available as Ritalin® and numerous generic brand names; Dextro-amphetamine, available as Dexedrine®, and mixed salts of dextroamphetamine and inactive levo-amphetamine, available as Adderall®. The literature of over 160 replicated randomized controlled trials demonstrates robust short-time efficacy and a good safety profile when psychostimulants are used for the symptoms of Attention Deficit/Hyperactivity Disorder (ADHD). All of these studies focused on children meeting DSM III & III R criteria for ADHD with symptoms of both hyperactivity and inattention. Combined Behavioral & Stimulant Treatment: A small number of well designed studies have demonstrated the additive effects of behavioral therapy with stimulant treatment for children with the hyperactive or combined types of ADHD. In general, these studies show that stimulant medicine helps with the core symptoms of ADHD from the DSM IV, but not with many of the co-morbid oppositional behavioral problems. Those conflicts both at home and school tend to respond to the behavioral treatments. 9 Alternative Treatments: Recent studies (Chan 2004 Boston Children’s) indicate that the majority of parents4 of children who have ADHD have sought and are using a number of alternative treatments. While these indeed are popular among parents, their efficacy is not well established at this time. These treatments utilize a number of approaches; for example: diet manipulation, nutritional supplements, herbal therapies, EEG biofeedback, various sensory stimulation/sensory integration training, and antifungal treatment. For effective treatment of ADHD, the Treatment Team needs to be inclusive. Primary care clinicians cannot work alone in the treatment of school-aged children with ADHD. Ongoing communication with parents, teachers, and other schoolbased professionals is necessary to monitor the progress and effectiveness of specific interventions. Parents are key partners in the management plan as sources of information and as the child’s primary caregiver. Role of School Personnel The role of schools is to provide educational opportunities and to facilitate learning for all children. Many medical and behavioral conditions can impact the learning process and interfere with academic success. School personnel are in a vital position to identify children who may need external evaluation and intervention in order to meet their maximum potential. Federal mandates require schools to identify children with educational needs and to find effective strategies and accommodations to support individual academic success. Each child and each situation are unique. Professional school staff recognizes behaviors, which are outside of the normal child behavior for the child’s development age, and seek to address the needs of the child. In some situations, medical referrals are indicated. In this case, the normal procedure is: 1. Staff member communicates his/her concerns to the school nurse. 2. School nurse assesses the child. 3. School nurse communicates concern with parent and recommends an evaluation by a healthcare provider. In other situations, the child may be referred for an educational evaluation for consideration of appropriate educational interventions to enhance student success. Each district has a referral process, but the usual procedure includes: 1. team observation (school psychologist, teacher, nurse, parent) 2. observation of behavior in classroom 3. medical evaluation (to rule out such conditions as hearing loss or a vision problem, which may interfere with learning) This Report uses the term “parent” to indicate the person who is responsible for the care of the child. It may be a parent, guardian or Relative Caregiver. 4 10 4. educational assessment, which requires parental permission No child can be evaluated by the school without the parents’ permission. In general the role of the school in evaluation is to: Gather information on child’s school performance and behavior Consider if behavior is linked to systemic conditions (i.e. school rules or conditions)5 Discuss concerns and observations with the parent or guardian Inform parent of evaluation procedures, distinguishing between educational evaluation and medical diagnostic determination Evaluate for suspected learning disability, if indicated In the event a child is diagnosed with ADHD, the role of the school in treatment is to: Provide accommodations, including behavior programs through 504 Plans Provide special education services, if indicated through an Individualized Education Plan (IEP) Provide feedback on treatment to parent and physician Recommendations 1. The Task Force strongly recommends that the Legislature draft legislation to establish a Prescription Monitoring Program in the State of Delaware. Rationale: Prescription Monitoring Program is a mechanism that is gaining wide-spread support across the U.S. Among other things, it would be able to provide information about the number, residence and prescriptions of children under 18, who receive stimulant medication. With that information, specific interventions could be developed if warranted. 2. The Task Force strongly recommends that the Department of Education establish guidelines and/or procedures for making a referral for a student needing for an evaluation. The referral process should mirror the referral process used for other medical conditions, such as vision and hearing. Currently, when requested, nurses may give parents information about other conditions such as diabetes and asthma. a. The school nurse should receive a written referral from the teacher or other educator; b. The school nurse should discuss with the parents (and the teacher, if indicated) the reasons for the referral; 5 It is the goal of the Department of Education to implement Positive Behavior Support Programs (PBS) in all the schools. To date, fifty-two schools have received training. PBS looks at school-wide strategies to create a school environment that is conducive to learning. (Refer to Attachment G for more information on PBS.) 11 c. This referral form should be standardized across schools systems throughout the state. d. A copy of the completed form and any subsequent information from the parent or healthcare provider should be maintained in the student’s health record; and e. If requested (or indicated after diagnosis), the school nurse should provide parents or teachers with information about ADHD from a reliable source (such as the National Resource Center on ADHD at www.help4adhd.org) and/or be directed to the local chapter of CHADD or the CHADD website (www.chadd.org). Rationale: Teachers and other school personnel can provide valuable information, regarding “observable behaviors” in the school setting that may require medical or behavioral intervention. 3. The Task Force urges the Insurance Commissioner determine means to provide coverage for full evaluations including psychological and other testing. Rationale: According to the American Academy of Pediatrics, “Attentiondeficit/hyperactivity disorder (ADHD) is the most common neurobehavioral disorder of childhood. ADHD is also among the most prevalent chronic health conditions affecting children and adolescents. Children with ADHD may experience significant functional problems, such as school difficulties, academic underachievement, troublesome interpersonal relationships with family members and peers, and low self-esteem. These children also have elevated rates of co-morbid anxiety, affective disorders, conduct problems and learning disabilities than typically developing children. Both core symptoms of ADHD and co-morbid disorders need to be assessed through full psychological evaluations. Pediatricians and other primary care clinicians are frequently asked by parents to evaluate a child for ADHD, and they typically do not have the time to evaluate both the ADHD and possible related disorders. Early recognition, accurate assessment, and management of this condition can redirect the educational and psychosocial development of most children with ADHD." 4. The Task Force urges schools and providers to work collaboratively to address any communication barriers. Rationale: School personnel are in unique and important positions to provide feedback about children’s behavior. Observation is important to both the diagnosis and ongoing treatment of the child with ADHD. Healthcare providers and schools should work collaboratively when appropriate and in the best interest of the treatment of a child. Communication should not be compromised, nor should the integrity of 12 patient/student confidentiality, because of HIPAA and FERPA requirements. 5. The Task Force encourages the Department of Education to continue with its goal to educate all school personnel in the areas of Positive Behavior Support (PBS). Although PBS is not specific to children with ADHD, it can influence creating a school environment that will facilitate better learning in children with ADHD. (See Attachment G for more information on PBS.) This education should include a training on ADHD and related behaviors. Rationale: Positive Behavior Support is a critically important program that addresses many of the support systems and interventions that help alleviate some of the problems of children diagnosed with ADHD, regardless of their choice of treatment. Good behavioral strategies are a viable treatment that can be done at school regardless of diagnosis and other treatments. 13 Attachment A: ADD/ADHD Task Force Meeting Thursday, September 30, 2004 Minutes Members Present: Dave Dryden, Co-Chair, Office of Narcotics and Dangerous Drugs Linda Wolfe, Co-Chair, appointed by the Secretary of Department of Education Kathleen Allen, appointed by the Speaker of the House of Representatives Genevieve Tighe, appointed by CHADD Andrea Rubinoff, appointed by the Secretary of DSCYF W. Douglas Tynan, appointed by A.I. duPont Hospital and the Delaware Psychological Association Debbie Puzzo, Task Force Administrator for the House Majority Caucus Member(s) Absent: Anthony Policastro, M.D., appointed by Medical Society of Delaware Attendees: Susan Keene Haberstroh, Executive Assistant to Secretary Woodruff, DOE Co-Chair Dave Dryden called the meeting to order at 1:10 pm. He thanked everyone for agreeing to serve on the Task Force. Dave stated that this Task Force was created by House Resolution 83 sponsored by Representative Wayne Smith. The purpose of the Task Force, as stated in the Resolution, is “to study the patterns of treatment of Attention Deficit Disorder and Attention Deficit/Hyperactivity Disorder in Delaware’s school-aged children, and the role of school personnel in the recommendation process for use of psychotropic and sympathomimetic medications on school-aged children. Introductions were made.” Co-Chair Linda Wolfe also welcomed the members and thanked them for serving. She stated that the members should have received various pieces of information via the mail. Linda stated that the report is due in January. She began with an opportunity for members to comment on the documents they received. Then discussion moved to general topics relative to general information, concerns and questions relative to the purpose of the Task Force. She asked the members whether the group needed to review additional information (i.e. documents or expert presentations) for the next meeting. Linda referenced the NCSL article, Psychotropic Medication at Schools. Dr. Tynan stated that the listed legislation, in general, has at its core either investigation into the use of psychotropic medication only, or some prohibitions or restrictions on what school personnel can do to talk to parents about medication. Dr. Tynan was struck by the fact that none of the legislation was pro active or designed to help children. For example, none of these bills mandate that schools should do some type of evaluation of a child, and that services should be offered, knowing that the two treatments, stimulant meds and behavioral therapies, work well for ADHD/ADD. The listed bills are worded in a negative way and he does not believe this is the direction that the task force should take. He does not see how any of these laws can help children. They might reduce the number of kids that get medicated but it is not clear that that necessarily helps children. 14 Linda referenced the piece of literature, Psychotropic Drugs and Children, The Center for Health & Health Care in Schools. Dr. Tynan stated that it is general information and demonstrates what we already know - rates of all medications are going up rather dramatically. He believes that the rate for antidepressants is going to drop precipitously given the recent FDA restrictions. If we want to look at treatment identification and treatment of ADHD he doesn’t think we want to be restricted to looking at medication. Reference to the piece of literature, Drug Distribution, from the DEA. This piece is two years old, but it is the most recent information available. Another report will not come out for another 2 years. Dave stated that the info shows that Delaware is a high prescriber of D-amphetamine medication and also methylphenidate medication. This is about the same place we were back in 1999. This information is the basis of what concerned Rep. Smith. Genevieve asked whether it would be possible to get data showing what percentage of these prescriptions are given to people over 18? Dave stated that he is not sure that the DEA even has that info. Another piece that would be helpful would be to find the percentage of Delawareans that have a prescription health plan. Many of the parents she speaks with that don’t have a prescription plan, medication is a problem financially. Kathy stated that Delaware is also the highest for DL-amphetamines. She provided this info. Dr. Tynan stated that an adult might be taking a dosage that is 3-4 times what a child would be taking. 100 adults can look like 400 kids if we are just looking at total prescriptions. Dr. Tynan also stated that the missing info is how many children are being prescribed. Dave said he does not think that info is available. Dave stated that if Delaware had a prescription monitoring program that info would be able to be tracked. Many states do have this program. Pharmacies send info to one central computer bank. The DEA is providing funding for this program for the initial 2 years. This Task Force might want to recommend that Delaware establish a prescription monitoring program. Dr. Tynan referenced Daniel J. Safer, MD (Johns Hopkins) and some of the findings of a 1997 Maryland Task Force created to “study the uses of methylphenidate and other drugs on school children.” Info gathered information from every school nurse from every public school in the state of Maryland. Dr. Safer also found enormous county/city differences. 3.5% of the school age children were medicated statewide. This number tells us nothing about how they were diagnosed or whether they are being medicated appropriately. Andrea Rubinoff stated that at Child Mental Health, more people are being diagnosed as bipolar. Often cases that come to her as bi-polar often look like ADHD. She is more concerned about the medication being given out to people diagnosed as bi-polar. Dr. Tynan stated that in the last 5 years, the Academy of Pediatrics and the American Academy of Family Physicians have published guidelines in their journals about how to diagnose ADHD. It has moved from a mental health specialty to something that sits in primary care. The Academy of Pediatrics has issued very clear guidelines for diagnosing, so many more pediatricians and family practitioners are more comfortable prescribing if they feel they have the history, have the appropriate checklist and some evidence of parents and documentation from school. It is not clear whether everyone follows those guidelines. Diagnosis is much more widespread. People do not necessarily go to an ADHD clinic and have a full psycho/educational evaluation and workup. 15 Kathy Allen stated that her concern stems from what she went through with her own child two years ago. She was approached by the teacher after 7 days in school. It was very rapid. She went to her pediatrician. After a lot of comments from the teacher, Kathy took her child to A.I. duPont for an evaluation. The child was not diagnosed with ADHD. At this time, Kathy started looking into the controversy and she became aware that Delaware has very high levels of medication as opposed to other states. She shared her concerns with Rep. Wayne Smith. Dr. Tynan stated that the bottom line diagnostic guidelines set by the Academy of Pediatric include (for simple ADHD, not for complex cases): A complete history and physical Send documents to the school ask for a narrative from the teacher Checklist of history from the parent Documentations of problems before age 7 Documentation of “the 18 behaviors” occurring in 2 settings, usually home and school Evidence of impairment in 2 settings Clinical judgment on whether or not there is an impairment. Blood tests and brain scans are not used as diagnostic tools. Kathy asked how many children diagnosed with ADHD have gone through a rigorous evaluation. Dr. Tynan replied that there are probably fewer than 15-20%. Dr. Tynan believes that one problem is - What does the teacher do first? “Johnny won’t sit still, he is out of his seat, and not learning well.” Is there something we can do in Delaware so children aren’t automatically referred to medication. Can we come up with something constructive to give school personnel, some tools or some strategies to use that will help kids? Genevieve suggested finding a way to encourage parents to have an evaluation/testing done and give them resources. Genevieve suggested that this Task Force recommend that school personnel should make suggestions/comments (regarding behavior/evaluation etc.) to the parent in writing. She also suggested that teachers be given a flow chart as to how to proceed if they believe a child has a problem (depression, anxiety, ADD, etc.) Dr. Tynan stated that unfortunately, there is no one on the Task Force from the schools, such as a school counselor, psychologist, teacher or someone to talk about what the process is in the schools. Linda stated that that she is the designated representative, but she would like to invite the person from DOE, that is involved with special education, come and explain the process, the regulations, and the law to the Task Force. Dr. Tynan stated that he would like to see the teachers better trained in Positive Behavior Support. Linda stated that the department is providing this training. School personnel and parents need to be aware that other conditions mimic ADHD. Linda stated that for a teacher to say that a child has ADHD is inappropriate. What can we do that is in the best interest of the child? What is appropriate for a teacher to do when he/she sees a problem? Linda stated that the school psychologist cannot diagnose or prescribe. The teacher would not be able to write in the student’s file that the child has ADHD or hand out medicine without a 16 physician’s diagnosis and prescription. Linda is unaware of any schools that diagnose this – she will pose this question. The school psychologist does testing and can make a recommendation. Task Force members reported that Brandywine used to gather information from parents and teachers and pass on the doctor, however they are no longer doing this since Jan. 1, 2004. Dr. Tynan stated that the core problem is that ADHD crosses the mental health and education domains. There is friction between the professional domains and the funding sources. Kathy stated that she believes insurance coverage is an issue. Linda stated that Dr. Policastro also raised that issue in his emails. He was concerned the many insurance companies are not providing coverage for the full evaluations and comprehensive tests. Dr. Tynan stated that Blue Cross of Delaware is the only company covering it. Medicaid is not covering anymore. Linda stated that we will have someone address this issue. Insurance companies in general will cover treatment, both behavioral and pharmacological, and for mental health providers, a diagnostic interview. A number of companies will cover some hours of testing if you can give them justifications as to why you are testing. Some companies are more liberal than others. There is a variation within the Mid-Atlantic region. A full intelligence test, with academic functioning and other functioning tests, takes about 4-6 hours of billable time at an estimated $200 per hour. The rate at the hospital is $250 per hour. Medicaid was covering these test, however, they are no longer covered. Linda asked if it was possible to draw the conclusion “that it is likely that Delaware has a high rate of prescriptions because the whole battery of testing hasn’t been done to identify something else and prescribing meds is an “easy” diagnosis? Dr. Tynan stated that that theory would fit a North Carolina study however he does not believe that is the case in Delaware, since mental health services are more available here than in other areas. Andrea stated that in her conversations with Dr. Richard Margolis, a consulting psychiatrist with Child Mental Health, and he stated that it is agreed upon in the professional circle that ADHD is actually under diagnosed – not over diagnosed. The fact that many people go directly to the medication scares people away from getting the diagnosis. Dr. Tynan stated that you can do other things and that there are problems with the medication. Longitudinal studies show that over 3-4 years most parents drop the meds. If they haven’t done other things – you have a relapse. Dr. Tynan asks parents to think carefully about medication – the role, the need and the long term effects. There are a number of side effects – not just physiological but cultural and other. If someone wants to join the army and they are 16 and diagnosed with ADHD and take medication, they can’t join. More adults are also being diagnosed. Since it is a clinical decision, and the symptoms are on a continuum like weight or blood pressure would be, certain individuals can be maintained. Other people the symptoms are so severe that they do need medication to help them. It is not a categorical illness. Linda brought up the issue that school nurses, nationally are seeing a trend toward higher doses of and longer acting medications. Linda noted that with the new medications, they do not need to be distributed at school. As many parents feel that there is a stigma attached to the diagnosis, they don’t tell the school the child 17 was diagnosed. The school therefore cannot provide any support for the student. Linda asked if there is any way to tease out whether there is a trend for higher doses of medications being given in Delaware? Andrea stated that she is finding that there is a big discrepancy. Some psychiatrists are under medicating the kids and the kids are continuing to have problems and then on the other hand, some kids are getting 5 or 6 psychotropic medications. She has never seen this before she came to Delaware. She would love to have a task force look at this issue (kids getting 5 or 6 psychotropic medications and is amazed at the amount of different medications children are getting). Dave did not believe this data would be available without a prescription monitoring program. The next meeting will be fact finding and hearing from experts. The following meeting will include a discussion about what we are going to do with this information, are there any holes, and whether we are at a point to make recommendations regarding the treatment and the role of school personnel. Kathy and Dr. Tynan passed out information. Kathy: 1) LeFever – Studies done in Virginia 2) Rowland – Study done in Johnston, North Carolina 3) Angold – Study done in Great Smokey Mountains 4) Cox – Study showing geographic variation in use of stimulants 5) Snider – Wisconsin study showing teachers had limited knowledge about ADHD and the use of stimulants 6) Sax – Study showing teaches were most likely to be first o suggest the diagnosis of ADHD 7) Congressional Testimony 8) American Academy of Pediatrics Guidelines for ADHD diagnosis 9) ARCOS (DEA) record of drug distribution per 100,000 K population for DLamphetamine, Damphetamine and methylphenidate Dr. Tynan: 1) Stimulant Treatment in Maryland Public School, Daniel J. Safer, MD ACTION ITEMS Requested information: 1. Percentage of people over 18 who are prescribed the medications listed in the DEA literature – Dave (DEA phone # in Philadelphia 215-597-9540) 2. Percentage or number of Delawareans that have a prescription plan – Debbie 3. Related info about children - Delaware numbers – Debbie/Dave 4. Status of HR 1170 – from Congressman Castle’s office - Debbie Speakers/Issues for upcoming meeting: 1. Insurance coverage in Delaware 2. Positive Behavior Support programs in the schools 3. Someone involved in special education at DOE, to explain the process, role of the team members, the regulations, and the law. 4. Dr. Tynan – overview of diagnosis & treatment (meds, behavior therapy & family therapy) 5. Info about children - # of children with prescription plans - Debbie # of children receiving Delaware numbers 6. Prescription monitoring programs in other states - Dave SUGGESTED RECOMMENDATIONS (to be considered at a later date) 18 1. 2. This Task Force might want to recommend that Delaware establishes a prescription monitoring program. This Task Force may recommend that school personnel should make suggestions/comments (regarding behavior/evaluation etc.) to the parent in writing. NEXT MEETING Wednesday, Nov. 3, 2004 1:00 – 3:00, House Hearing Room, 2nd Floor Legislative Hall, Dover The meeting was adjourned at 2:35 pm Respectfully Submitted by: Debbie Puzzo/October 18, 2004 19 Attachment B: ADD/ADHD Task Force Meeting Wednesday, Nov. 3, 2004 Minutes Members Present: Dave Dryden, Co-Chair, Office of Narcotics and Dangerous Drugs Linda Wolfe, Co-Chair, appointed by the Secretary of Department of Education Kathleen Allen, appointed by the Speaker of the House of Representatives Genevieve Tighe, appointed by CHADD Andrea Rubinoff, appointed by the Secretary of DSCYF W. Douglas Tynan, appointed by A.I. duPont Hospital and the Delaware Psychological Association Anthony Policastro, M.D., appointed by Medical Society of Delaware Debbie Puzzo, Task Force Administrator for the House Majority Caucus Attendees: Susan Keene Haberstroh, Executive Assistant to Secretary Woodruff, DOE Lori Duerr, DOE Dennis Rozumalski, DOE Michael Morton, Controller General’s Office Martha Toomey, DOE Martha Brooks, DOE Co-chair Dave Dryden called the meeting to order at 1:05 pm. He thanked everyone for attending the meeting. Co-chair Linda Wolfe stated that it was agreed at the previous meeting to have experts address questions generated by the Task Force. The following is a summary of those presentations and information elicited through discussion and questions between the Task Force and the experts. Positive Behavior Support (PBS) Initiative - Department of Education – Lori Duerr and Dennis Rozumalski, “PBS is a broad range of systematic and individualized strategies for achieving important social and learning results while preventing problem behavior” (Center on Positive Behavioral Interventions and Support, 2001). PBS is a collaborative project with the Delaware Department of Education, the University of Delaware Center for Disabilities Studies, and Delaware's Public Schools. It is in its 6th year in Delaware. Fifty two schools are currently involved in the program. (25 new schools were added this year). These schools include public, charter and alternative schools. When PBS strategies are implemented school-wide, students benefit by having an environment that is conducive to learning. All individuals (students, staff, teachers, parents) learn more about their own behavior, learn to work together, and support each other as a community of learners. The following are some key elements that characterize PBS schools in Delaware. They: Embrace both “systems” and “individualized” perspectives in adopting a broad range of evidenced-based strategies, programs, and supports. Establish a positive and safe school climate that promotes academic, social and emotional development. Place great emphasis on the importance of preventing behavior problems. They are proactive and positive rather than reactive and punitive. 20 Recognize that ALL students can benefit from proactive positive behavioral supports. Adopt a team process for planning, development, implementation, and evaluation. Implement, with demonstrated fidelity, a variety of positive techniques, strategies, programs, and supports at three levels of prevention and intervention: universal (for all students), secondary (target “at-risk” students), and tertiary (targeting students with serious and/or chronic behavior problems). Develop individualized behavioral support plans, linked to functional behavioral assessments, when supporting a student with challenging problem behavior. Recognize that many students with serious and chronic behaviors require coordinated and integrated “wrap around” services. A discussion and step by step analysis of a sample student’s behavior was provided to illustrate successful PBS intervention. The Task Force asked the experts specific questions regarding PBS support plan. If a child has an IEP, the support plan is incorporated into the IEP. The development of a support plans takes many meetings between a school wide team that includes a representative from each grade level, the nurse, parents and the counselor. Sometimes students participate in the meetings. A support plan can be created for regardless of whether a student receives services. The PBS process is school wide for all students. It addresses the school system and delivery of education in a comprehensive manner that yields changes that impact individual students. Definition, Diagnosis and Treatment of ADD/ADHD - Dr. Tynan (A complete copy of Dr. Tynan’s comments can be found at the end of this document.) The terminology of and reference to ADHD has changed over the years. The National Institutes of Health Consensus Conference November 1998 found that there is validity in the diagnosis of ADHD as a disorder with broadly accepted symptoms and behavioral characteristics that define the disorder. There are two factors that should be considered with ADHD – inattention and hyperactivity/impulsiveness. There can be a combination of both factors. Each factor has list of nine symptoms. For a diagnosis the individual needs to have 6 of the nine symptoms listed in each category and onset before age seven, behaviors that occur in two settings, and significant social, academic or occupational impairment. Guidelines for standards of care for assessment & treatment were outlined by the American Academy Child & Adolescent Psychiatry (October 1997); American Medical Association Council Report (April 1998; and the American Academy of Pediatrics (May 2000). According to the American Academy of Pediatrics, psychological testing is not required to make a diagnosis. ADD/ADHD can be co-morbid with other disorders, for example a learning disability. Treatment of ADD/ADHD - Dr. Tynan Treatments with documented effectiveness: Behavior modification Stimulant medicine Role of Primary Care Gather information from home and school Use AAP guidelines for evaluation Discuss treatment options with parents 21 Treat / refer as needed. Role of the School in Evaluation Gather information on child’s school performance and behavior Discuss with parent Inform parent of evaluation procedures, distinguishing between educational evaluation and medical diagnostic determination Evaluate for suspected learning disability - most health insurance will not cover this Role of the School in Treatment Provide accommodations, including behavior programs Under Section 504, items such as preferential seating, use of classroom behavior programs. Provide special education services if problem is severe Provide feedback on treatment to parent and physician Role of Mental Health Providers Provide parenting skills therapy Provide individual therapy and support as needed Dave asked whether there are any effects of long term stimulant use and are there any adverse affects to the heart. Dr. Policastro stated that there is no evidence of any long term affects on the heart. Usage may affect height, weight, growth and appetite. In 1975 Congress passed legislation recognizing learning disorders and ADHD. The diagnosis of ADHD has been used regularly since the late 1960’s. Alternative Treatments – Dr. Tynan Treatments that have no scientific basis to date include: Individual psychotherapy including play therapy. Diet manipulation including the Feingold diet EEG biofeedback Sensory Integration Therapy Visual Therapy. Task Force members noted (and the doctors confirmed) that other alternative treatments such as brushing, spectrogram, massage have not been scientifically confirmed as effective. Dave reported to the group that Dr. Alton Williams had requested to come before the Task Force group to make a presentation regarding a vision therapy program he founded. The members of the Task Force stated that they did not feel that a presentation was necessary as it is not directly related to the charge. The doctors on the Task Force agreed that they would be willing to review any documented research submitted by Dr. Williams, however, that review would be done outside this Task Force. A letter will be sent to Dr. Williams relaying the above information. Laws/Regulations/Procedures for school personnel – Martha Toomey, Martha Brooks, DOE A copy of the Regulations was distributed. New Regulations will be presented to the State Board in November. They will redefine and separate disabilities and clarify some procedures. For a child to be identified as ADHD impaired, there must be a doctor’s diagnosis. Federal statute requires schools to identify children with educational needs. The specific process for identification and referral is determined by state regulations and district policies. The issue 22 may not be whether it is the role of the school or not but rather how the process/referral is handled by the teacher/school. No child can be evaluated by the school without the parents’ consent. No special services can be made available to a child without the parents’ consent. The following describes what happens when a parent or teacher recommends that a child be evaluated. Prior to making a referral for evaluation steps are taken to make sure that the child’s problem is not a failure of instruction The formal evaluation process includes: - parental permission - team evaluation (school psychologist, teacher, nurse, parent) - observation of behavior in classroom - education assessment - medical information (to rule out such conditions as hearing loss, vision problem, etc.) Dr. Policastro stated that he works with two districts and each district handles the evaluation process differently. This was confirmed by Martha Toomey. Martha Brooks stated that every district has instructional support team guidelines and a process for evaluation. Martha Toomey will make copies of random district instructional support team guidelines for the Task Force to review at the next meeting. Martha Brooks stated that there a broad range of testing. A.I. duPont offers very comprehensive testing. The checklist from the school must be given to the doctor by the parent. Schools cannot contact the doctor directly. Kathy expressed her concerns regarding studies done in North Carolina and Virginia regarding the number of children receiving medication and the possible implications for Delaware. She stated that the reason that this Task Force is meeting is “because Delaware’s numbers are so high” and she brought this to the Representative Smith’s attention. The Task Force discussed “Johnny can’t sit still in the classroom” and evaluation guidelines for both schools and physicians. Kathy suggested that doctors are over diagnosing ADHD/ADD. She also believes that perhaps this diagnosis is a cultural phenomenon. Martha Brooks referred to the “designer disability phenomenon”. In the 1960’s schools saw increasing numbers of children with learning disabilities; currently there are increased number of children with asperger’s syndrome. The question for the Task Force continues to be if ADHD is over-diagnosed or if doctors are overdosing. Kathy stated that there is no way this group can determine whether doctors are overdosing or not. She asked whether there is something we need to do with these high numbers to address children at risk? Dr. Policastro referred to a survey he remembered being done a few years ago by school nurses. The Task Force would like to see the survey. Kathy stated that she believes that medication is the first treatment people turn to and that is why we are here. Kathy suggested that even if there is a misdiagnosis, everyone would benefit from 23 the effects of the medication. Dr. Policastro stated that although every child would improve on the medication, in a child with ADHD/ADD there would be a marked difference. Dr. Tynan stated that he believes that teachers play an important role in the diagnosis. The best thing teachers can do is gather information for the doctors about the child’s behavior and learning in the school setting. Role of the school psychologist – Martha Toomey, Martha Brooks, DOE The school psychologist is involved in all areas of working with children with ADHD. The school psychologist is not a medical doctor and CANNOT prescribe medication or diagnose. The psychologist’s role is identification and assessment. Debbie Puzzo excused herself as a staff person for the Task Force and spoke as a member of the public. She stated that as a parent of a child with ADD she would have welcomed a suggestion by a teacher when her child was in 2nd, 3rd, 4th or even 5th grade that perhaps her child had ADD. She asked this Task Force not to focus on medication as being a bad thing. “Do not tie the teachers’ hands so they cannot make that referral.” Kathy stated that parents may be being pressured into placing their child on medication. Linda stated that she is not convinced that Delaware’s high numbers are because schools are pressuring parents. She wondered what percentage of adults are using medication, what the dosage levels are, etc.. She stated that based upon all the information we have to date she is not convinced that the schools are over referring and thus causing Delaware numbers to appear so high. She suggested that perhaps Delaware’s numbers are higher than other states because Delaware does a better job of reporting. Dr. Rubinoff suggested that the public needs to be good consumers. Parents need to be educated about ADHD. CHADD has a big role in the teacher/parent relationship. HR 1170 - Overview of findings; status in Washington – Debbie Puzzo No response from Congressman Castle’s office. Insurance coverage for children in Delaware - Dr. Policastro While not confined to the State of Delaware, there is a problem with Managed Care Organizations reimbursement for ADHD evaluations. Their tendency is to expect to pay for a 15 minute evaluation for this diagnosis. The result is a situation where the physician must decide with inadequate data whether to give the patient a trial of stimulant medication or not. This creates a leaning toward a trial of medication. “When I was a general pediatrician, AI DuPont used to get reimbursed about 25% of billed charges for my services in this area. Now that I am a Board Certified Developmental and Behavioral Pediatrician, the reimbursement has risen to 47% of charges" Debbie distributed information from the Delaware Health Care Commission and KIDS COUNT 2004 regarding the number of children without insurance. From the Delaware Health Care Commission (10/27-04): 9.6% of persons aged 0-4 are uninsured and 8% of persons aged 5-17 are uninsured. 24 The report also states that an estimated 17,897 persons aged 18 and under are uninsured, but of that, only 2499 are officially classified as being under the poverty line and over 51% are above 2 times the poverty line. This suggests that Medicaid and CHIP enrollments are having their desired effect. This does not get at issues of those who have private coverage, but may not have a prescription plan, or a comprehensive one. We have struggled with the "under-insured" for several years, but measuring it is tough, and arriving at a common definition of exactly what under-insured means From KIDS COUNT 2004 – Annie E. Casey Foundation: State National Children without health insurance (2001) 8% 12% Prescription Drug Monitoring Program - Dave Dryden Prescription Monitoring Programs (PMPs) provide a highly efficient means of collecting the prescribing and dispensing information that has been routinely collected as part of investigations into prescription drug diversion. Currently 22 states have PMPs and these states have found that PMPs are an effective tool for enforcement, education and prevention that does not interfere with legitimate prescribing and dispensing of pharmaceuticals. The Federal DEA has funding available for the first 2 years of a program. The funding is approximately $300,000. Delaware/national numbers (Number of children taking medication/children’s dosages) – Dave Dryden This information is not available. Although pharmacies can be requested to voluntarily provide this information it would be a labor intensive undertaking and the information collected would not necessarily be complete. Minutes from the September 30, 2004 meeting were approved and accepted. ACTION ITEMS Requested information: 4. Copy of survey from school nurses – Dr. Policastro, Martha Brooks 5. Status of HR 1170 – from Congressman Castle’s office – Debbie 6. Copies of random district instructional support team guidelines – Martha Toomey 7. Task Force members were asked to jot down any remaining questions for the experts 8. Task Force members were asked to compile a list of possible recommendations. Issues for upcoming meeting: 1. The Role of School Personnel SUGGESTED RECOMMENDATIONS (to be considered at a later date) 3. This Task Force might want to recommend that Delaware establishes a prescription monitoring program. 4. This Task Force may recommend that school personnel should make suggestions/comments (regarding behavior/evaluation etc.) to the parent in writing. 5. The public need to be educated about ADD/ADHD so they can become good consumers. NEXT MEETING 25 Monday, November 22, 2004 2:00 – 4:00, House Hearing Room, 2nd Floor Legislative Hall, Dover The meeting was adjourned at 4:00 pm Respectfully Submitted by: Debbie Puzzo November 17, 2004 26 ADHD: Definition, Diagnosis and Treatment W. D. Tynan, Ph.D. Attention-deficit/hyperactivity disorder (ADHD) is the most common neurobehavioral disorder of childhood. ADHD is also among the most prevalent chronic health conditions affecting school-aged children and thus has an impact on education, health and mental health systems. For appropriate effective care of ADHD, it is essential do define the role of health and mental health care providers and educational professionals in the initial screening, assessment and treatment. Compounding the difficulty is the fact that other conditions that are not ADHD can result in similar symptoms. The core symptoms of ADHD include inattention, hyperactivity, and impulsivity that exist without any apparent external causes. But these same behaviors may also be symptoms of learning difficulties, affective disorders or environmental conditions. Children diagnosed with ADHD experience an inability to sit still and pay attention in class and the negative consequences of such behavior. They experience peer rejection and engage in a broad array of disruptive behaviors. Their academic and social difficulties have far-reaching and longterm consequences. These children have higher injury rates. As they grow older, children with untreated ADHD in combination with conduct disorders experience drug abuse, antisocial behavior, and injuries of all sorts. For many individuals, the impact of ADHD continues into adulthood. Families who have children with ADHD, as with other behavioral disorders and chronic diseases, experience increased levels of parental frustration, marital discord, and divorce. In addition, the direct costs of medical and mental health care for children and youth with ADHD are substantial. These costs represent a serious burden for many families because they frequently are not covered by health insurance. Children with ADHD also can increase costs for schools. In the larger world, these individuals consume a disproportionate share of resources and attention from the health care system, criminal justice system, schools, and other social service agencies. Methodological problems preclude precise estimates of the cost of ADHD to society. However, these costs are large. For example, additional national public school expenditures on behalf of students with ADHD may have exceeded $3 billion in 1995. Moreover, ADHD, often in conjunction with coexisting conduct disorders, contributes to societal problems such as violent crime and teenage pregnancy. If a mental disorder is defined as a disorder that causes in major life activities, then ADHD qualifies because of its disruption in school, family and other social relationships. Diagnostic Criteria & Prevalence Clinicians who diagnose this disorder have been criticized for merely taking a percentage of the normal population who have the most evidence of inattention and high levels of activity and labeling them as having a disease. In fact, it is unclear whether the signs of ADHD represent a discreet categorical disorder in the population, or one end of a continuum of characteristics. Most of the data at this time point to ADHD symptoms as being on the end of a continuum and not a discrete categorical entity. This is not unique to ADHD as other medical diagnoses, such as essential hypertension are continuous in the general population, yet the utility of diagnosis and treatment have been proven. Nevertheless, related problems of diagnosis include differentiating this entity from other behavioral problems and determining the appropriate boundary between the normal population and those with ADHD. ADHD, in the majority of cases, does not present as an isolated disorder, and comorbidities (coexisting conditions) complicates research studies, which may account for some of the inconsistencies in research findings. 27 While the disorder was first identified by Dr. George Still in 1902, classification of ADHD and diagnostic criteria have shifted over the past 100 years primarily because of the multiple characteristics of ADHD. In particular there have been significant changes in diagnostic criteria in the past 25 years, and the currently terminology is certainly cause for confusion. . However, research on the diagnostic criteria have helped to clarify the two primary dimensions of ADHD: inattention and hyperactivity, that are accepted by researchers and clinicians.. The Diagnostic and Statistical Manual of the American Psychiatric Association - Second Edition (DSM II) published in 1968 and emphasized a disorder of hyperactivity. By 1980, the DSM III swung in the direction of emphasizing attention problems, and acknowledged hyperactivity and yielded essentially two diagnostic categories, and discussed three dimensions including impulsivity, hyperactivity and inattention, and resulting diagnoses of Attention Deficit Disorder with or without hyperactivity. In 1987, the two factors were combined in the DSM III-R into a single list of 14 symptoms of both hyperactivity and inattention, of which eight were needed to meet criteria for the disorder (ADDH). However, there were concerns that this single factor model did not classify those children who had significant attention and focus problems and genuine impairment if they did not have signs of hyperactivity and also would not include children who simply had hyperactivity without signs of inattention. In the field trials to develop criteria for DSM IV, a number of researchers looked at a broad array of symptoms in large numbers of referred patients and did both exploratory factor analysis, to determine if certain symptoms reliably co-occurred, and confirmatory factor analyses to see if these factors held up in prospective evaluations of patients. These studies consistently indicate that the distinction between the two dimensions of inattention and hyperactivity / impulsivity provides a better explanation of the covariation of symptoms than either the three factor DSM III or the single dimension of the DSM III R. When these extensive studies are considered they provide substantial support for the internal validity of the two factors, even though the two factors are correlated and do co-occur quite frequently in individuals. While research looking at how each factor affects other symptoms and impairment is fairly new, it is apparent that the two factors of inattention and hyperactivity result in different outcomes. Hyperactivity / impulsivity is more highly correlated with oppositional and conduct problems, but not necessarily organization and academic problems. Oppositional behavior problems are highly likely to lead to referral for services. Hyperactivity is also associated with greater rates of non-intentional injuries and peer problems due to aggression. Hyperactivity problems do result in global ratings of impairment and are detected by broad global checklists (e.g. Achenbach CBCL) Inattention is correlated with anxiety, depression, homework problems, friendship problems, lack of assertiveness and teacher ratings of schoolwork problems, but is not related to global assessments of functioning, aggression or conduct problems. Thus broad global checklists (e.g. Achenbach CBCL) do not detect inattention problems even when they are significant. (Lahey et al. 2002). Developmentally, over time and growth into adolescence, there is a decline in hyperactivity and impulsivity, but the development course of attention problems is not clear. Although the prevalence of ADHD in the United States has been estimated at about 3 to 5 percent, a wider range of prevalence has been reported across studies. A recent Commonwealth Fund nationally representative survey found an overall rate of 3% in six year old children with 5% of boys and 2% of girls identified as having been formally diagnosed and treated for ADHD: 28 The reported rate in some other countries is much lower, in others much higher. Recorded prevalence rates for ADHD vary substantially, partly because of changing diagnostic criteria over time,10–13 and partly because of variations in different settings and the frequent use of referred samples, rather than population samples to estimate rates. Studies using ICD criteria tend to be lower, and those using the DSM IV symptom criteria tend to be higher (see below). Cross culturally rates run from 1.7% to nearly 15%, with the highest rates reported in Hong Kong and Germany. Regardless of the base rates in given studies, the factor analyses of those data inevitably show that hyperactive and inattentive behaviors tend to cluster together, the two factors hold up in cross cultural studies. Practitioners of all types (primary care, subspecialty, psychiatry, and nonphysician mental health providers) vary greatly in the degree to which they actually use all of the Diagnostic and Statistical Manual of Mental Health Disorders, Fourth Edition (DSM-IV) criteria to diagnose ADHD. Researchers looking at base rates have used the DSM III, DSM III R, DSM IV, ICD-9 and ICD-10 criteria, and each of these yields differing results. Some of the confusion around DSM IV diagnostic rates comes from the use of what are termed "symptom criteria", whether or not a child has been identified as having 6 of 9 symptoms of inattention and/or hyperactivity, versus "full diagnostic criteria". The full diagnostic criteria include documentation of symptoms in two or more settings, documentation of impairment in two or more settings, onset before age seven and verification that the symptoms are not due to any other events in the child's life or not better explained by other disorders. When symptom criteria only, rates can become quite high, in some cases over 15%, but when the much more clearly defined and restrictive full criteria are used, it usually results in rates of around 5%. 29 All formal diagnostic criteria for ADHD were designed for diagnosing children (ages 6 to 12) and have not been adjusted for older children and adults. The criteria are not developmentally sensitive, and cross sectional data indicate that the symptoms, specifically those of hyperactivity, do decrease with age, and thus great care needs to be taken particularly when evaluating younger children. Despite these problems with criteria, the NIH Consensus conference on ADHD (1998) concluded "there is validity in the diagnosis of ADHD as a disorder with broadly accepted symptoms and behavioral characteristics that define the disorder." Diagnostic Procedures With a disorder that is on a continuum from a range of normal, typical behavior to one of severe impairment, accurate use of diagnostic criteria become critical so as to neither over diagnose or under diagnose. Even relatively minor changes in diagnostic criteria can result in large numbers of children being either excluded or included in the diagnostic categories. Within the past seven years, a number of professional organizations have developed guidelines for accurate diagnosis. In 1997, the American Academy of Child and Adolescent Psychiatry published the first set of diagnostic criteria. The recommendations were for a history and physical within the last twelve months, a detailed parent interview regarding current and past behaviors, the use of broad checklists to rule in or out other psychiatric problems, the use of ADHD specific checklists to rule in or out ADHD. In addition the AACAP recommended psychological or neuropsychological testing, as well as speech or occupational therapy evaluations if the initial interview suggested impairment in the areas of intellectual, academic, language or daily living skills areas. The American Medical Association (AMA) (1998) criteria were quite similar with essentially the same recommendations regarding history & physical, parent interview and ADHD specific checklists. They also recommended some review of intellectual and academic functioning, which could be done either through formal testing or review of school data. The most recent set of criteria were developed by the American Academy of Pediatrics (AAP),with an interdisciplinary committee, and corresponds most closely with the DSM IV, with the suggested use of checklists to document not only symptoms but also impairment across two situations, as well as the history and physical and detailed history from the parent. With regards to other testing and evaluation, AAP requires "evidence directly obtained from the classroom teacher regarding symptoms, functional impairment and co-existing conditions…review any reports from a school based multidisciplinary team" for the diagnosis. A further recommendation is that the evaluation of the child should include assessment of co-existing conditions, including anxiety, depression, oppositional or conduct problems, and learning disabilities, if there is evidence of problems in those areas. Table 1 Comorbid Disorder Estimated Prevalence Oppositional Defiant D/O Conduct Disorder Anxiety Disorder Depressive Disorder Learning Disability 35.2% 25.7% 25.8% 18.2% 18% (Hinshaw 1992) Confidence Limits on Prevalence 27.2-43.8% 12.8-41.3% 17.6-35.3% 11.1-26.6% 15-40% (AAP 2000) 30 While the AACAP AMA & AAP criteria all agree on the importance of the history and physical, a detailed history of the behaviors from the parent, the use of ADHD specific checklists, and data from both home and school, the implication is that additional psychological and educational testing is dependent on the presence of a possible co-morbidity. But as can be seen from Table 1, co-morbidities are quite common. Thus a reasonable case could be made that the clinical assessment of individuals who meet criteria for ADHD, and who do not respond to initial interventions, should include standardized assessments of intelligence, academic achievement, co-morbid mental disorders, family circumstances, and adaptive behaviors. The assessment of intelligence provides information that can be used with other measures of development to determine whether the apparently symptomatic behaviors are more frequent and severe than is typical of individuals at a comparable developmental level. In addition, standardized measures of intelligence and achievement can be used to determine whether the child is achieving at a level that is substantially below the level expected for their intelligence and age. At a minimum, the AAP criteria should be met, including the use of detailed checklists and clear documentation of impairment across situations, a detailed family history and a history and physical by the primary care provider. Etiology Prematurity and prenatal injury have been implicated in 10-20% of cases, many small preterm infants do well medically and in general developmental skills and then have difficulty in the early grades in school. Post natal brain injury, including head trauma in abuse or non-intentional injury has also been implicated in ADHD. Anatomically, group studies comparing patients diagnosed with ADHD with matched controls show that there is less well developed and smaller orbital prefrontal cortex on the right side, decreased striatum and globus pallidus in the basal ganglia and decreased size of the cerebellum. However scanning cannot accurately be used to diagnose ADHD because of the variability in size of these structures in the population. The suspected neurochemical deficiencies are in dopamine dysregulation and norepinephrine dysregulation. Family studies have shown that about 30% of siblings have ADHD, 20% of mothers, 25% of fathers and close to 90% of identical twins. Heritability is over 80%, and environmental factors are not strongly linked to ADHD. There is no convincing evidence for glucose metabolism, sugar consumption, thyroid problems or parenting practices as causing ADHD. There may be a small percentage (less than 5%) of preschool children adversely affected by food additives. Treatment While there are many claims for effective treatment, there are relatively few scientific studies of treatment effectiveness. For this paper, a scientific study is one that uses an experiment in which patients are randomly assigned to a treatment condition, assessed at baseline, post treatment, and possible at follow up. Also in a scientific study the assessment of behaviors of interest should not be influenced by group assignment, that is assessment should be done by raters blind to the treatment conditions. Single subject experiments can be done in which the subject is evaluated at baseline, during a treatment conditions and then back again at baseline. Typically a treatment is deemed effective if two independent research groups test the treatment in a group design which yields the same results. For single subject designs the standard is typically 8 to 10 well controlled individual cases. A true scientific study should be replicable, and the treatment variable(s) clearly identified. 31 Testimonials about effectiveness, and uncontrolled case studies do not meet the criteria of a scientific study. Treatments that have no scientific basis to date include: Individual psychotherapy including play therapy. Diet manipulation including the Feingold diet EEG biofeedback Sensory Integration Therapy Visual Therapy. This is not to say that these therapies are effective or ineffective, this says that there is no convincing scientific proof of effectiveness. Only a single psychosocial intervention has been supported by research. Behavior Therapy/Management was found to be superior to pill placebo in a single study, and was found superior to no treatment control conditions in 6 small studies and has been found to be effective in the larger MTA study (described in detail below). The evidence has not established the efficacy of Social Skills Training, “Parents are Teachers,” Parent Effectiveness Training, or SelfControl Training. According to the research, Behavior Therapy and Management, both in the classroom and at home, were the best-supported non-drug treatments. Further, the combination of behavior therapy and low dose medication may be similar to high dose medication for symptoms of ADHD, and superior for other co-morbid difficulties. Behavior Therapy/Management is relatively short term, has been delivered by therapists ranging from teachers and teacher’s aides to doctoral level therapists, and showed large effects in those studies reporting degree of change. Effect size estimates from two studies suggested that the average child at post- test scored better than 89% of children’s pre-treatment scores. Classroom Behavior Management tended to be more frequent and shorter term within the studies reviewed (e.g., daily implementation of a classroom time out or reward program), as opposed to Parent Training in behavioral interventions, which generally involved a therapist meeting weekly with parents to review similar behavior management strategies for the home. Although the follow up evidence was not reviewed, it appears that behavior management programs for Attention Deficit and Hyperactivity behavior problems may not need to be ongoing. The MTA study shows good maintenance over two years, and studies of children identified with oppositional or disruptive behavior (similar but not quite ADHD) have shown 5 and 10 year positive outcome. In contrast one study showed that when a classroom behavior program was withdrawn, children’s problems returned. It would appear that treatment needs to be of sufficient duration both to change the child behavior, but more importantly to bring about meaningful and self reinforcing change in the adults. Psychostimulants The medications of this class have similar side effects and safety. All have been in use in the US for more than twenty years. This class includes: Methylphenidate, available as Ritalin® and numerous generic brand names, Dextro-amphetamine, available as Dexedrine®, and mixed salts of dextroamphetamine and inactive levo-amphetamine, available as Adderall® The literature of over 160 replicated randomized controlled trials demonstrate robust short-time efficacy and a good safety profile when used for the symptoms of Attention DeficitHyperactivity 32 Disorder (ADHD). All of these studies focused on children meeting DSM III & III R criteria for ADHD with symptoms of both hyperactivity and inattention. Few studies lasting longer than 24 months have been conducted which demonstrate longer-term efficacy. Side effects are manageable with monitoring, dose and timing adjustment and matching medication to the needs of the patient. Generally, patients continue to respond to the same dose over time without a need to increase the dose; there is little evidence for the development of tolerance. As most of these medications have rapid absorption and rapid metabolism, they are short in duration with onset of effect within 30 minutes, peak within one to three hours, and rarely have an effect beyond five hours. Thus, most patients require multiple doses and demonstrate some “roller-coaster” effect; some have a “rebound” effect with short-term intense “wear off” effects. These effects are related to the short duration of effect and account for much of the reported poor compliance with use as prescribed on a multiple-dosing schedule. A multiple dosing of schedule II controlled medications also complicates management in schools, leading to further problems with compliance. Thus, compliance with the multiple doses that produce improved school and home behavior and performance is a concern with these short-acting medications. Stimulant-related adverse effects may occur early in intervention and are generally mild, short-lived, and responsive to dose and timing adjustments. Severe adverse effects, which necessitate discontinuation of medication, occur in less than 10% of patients. The most common adverse effects are delayed sleep onset, reduced appetite, stomachache, headache, and jitteriness. Rare side effects include perseverative behaviors, cognitive impairments, and motor and/or vocal tics, which usually respond to dose and timing adjustments. Hallucinosis, psychotic reactions, and mood disturbance have been reported only in overdoses and in patients receiving high doses of stimulants. Abuse is a concern, although emergency room reporting in the Drug Abuse Warning Network documents the prescription stimulant abuse rate at less than 1/40th of the rate for cocaine. Abusers generally prefer substances, which produce euphoria such as methamphetamine and cocaine. The majority of studies do not suggest that the use of prescribed stimulants for ADHD increases the risk of abuse. Methylphenidate has been released in a longer-acting product, Concerta®, and a longer acting Adderall XR has also been released. These may improve compliance with stimulant medication. In the NIMH Collaborative Multisite Multimodal Treatment Study (MTA) of children with ADHD, in the initial results of the first 14 months, compliance was highest in the study group receiving both monthly physician monitoring, as well as school and family behavioral management training. Compliance studies with a variety of medications demonstrate improved compliance with less frequent dosing; once a day dosing produces the greatest rate of compliance. Monitoring of stimulant medication includes observation and mental status monitoring as well as focused physical examinations with particular attention to movement disorders, tics, tremors, and a regular schedule of monitoring heart rate and blood pressure as well as stature and weight changes. The MTA indicates that after titration to an effective dose and timing schedule, monitoring can be reduced to less than five follow-ups per year, with parents and teachers aware of the medication and potential adverse effects. The regularity of schedule follow up is a factor in improving compliance. Parent and teacher completion of rating scales and school progress reports are important components of assessing the effects of stimulants and other interventions. The follow up studies of the MTA yields a picture of some potential side effects of continued stimulant use. There was evidence in the group that received medication for the entire 24 month period of some height and weight growth suppression that was not seen in either the children that never received medication or the groups that only received medication for part of the 24 month 33 period, approximately 1.0 cm per year. Weight suppression was approximately 2.5 kg in the first year and 1.2 kg in the second year. Combined Behavioral & Stimulant Treatment A small number of well designed studies have demonstrated the additive effects of behavioral therapy with stimulant treatment for children with the hyperactive or combined types of ADHD. In general, these studies show that stimulant medicine helps with the core symptoms of ADHD from the DSM IV, but not with many of the co-morbid oppositional behavioral problems. Those conflicts both at home and school tend to respond to the behavioral treatments. The largest of these studies is the MTA study. This is a multisite study with nearly 600 patients (100 at each site) assigned to one of four treatment groups. The groups were: 1. Medication only – which included titrating doses up to effective levels and monthly visits with a Psychiatrist. 2. Behavioral – A positive classroom based behavior program, a parent group to teach behavioral management skills, the Pelham summer camp program and a classroom aide for 20 weeks to implement behavior program at school. 3. Combined – all elements of Medication and Behavioral 4. Community Treatment – monitor only, family is to obtain treatment available in their community. There were multiple measures in several domains that could best be summarized as: ADHD symptoms, Oppositional behavior symptoms, academic achievement and positive social behavior with peers and parents. The initial results at 14 months found that for ADHD and Oppositional Symptoms improved for both medication groups, there was no improvement initially in academic achievement or social skills. One of the most important findings of the MTA study was the impact of behavioral therapy on the amount of medication required to reach therapeutic level. In that study each patient’s dose was titrated up until rating scales fell out of the clinical range. Subjects receiving medication only tended to require doses approximately 24% higher than those subjects receiving medication and behavioral therapy. Thus combined treatment yields equivalent initial outcome, improved long term outcome and at a much lower dosage of medicine. Recent data on the two year follow up show that the deterioration of effectiveness during the follow up from 14 months to 24 months was greatest for the two medication groups (Medication only and Combined Behavior & Medication). A “surprising number” of these families have stopped medication during the second year of the study. The Behavior only group maintained and showed further improvement. In general the four groups converged. Behavior therapy only seemed to show some advantages at two years in terms of parent satisfaction, adherence to treatment and improvement. 34 Analysis was made of medication use in the period from 14 to 24 months in the groups that self formed by their use of medication. Once again convergence was the rule, there seems to be no advantage to the 14 month period of intensive medication management. Alternative Treatments 35 Recent studies (Chan 2004 Boston Children's) indicate that the majority of parents of children who have ADHD have sought and are using a number of alternative treatments. While these indeed are popular among parents, their efficacy is not well established at this time. These treatments utilize a number of approaches. The oldest alternative approaches are diet manipulation, either by elimination diets, that is excluding foods or additives that are thought to contribute to the behavioral problems, or nutritional supplements, giving additional vitamins or other supplements to improve an existing behavioral difficulty. Elimination diets, frequently referred to as Feingold diets, are supported by a number studies with significant improvement in children who have the suspect food additives withheld compared to a disguised full diet including the additives, or deterioration by a challenge with the particular substance. These findings are in young children (preschool) and the behaviors are the hyperactive/impulsive, and not the inattentive behaviors. Group effects appear to be due to a subset of a small number of subjects who respond to the elimination diet, while the majority of children do not respond. Studies evaluating the elimination of sugar only has not been shown to have a positive effect, even studies with a duration of three weeks. One concern of elimination diets is the restriction of breadth of nutrients. On the other elimination of certain snack (junk) foods may have an overall health benefit. Nutritional supplements including amino acid, essential fatty acid, glyco-nutritional have not shown consistent positive effects in studies. Other supplements, L-carnitine, dimethylaminoethanol (DMAE) have shown some mild positive effects which warrant further study. Vitamin supplements have shown mixed effects with one positive outcome study and one with no effect. The major concern here is possible toxicity with high doses. Mineral supplements including iron, zinc & magnesium have had little research. In general studies of children who are already deficient in these minerals show improvement, but there is no data suggesting improvement in children who essentially have normal levels before supplementation. Deleading only appears to be effective in children who have elevated lead levels. Herbal therapies are very popular. At this time, however, there are no systematic data to support the use of hypericum, ginko biloba, or pycnogenol. There is a body of data, but open trials, that suggest the use of Chinese herbals prescribed by appropriately trained practitioners, but double blind studies are yet to be done. Acupuncture has not yielded any data to support its use with ADHD. All herbal and homeopathic treatments have some risk that need to be evaluated. EEG biofeedback is currently very popular and there is one open trial that supports its use, but whether this is a placebo effect or not needs to be determined by appropriate double blind research that would include a sham treatment. It warrants further study. Relaxation using EMG feedback has been shown to be effective in single cases as has relaxation training (often incorporated in group treatments) and meditation, but again double blind studies have not been done. There have been random assignment studies comparing massage and relaxation training with improvement in both, and better scores with massage with adolescents with ADHD. The magnitude of change here is higher than with other alternative treatments with the advantage of no potentially damaging side effects. 36 Various sensory stimulation/ sensory integration training including sensorimotor integration, optometric visual training, and interactive metronome have not controlled data to support their use. Antifungal treatment is usually done in conjunction with diet manipulation. This is based on the hypothesis that since most children with ADHD have a history of recurring otitis media, they have had treatment with antibiotics which has caused yeast overgrowth in the intestines. There has been systematic study to date. Thyroid disorders are found in a very small percentage of children with ADHD, and the AAP recommends evaluation for thyroid problems only if there are other indicators. Thyroid treatment for ADHD in children with normal thyroid functioning is not supported. In general of many of the alternative therapies, open trials of these methods yield treatment effects of 0.2-0.4, which is in the same range as placebo effects (source Treatment alternatives for ADHD. By L. Eugene Arnold, M.Ed. MD in Jensen, PS & Cooper, JR (2002) Attention Deficit Hyperactivity Disorder: State of the Science, Best Practices, Civic Research Institute) Informed Treatment Decisions. Because ADHD appears to be associated with significant functional impairment, the discussion of treatment options should weigh the potential risks and benefits of treatment against the potential risks of impairment in social, academic and occupational domains, and the risks of morbidity and mortality from accidents. While any form of treatment has risks, there are also risks inherent in not treating. Substantial evidence suggests that ADHD in children who have oppositional behavior are at risk for antisocial behavior in the adolescent years. Children with low academic achievement are at higher risk of school failure and drop out, and later occupational difficulties. Treatment Team Primary care clinicians cannot work alone in the treatment of school-aged children with ADHD. Ongoing communication with parents, teachers, and other school-based professionals is necessary to monitor the progress and effectiveness of specific interventions. Parents are key partners in the management plan as sources of information and as the child’s primary caregiver. Integration of services with psychologists, child psychiatrists, neurologists, educational specialists, developmental-behavioral pediatricians, and other mental health professionals may be appropriate for children with ADHD who have coexisting conditions and may continue to have problems in functioning despite treatment. Attention to the child’s social development in community settings other than school requires clinical knowledge of a variety of activities and services in the community. 1. Reiff MI, Banez GA, Culbert TP. Children who have attentional disorders: diagnosis and evaluation. Pediatr Rev. 1993;14:455–465 2. Barkley RA. Attention Deficit Hyperactivity Disorder: A Handbook for Diagnosis and Treatment. 2nd ed. New York, NY: Guilford Press; 1996 3. Zentall SS. Research on the educational implications of attention deficit hyperactivity disorder. Exceptional Child. 1993;60:143–153 4. Schachar R, Taylor E, Wieselberg MB, Ghorley G, Rutter M. Changes in family functioning and relationships in children who respond to methylphenidate. J Am Acad Child Adolesc Psychiatry. 1987;26:728–732 37 5. Almond BW Jr, Tanner JL, Goffman HF. The Family Is the Patient: Using Family Interviews in Children’s Medical Care. 2nd ed. Baltimore, MD: Williams & Wilkins; 1999:307–313 6. Biederman J, Faraone SV, Milberger S, et al. Predictors of persistence and remissions of ADHD into adolescence: results from a four-year prospective follow-up study. J Am Acad Child Adolesc Psychiatry. 1996; 35:343–351 7. Biederman J, Faraone SV, Spencer T, et al. Patterns of psychiatric comorbidity, cognition, and psychosocial functioning in adults with attention deficit hyperactivity disorder. Am J Psychiatry. 1993;150: 1792–1798 8. Baumgaertel A, Copeland L, Wolraich ML. Attention deficithyperactivity disorder. In: Disorders of Development and Learning: A Practical Guide to Assessment and Management. 2nd ed. St Louis, MO: Mosby Yearbook, Inc; 1996:424–456 9. Cantwell DP. Attention deficit disorder: a review of the past 10 years. J Am Acad Child Adolesc Psychiatry. 1996;35:978–987 10. American Psychiatric Association. Diagnostic and Statistical Manual for Mental Disorders. 2nd ed. Washington, DC: American Psychiatric Association; 1967 11. American Psychiatric Association. Diagnostic and Statistical Manual forMental Disorders. 3rd ed. Washington, DC: American Psychiatric Association; 1980 12. American Psychiatric Association. Diagnostic and Statistical Manual for Mental DisordersRevised. 3rd ed. Washington, DC: American Psychiatric Association; 1987 13. American Psychiatric Association. Diagnostic and Statistical Manual for Mental Disorders. 4th ed. Washington, DC: American Psychiatric Association; 1994 14. Drug Enforcement Agency. Washington, DC (personal communication) 15. August GJ, Garfinkel BD. Behavioral and cognitive subtypes of ADHD. J Am Acad Child Adolesc Psychiatry. 1989;28:739–748 16. August GJ, Realmuto GM, MacDonald AW III, Nugent SM, Crosby R. Prevalence of ADHD and comorbid disorders among elementary school children screened for disruptive behavior. J Abnorm Child Psychol. 1996; 24:571–595 17. Bird H, Canino G, Rubio-Stipec M, et al. Estimates of the prevalence of childhood maladjustment in a community survey in Puerto Rico. Arch Gen Psychiatry. 1988;45:1120–1126 18. Cohen P, Cohen J, Kasen S, Velez CN. An epidemiological study of disorders in late childhood and adolescence I: age and gender-specific prevalence. J Child Psychol Psychiatry. 1993;34:851–867 19. King C, Young RD. Attentional deficits with and without hyperactivity: teacher and peer perceptions. J Abnorm Child Psychol. 1982;10:483–495 20. Kuperman S, Johnson B, Arndt S, Lingren S, Wolraich M. Quantitative EEG differences in a nonclinical sample of children with ADHD and undifferentiated ADD. J Am Acad Child Adolesc Psychiatry. 1996;35: 1009–1017 21. Newcorn J, Halperin JM, Schwartz S, et al. Parent and teacher ratings of attention-deficit hyperactivity disorder symptoms: implications for case identification. J Dev Behav Pediatr. 1994;15:86–91 22. Shaffer D, Fisher P, Dulcan MK, et al. The NIMH Diagnostic Interview Schedule for Children Version 2.3 (DISC-2.3): description, acceptability, prevalence rates, and performance in the MECA study. Methods for the Epidemiology of Child and Adolescent Mental Disorders Study. J Am Acad Child Adolesc Psychiatry. 1996;35:865–877 23. Shekim WO, Kashani J, Beck N, et al. The prevalence of attention deficitdisorders in a rural midwestern community sample of nine-year-oldchildren. J Am Acad Child Adolesc Psychiatry. 1985;24:765–770 24. Green M, Wong M, Atkins D, et al. Diagnosis of Attention Deficit/Hyperactivity Disorder: Technical Review 3. Rockville, MD: US Department of Health and Human Services, Agency for Health Care Policy and Research; 1999. Agency for Health Care Policy and Research publication 99-0050 38 25. Wolraich ML, Hannah JN, Pinnock TY, Baumgaertel A, Brown J. Comparison of diagnostic criteria for attention deficit/hyperactivity disorder in a county-wide sample. J Am Acad Child Adolesc Psychiatry. 1996; 35:319–324 26. Wolraich M, Hannah JN, Baumgaertel A, Pinnock TY, Feurer I. Examination of DSM-IV criteria for attention deficit/hyperactivity disorder in a county-wide sample. J Dev Behav Pediatr. 1998;19:162–168 27. Gibbs N. Latest on Ritalin. Time. 1998;152:86–96 28. Safer DJ, Zito JM, Fine EM. Increased methylphenidate usage for attention deficit disorder in the 1990s. Pediatrics. 1996;98:1084–1088 29. Rappley MD, Gardiner JC, Jetton JR, Houang RT. The use of methylphenidate in Michigan. Arch Pediatr Adolesc Med. 1995;149:675–679 30. Wolraich ML, Lindgren S, Stromquist A, et al. Stimulant medication use by primary care physicians in the treatment of attention deficit hyperactivity disorder. Pediatrics. 1990;86:95– 101 Carlson, C.L., Pelham, W.E., Milich, R., & Dixon, J. (1992). Single and combined effects of methylphenidate and behavior therapy on the classroom performance of children with AttentionDeficit Hyperactivity Disorder. Journal of Abnormal Child Psychology, 20, 213-232. Dubey, D.R., O’Leary, S.G., & Kaufman, K.F. (1983). Training parents of hyperactive children in child management: A comparative outcome study. Journal of Abnormal Child Psychology, 11, 229-246. Horn, W.F., Ialongo, N.S., Pascoe, J.M., Greenberg, G., Packard, T., Lopez, M., Wagner, A., & Puttler, L. (1991). Additive effects of psychostimulants, parent training, and self-control therapy with ADHD children. Journal of the American Academy of Child and Adolescent Psychiatry, 30, 233-240. TABLE 1. Diagnostic Criteria for ADHD A. Either 1 or 2 1) Six (or more) of the following symptoms of inattention have persisted for at least 6 months to a degree that is maladaptive andinconsistent with developmental level: Inattention a) Often fails to give close attention to details or makes careless mistakes in schoolwork, work, or other activities b) Often has difficulty sustaining attention in tasks or play activities c) Often does not seem to listen when spoken to directly d) Often does not follow through on instructions and fails to finish schoolwork, chores, or duties in the workplace (not due to oppositional behavior or failure to understand instructions) e) Often has difficulty organizing tasks and activities f) Often avoids, dislikes, or is reluctant to engage in tasks that require sustained mental effort (such as schoolwork or homework) g) Often loses things necessary for tasks or activities (eg, toys, school assignments, pencils, books, or tools) h) Is often easily distracted by extraneous stimuli i) Is often forgetful in daily activities 2) Six (or more) of the following symptoms of hyperactivity-impulsivity have persisted for at least 6 months to a degree that is maladaptive and inconsistent with developmental level: Hyperactivity a) Often fidgets with hands or feet or squirms in seat b) Often leaves seat in classroom or in other situations in which remaining seated is expected c) Often runs about or climbs excessively in situations in which it is inappropriate (in adolescents or adults, may be limited to subjective feelings of restlessness) 39 d) Often has difficulty playing or engaging in leisure activities quietly e) Is often “on the go” or often acts as if “driven by a motor” f) Often talks excessively Impulsivity g) Often blurts out answers before questions have been completed h) Often has difficulty awaiting turn i) Often interrupts or intrudes on others (eg, butts into conversations or games) B. Some hyperactive-impulsive or inattentive symptoms that caused impairment were present before 7 years of age. C. Some impairment from the symptoms is present in 2 or more settings (eg, at school [or work] or at home). D. There must be clear evidence of clinically significant impairment in social, academic, or occupational functioning. E. The symptoms do not occur exclusively during the course of a pervasive developmental disorder, schizophrenia, or other psychotic disorder and are not better accounted for by another mental disorder (eg, mood disorder, anxiety disorder, dissociative disorder, or personality disorder). Code based on type: 314.01 Attention-Deficit/Hyperactivity Disorder, Combined Type: if both criteria A1 and A2 are met for the past 6 months 314.00 Attention-Deficit/Hyperactivity Disorder, Predominantly Inattentive Type: if criterion A1 is met but criterion A2 is not met for the past 6 months 314.01 Attention-Deficit/Hyperactivity Disorder, Predominantly Hyperactive, Impulsive Type: if criterion A2 is met but criterion A1 is not met for the past 6 months 314.9 Attention-Deficit/Hyperactivity Disorder Not Otherwise Specified Pediatricians and other primary care clinicians frequently are asked by parents and teachers to evaluate a child for ADHD. RECOMMENDATION 1: Primary care clinicians should establish a management program that recognizes ADHD as a chronic condition (strength of evidence: good; strength of recommendation: strong). RECOMMENDATION 2: The treating clinician, parents, and the child, in collaboration with school personnel, should specify appropriate target outcomes to guide management (strength of evidence: good; strength of recommendation: strong). RECOMMENDATION 3: The clinician should recommend stimulant medication (strength of evidence: good) and/or behavior therapy (strength of evidence: fair), as appropriate, to improve target outcomes in children with ADHD (strength of recommendation: strong). RECOMMENDATION 4: When the selected management for a child with ADHD has not met target outcomes, clinicians should evaluate the original diagnosis, use of all appropriate treatments, adherence to the treatment plan, and presence of coexisting conditions RECOMMENDATION 5: The clinician should periodically provide a systematic follow-up for the child with ADHD. Monitoring should be directed to target outcomes and adverse effects by 40 obtaining specific information from parents, teachers, and the child (strength of evidence: fair; strength of recommendation: strong). 41 K. Allen’s Corrections / Omissions to the minutes for the Nov. 3 meeting. 1. “Kathy expressed her concerns regarding studies done in North Carolina and Virginia regarding the number of children receiving medication and the possible implications for Delaware.” I believe I stated that submitted studies from North Carolina and Virginia concluded there was over diagnosis in those states and that Delaware gives more ADHD medications than both. 2. “Kathy suggested that even if there is a misdiagnosis, everyone would benefit from the effects of the medication” The implication is incorrect. I stated that studies have shown that stimulant medication improves focus and concentration in individuals without ADHD. This was as reported in the study by Vicki Snider in the context that response to medication cannot be used as the sole diagnostic criteria for ADHD. I in no way think children without a full work up and proper diagnosis should get medication. 3. “Dr. Policastro referred to a survey he remembered being done a few years ago by school nurses” Dr. Policastro remembered the study to have shown very high numbers in Northern Delaware. He mentioned 21% but said he could not be sure as it was a while ago. I then emphatically asked everyone if that was not over diagnosis? I don’t believe anyone answered. 4. “The school psychologist is not a medical doctor and cannot prescribe medication or diagnose. The psychologist’s role is in identification and assessment.” However, when I asked for clarification she stated that school specialists can make some sort of “educational assessment of ADHD” which although is not a diagnosis, can be given to the medical doctor for his use in making the diagnosis. She also agreed that a teacher may discuss problems with a parent, recommend the child see their doctor and then complete evaluation forms provided by a parent without notification to other school personnel. 5. After Debbie Puzzo stated her personal experience I stated that I in no way wanted to prevent a child who is on the medication from receiving it, nor did I want to get in the way of a parent and Doctor doing what is right for a child. I simply want to make sure parents will not have their children misdiagnosed and then be pressured to put them on stimulants they don’t feel are needed. 42 Attachment C: ADD/ADHD Task Force Meeting Monday, November 22, 2004 Minutes Members Present: Dave Dryden, Co-Chair, Office of Narcotics and Dangerous Drugs Linda Wolfe, Co-Chair, appointed by the Secretary of Department of Education Genevieve Tighe, appointed by CHADD Andrea Rubinoff, appointed by the Secretary of DSCYF W. Douglas Tynan, appointed by A.I. duPont Hospital and the Delaware Psychological Association Anthony Policastro, M.D., appointed by Medical Society of Delaware Debbie Puzzo, Task Force Administrator for the House Majority Caucus Absent: Kathleen Allen, appointed by the Speaker of the House of Representatives INTRO Co-chair Dave Dryden called the meeting to order at 2:15 pm. He thanked everyone for attending the meeting. Kathy Allen was unable to attend the meeting due to a family emergency. She submitted comments for this meeting (attached) and Corrections/Omissions to the minutes for the Nov. 3 meeting. The later was attached to the November 3, 2004 minutes and included as part of the record. MINUTES Minutes from the November 3, 2004 meeting were approved and accepted with the inclusion of comments/omissions submitted by Kathy Allen as page 21. ISSUE CARRIED FORWARD FROM PREVIOUS MEETING The Role of the School was addressed later in this meeting during the discussion regarding recommendations. ACTION ITEMS FROM PREVIOUS MEETING 1. Instructional support team guidelines from random districts Linda distributed copies of documents from 3 districts regarding the referral process. (Permission to Evaluate – Laurel School District; General Procedures for Special Education – Caesar Rodney School District; and Referral for Special Services – Brandywine School District). Linda stated that procedures are used only for referral for special service, not for vision, hearing or other medical, unless the medical condition interfered with the student’s learning and an IEP was developed due to the condition (example – blindness). 2. Survey of school nurses At the previous meeting, Dr. Policastro stated that he remembered seeing a survey of school nurses relative to ADHD. Unsuccessful attempts were made by Martha Brooks (DOE), Dr. Policastro (member), Linda Wolfe (DOE member) and Deborah Puzzo (staff) to locate the survey. Linda wondered if it was a survey about controlled medications from the early 1990s, but this survey was not located either. The group agreed that there is no need to search for this document as the data from this survey would be outdated. 43 Linda was able to locate and share a survey the Division of Public Health did in 2001. It was a voluntary, self reporting survey sent to school nurses in public and private schools. The data was reported by state, not districts. The information received was used in a report entitled “The Burden of Diabetes in Delaware”. The comprehensive report did contain some information about ADHD. Linda read the following excerpts: “School Summary Results Prevalence of chronic disorders The reports summarized in Table 1 covered 82,245 students in Delaware primary and secondary schools in October 2001. The majority (64%) of these students went to schools in New Castle County; 21% and 15% went to Kent and Sussex County schools, respectively. The schools reported large numbers of students with specific chronic conditions. The most commonly reported were asthma, attention deficit hyperactivity disorder, and allergies. … Attention Deficit/Hyperactivity Disorder (ADHD) was the third most frequently reported condition of those surveyed. The statewide prevalence was 5.3%. Several epidemiologic studies in school-age children have shown similar prevalence rates. For example, Scahill and Schwab-Stone, in reviewing 19 studies, concluded the best estimate of prevalence was 5-10%. Male gender has also been associated with increased rates of ADHD. There were nearly three times as many males as females reported to have ADHD. … Treatment ADHD is by far the most treatment-intensive condition among those surveyed. Over half of students with ADHD required daily medication, and that amounted to 2.7% of all students. These rates are consistent with those reported in Maryland in 1998.8 Over 1,000 students with allergic conditions required medication, but rarely on a daily basis. While nearly half of the children with asthma required medication, only 8.5% needed it daily. Most children with diabetes needed medication, but not always daily. One quarter of the children with psychiatric diagnoses and a smaller proportion of those with depression required daily drugs. Presumably, the drugs reported were those actually administered by school nursing staff.” Dr. Tynan stated that Nemours has agreed to review the data from the A.I. duPont pediatric practices. The caveat is that those practices are set up to serve the low income population, so the numbers will not represent the higher economic groups. They have also agreed to survey some of the practices in Florida for comparison. Linda stated that when she was in the schools, she did not see a difference between children on Medicaid and the other children in the school, as far as the children on Medicaid would be less likely to have the medication. Nationally, there is no difference. 3. Status of HR1170 from Congressman Castle’s office Debbie Puzzo distributed a press release from Congressman Castle’s office regarding HR 1170 – the Child Medication Safety Act. This legislation passed the U.S. House by a vote of 425 to 1, but it has not passed the U.S. Senate. The bill requires states to establish policies and procedures prohibiting school personnel from requiring a child to take medication in order to attend school. Linda stated that the Delaware DOE Regulations already support such policies and procedures. Dr. Policastro stated that very few parents understand that when they attend an IEP meeting, although they are given a list of their rights and terms of appeal and such, they really don’t understand the fact that it is their signature or lack of signature that controls the situation. 44 4. Remaining questions for the experts Linda stated that there are still big questions about the Delaware numbers of stimulant medications – how many and why? We don’t know how many adults. The Task Force believes the drug monitoring program would allow us to address and understand the numbers. There is a need to reference these questions in the report. Dave referred to the comments that were submitted by Kathy Allen (attached). The group agreed that these comments centered around the discussion of the Delaware numbers. Given the information available, as evidenced by research and expert testimony, the Task Force is unable to explain the numbers and thus the information was not pertinent to where the group discussion is now; i.e. specifically addressing the Task Force charge from the House Resolution. Dave stated that Ms. Allen’s question “Can anyone in the group offer anything to give parents better guidance?” is where this group is heading today with its recommendations. RECOMMENDATION FOR TASK FORCE REPORT Linda led the discussion on identifying specific recommendations for the Task Force report. She stated that the recommendations that were submitted by members prior to this meeting had been separated into categories: Teacher/school referrals; Positive Behavior Support; Reporting; Educate teachers /parents/physicians; Treatment; and Prescription Drug Monitoring. A copy of the charge of the Task Force was distributed to all members. The charge is “to study the patterns of treatment of Attention Deficit Disorder and Attention Deficit/Hyperactivity Disorder in Delaware’s school-aged children, and the role of school personnel in the recommendation process for use of psychotropic and sympathomimetic medications on schoolaged children.” Issue: Teacher/School referrals Discussion: The group agreed that any referral should be in writing. The best thing a teacher can do is provide a summary of “observable behaviors” for problematic students. This information helps point doctors in a medical direction – not just targeted at ADHD. Teachers and/or school personnel should never recommend or suggest a course of medical treatment or medical diagnosis for any child. The referral process should be the same as the referral process used for other medical conditions, such as vision and hearing. There should be an open lines of communication between the physicians and the schools (mindful of HIPAA - parents are the channel of communication between the school and the doctor.) Further, the group felt that the communication should be standardized in some fashion and that a copy of the referral should be maintained. Action: Recommendation. The procedure for recommending a student for an evaluation should mimic the current process used for referring a student for hearing or vision screening. The nurse should receive a written referral from the teacher. The nurse should meet with the parents and/or the teacher to discuss the referral. This referral form should be standardized and a copy of the completed form should remain with the nurse. Teachers and other school personnel play an important role in providing medical personnel, when requested, with information regarding “observable behaviors” and/or ongoing feedback concerning problematic students. Issue: Hold teachers accountable for high number of referrals. Discussion: The group agreed that no teacher should be singled out based on the number of referrals he/she makes. Some teachers are better observers and recognize symptoms better than 45 others. Additionally, some teachers work with specific groups of children which may have higher rates of a given medical diagnosis. Action: None Issue: A parent’s decision not to medicate a child should not prohibit the child from attending class or any school related activity. Discussion: IDEA is very clear that children have equal access to all educational opportunities. This statement reflects current DOE regulation and policy. Action: None necessary, as this policy is already in place. Issue: Provide parents with information about ADHD. Discussion: Currently, when requested, nurses give information to parents about other conditions. The procedure for providing literature about ADHD, when requested, should mimic the current policy. The information that is provided must be from a reliable and objective source. Action: Recommendation. The distribution of any information should mimic the policy that is currently in place for asthma, diabetes, vision, hearing and other conditions. If requested, a parent or teacher should be given information about ADHD from a reliable source and/or be directed to the local chapter of CHADD or the CHADD website. Issue: Communication and Collaboration between schools and the medical community Discussion: School personnel are in unique and important positions to provide feedback on children’s behavior. Observation is important to both the diagnosis and ongoing treatment of the child with ADHD. Physicians and schools should work collaboratively when appropriate and in the best interest of the treatment of a child. Action: Recommendation. Encourage schools and providers to work collaboratively and address any communication barriers. Issue: The Positive Behavior Support Program (PBS) in the schools. Discussion: PBS is a critically important program that will address many of the problems that this group has concerns about. For children diagnosed with ADHD, regardless of whether they are medicated or not, PBS is a valid treatment program. Good behavioral strategies are a viable treatment that can be done at school regardless of eventual diagnosis and other treatments. Dr. Tynan volunteered to help create a module to add to the PBS training. Action: Recommendation. Encourage the Department of Education to educate school personnel in the areas of positive behavior support. This education should include a training module on ADHD and related behavior. Issue: Physicians and psychiatrists who diagnose any child with ADD or ADHD should report the total number of those children to the respective school districts where the children attend school. This information should not include a child’s name nor violate the HIPAA right to privacy. Discussion: This may not be a practical thing to do. Most doctors’ offices do not have sophisticated enough computers to provide this data. Reporting would be on a volunteer basis and the data would then be skewed. If reporting was mandated – who would police? What would schools do with the information? It is not assumed that high numbers are mis-diagnoses. Action: The task force agrees that reporting is important and as such, the task force will recommend legislation to establish a Prescription Monitoring Program in Delaware. Issue: The physician community should be better informed about the diagnosis and treatment of ADHD. Discussion: Dr. Policastro stated that there was an article in the September Pediatrics that looked at the American Association of Pediatrics’ guidelines and evaluated what percentage 46 of the guidelines were being followed by the typical physician in practice. Approximately 40% of the physicians are following the AAP guidelines. There is a need for physicians to be better informed. The Board of Medical Practices would not be the appropriate organization. Action: The task force agrees that if Delaware had a Prescription Monitoring Program, information could be sent directly to stimulant prescribing doctors via this network. Issue: Mental Health Parity Discussion: Mental health parity is related to the insurance issue. The mental health parity part of this is if someone has a mental health problem – it should be paid for by the insurance companies. Many times what happens is that no one wants to pay for the evaluation or the testing of the child is limited to the insurance coverage. The issue remains – is an evaluation a medical problem, mental health problem or educational/ADA and IDEA issue? This has not been determined so there are opportunities for insurers to not pay. Medicaid ceased providing coverage in July 2004. Action: Recommendation: Draft a resolution or bill urging the Insurance Commissioner to provide coverage for full evaluations including psychological and other testing. Issue: Prescription Monitoring Program Discussion: Prescription Monitoring Program is a mechanism that is gaining wide-spread support across the U.S. Among other things, it would be able to provide information about the number of children under 18, who receive stimulant medication. Such a program would have accurate information throughout the state or any given region. With that information, specific interventions could be developed if warranted. The established program should support the necessary funding through current registration funding as established in 16 De. C. 4731. Action: Recommendation. The Task Force unanimously agreed to strongly recommend that the Legislature draft legislation establishing a Prescription Monitoring Program in the State of Delaware. Debbie provided the members with various ways the Task Force can address recommendations. The task force may: 1) strongly recommend; 2) urge; 3) encourage; 4) strongly encourage; 5) draft a resolution (for example draft a resolution encouraging DOE to do something); and/or 6) The task force can also have legislation drafted as a result of a recommendation. The group discussed the composition of the Report. The Report should contain the following information: 1) Charge of the Task Force; 2) Brief synopsis of the work done by the Task Force; 3) Briefly address the issue of the numbers. Mention there is no way to make sense of the numbers. Many studies and pieces of literature from different sources were reviewed and discussed, questions remain regarding the significance or reliability of the numbers; 4) Recommendations; 5) American Academy of Pediatrics’ guidelines for diagnosis and treatment; 6) Approximately one half page explaining the Positive Behavior Support Program; 7) Approximately one half page explaining the Prescription Monitoring Program; 8) Approximately one half page explaining the role of the school personnel; and 9) Copies of minutes from all meetings. CLOSING 47 It was determined that the Task Force will not meet again. A draft report with recommendations will be circulated to the members for comments. It is anticipated that the report will be submitted in early to mid-January. The meeting was adjourned at 4:00 pm Respectfully Submitted by: Debbie Puzzo December 6, 2004 48 For the Nov. 22 meeting -Submitted by Kathleen Allen In the last meeting minutes, it was stated that Linda Wolf suggested that Delaware’s numbers are higher because we do a better job of reporting. I need to point out that these numbers are not reported by Delaware. They are generated by drug sales to the state as reported to the DEA from the manufacturer through an automatic system. The same system reports for all states. I want to add for the official minutes that a ranking of all 2994 counties in the US was completed by the Cleveland Plain Dealer newspaper using data obtained through ARCOS through the Freedom of Information Act. New Castle County ranked 84 (top 2.8%). Sussex and Kent rated 649 and 651 respectively. The data reflects drug consumption from 1997 through 1999. Dr. Tynan’s Friday posting indicated we had estimates of 15% prescription rates for stimulants based on parent report. I am curious, from when and where did this number come? I also want to point out that Dr. Safer’s comment on the ARCOS number holds true for many states, but not the higher users (in my opinion). ARCOS data is available for every year between 1997 an 2002. Of the top ten users for methylphenidate in 2002, six states made the top ten list for all years reported. Delaware has been in the top six for every year reported. For DLamphetamine and D-amphetamine Delaware is even more consistent, making the top four for both drugs in all years reported. Dr. Safer recommended that we look at the study by Cox from Pediatrics Feb. 2003. I had given a copy of the abstract of that article to all members at the first meeting. It does state that “compared with children living in the Western region of the country, children living in the Midwest and South were more likely to consume at least one stimulant medication”. It doesn’t mention the East Cost. The final conclusion is geographic variation despite controlling for important predictors such as age and gender. I included it for that reason. But it only reported on geographic variance in the US. It does not address that large geographic variance can occur from community to community in the same state. According to the rankings from the Cleveland Plain Dealer, in a small state like Massachusetts some counties rank very high (no. 2 for Martha’s Vineyard, and some much lower (no. 834 for Hampden). Therefore any ranking by state may not accurately reflect what is happening in every community. There still may be under diagnosis and over diagnosis. The full text of the article does not provide a ranking for NH, VT, IA, DE or SD due to small sampling numbers in those states. These states are in the top ten users for methylphenidate for 1999 (the year studied) per ARCOS. The most consistent numbers I have found for the prevalence rate of ADHD (as diagnosed by the AAP recommended criteria) seems to be 3-7%. I would like the panel to comment on what levels would indicate possible over diagnosis in their opinion. I have also noted in many studies that medication rates for minorities are lower than that of white children. Dr. LeFever’s study provided by Dr. Tynan indicates an overall medication rate of 8% and 10% of students in grades 2-5 in the districts she studied in Virginia. This broke down to 16.8% and 16.6 % of white males being medicated, versus 9.1% and 8.9% of black males. Dr. LeFever concluded that this represents over diagnosis. Does the panel feel that this ratio could be similar for Delaware? Does anyone believe that 16.6% is an appropriate rate for any group? I hope the Prescription Drug Monitoring Plan that everyone seems to agree on is up and running soon. I assume it will give us accurate numbers for age and sex and allow sorting by zip code. My strongest recommendation is for this program to be in place as soon as possible. I know there has been considerable disagreement with my recommendations as they may fall outside our charge in the task force. Actually, I don’t know that we were charged with making recommendations. I provided mine because we were asked by the chair at the last meeting to do so. I am trying only to get information to parents. Nothing I have recommended would come between a student in need and medication the parent and the physician feels 49 warranted. Everyone seems to agree that teacher’s putting their concerns in writing is a good thing. But there is resistance to making them accountable for the number of referrals they make. This is important. If referral for children they think are in need is part of their job, they need to be held accountable for it. It will not single out any teacher that is not making higher than expected referrals. If a teacher is referring 5 out of 10 boys every year, they need more education on the subject. Teachers should never be allowed to recommend treatment. I have a B.S. in Medical Technology, advanced certifications and over 20 years experience in transfusion medicine and am in no way qualified or allowed to recommend transfusion treatment to a patient or parent even though I have an educated opinion. I may be fired for doing so. Because the diagnosis is subjective, because there is wide geographic variance in the diagnosis rates in different communities and studies have indicated over diagnosis, it appears to me that a parent has a right to know the controversy and the diagnosis rate in their community. But I understand this information would be hard to agree on and disseminate, so I can see why it may not be practical. Is there anything in place now to prevent over diagnosis? I have always felt the checklists to be misleading. They offer scales of what can be normal behavior and ask the parent to rate their child. But they are only supposed to rate the behavior if it is maladjusted or age inappropriate. If the parent isn’t given the proper directions or doesn’t read the directions clearly, they are likely to over rate their child's symptomatic behavior. Can anyone in the group offer anything to give parents better guidance? Even being given a brief written explanation of the AAP guidelines would be helpful to a parent going through this process. I was given all needed information at AI duPont but this may not be standard. Although it was not in the last meeting minutes, I believe Dr. Policastro mentioned that pediatricians and doctors are not paid for sufficient visits to do the job as recommended by the AAP guidelines. This may also be an important part of the problem. Full work ups as provided by AI duPont are not always covered by insurers. AETNA, the insurer that covers Dupont Inc. no longer covers this. ************************************************** 50 Submitted on January 3, 2005 by W. Douglas Tynan, Ph.D., ABPP I had requested a data search for all of our duPont Pediatric Practices in Delaware for ADHD diagnosis and stimulant prescriptions for all children between the ages of 7 and 12 (to compare with the often cited North Carolina studies) back when we started this. The initial data was just sent to me from Nemours NCMP in Jacksonville, but the preliminary findings were based on this sample of 25,145 children between 7 & 12 seen in our practices in 2004, 3.3% have a diagnosis of ADHD, which fits with my clinical experience in the primary care clinics. This is also somewhat higher but in the same ballpark of a study I did about 6 years ago in a large practice in Anne Arundel County Maryland, where we had 2.9% formally diagnosed with ADHD, but about 8% of kids idenitified by parents on checklists as having ADHD symptoms. This points to the importance of the type of data that we look at. Many of the studies with higher reported rates used parent report of a diagnosis, school nurse report of a diagnosis and prescription, or the estimates derived by amount of drug prescribed divided by the number of children. Ultimately, I think, surveying practices and finding out how many children are actually diagnosed with ADHD and number of prescriptions written, for children, would be the most reliable data source. Why other methods have much higher rates reported is something I cannot quite explain. 51 Attachment D The year 2000 Diagnostic & Statistical Manual for Mental Disorders (DSM-IVTR) provides criteria for diagnosing ADHD. The criteria are presented here in modified form in order to make them more accessible to the general public. They are listed here for information purposes and should be used only by trained health care providers to diagnose or treat ADHD. DSM-IV Criteria for ADHD I. Either A or B: A. Six or more of the following symptoms of inattention have been present for at least 6 months to a point that is disruptive and inappropriate for developmental level: Inattention 1. Often does not give close attention to details or makes careless mistakes in schoolwork, work, or other activities. 2. Often has trouble keeping attention on tasks or play activities. 3. Often does not seem to listen when spoken to directly. 4. Often does not follow instructions and fails to finish schoolwork, chores, or duties in the workplace (not due to oppositional behavior or failure to understand instructions). 5. Often has trouble organizing activities. 6. Often avoids, dislikes, or doesn’t want to do things that take a lot of mental effort for a long period of time (such as schoolwork or homework). 7. Often loses things needed for tasks and activities (e.g. toys, school assignments, pencils, books, or tools). 8. Is often easily distracted. 9. Is often forgetful in daily activities. B. Six or more of the following symptoms of hyperactivity-impulsivity have been present for at least 6 months to an extent that is disruptive and inappropriate for developmental level: Hyperactivity 1. Often fidgets with hands or feet or squirms in seat. 2. Often gets up from seat when remaining in seat is expected. 3. Often runs about or climbs when and where it is not appropriate (adolescents or adults may feel very restless). 4. Often has trouble playing or enjoying leisure activities quietly. 5. Is often “on the go” or often acts as if “driven by a motor.” 6. Often talks excessively. Impulsivity 1. Often blurts out answers before questions have been finished. 2. Often has trouble waiting one’s turn. 52 3. Often interrupts or intrudes on others (e.g. butts into conversations or games). II. Some symptoms that cause impairment were present before age 7 years. III. Some impairment from the symptoms is present in two or more settings (e.g. at school/work and at home). IV. There must be clear evidence of significant impairment in social, school, or work functioning. V. The symptoms do not happen only during the course of a Pervasive Developmental Disorder, Schizophrenia, or other Psychotic Disorder. The symptoms are not better accounted for by another mental disorder (e.g. Mood Disorder, Anxiety Disorder, Dissociative Disorder, or a Personality Disorder). Based on these criteria, three types of ADHD are identified: 1. ADHD, Combined Type: if both criteria 1A and 1B are met for the past six months 2. ADHD, Predominantly Inattentive Type: if criterion 1A is met but criterion 1B is not met for the past six months 3. ADHD, Predominantly Hyperactive-Impulsive Type: if criterion 1B is met but criterion 1A is not met for the past six months American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision, Washington, DC, American Psychiatric Association, 2000. 53 Attachment E American Academy of Pediatrics’ Guideline for the Diagnosis of ADHD The American Academy of Pediatrics’ guideline contains the following recommendations for diagnosis of ADHD: 1) in a child 6 to 12 years old who presents with inattention, hyperactivity, impulsivity, academic underachievement, or behavior problems, primary care clinicians should initiate an evaluation for ADHD; 2) the diagnosis of ADHD requires that a child meet Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition criteria; 3) the assessment of ADHD requires evidence directly obtained from parents or caregivers regarding the core symptoms of ADHD in various settings, the age of onset, duration of symptoms, and degree of functional impairment; 4) the assessment of ADHD requires evidence directly obtained from the classroom teacher (or other school professional) regarding the core symptoms of ADHD, duration of symptoms, degree of functional impairment, and associated conditions; 5) evaluation of the child with ADHD should include assessment for associated (coexisting) conditions; and 6) other diagnostic tests are not routinely indicated to establish the diagnosis of ADHD but may be used for the assessment of other coexisting conditions (e.g., learning disabilities and mental retardation). This clinical practice guideline is not intended as a sole source of guidance in the evaluation of children with ADHD. Rather, it is designed to assist primary care clinicians by providing a framework for diagnostic decision making. It is not intended to replace clinical judgment or to establish a protocol for all children with this condition and may not provide the only appropriate approach to this problem. This information is from the American Academy of Pediatrics website: http://aappolicy.aappublications.org/cgi/content/full/pediatrics%3b105/5/1158 54 Attachment F American Academy of Pediatrics’ Guideline for the Treatment of ADHD The American Academy of Pediatrics’ guideline contains the following recommendations for the treatment of a child diagnosed with ADHD: Primary care clinicians should establish a treatment program that recognizes ADHD as a chronic condition. The treating clinician, parents, and child, in collaboration with school personnel, should specify appropriate target outcomes to guide management. The clinician should recommend stimulant medication and/or behavior therapy as appropriate to improve target outcomes in children with ADHD. When the selected management for a child with ADHD has not met target outcomes, clinicians should evaluate the original diagnosis, use of all appropriate treatments, adherence to the treatment plan, and presence of coexisting conditions. The clinician should periodically provide a systematic follow-up for the child with ADHD. Monitoring should be directed to target outcomes and adverse effects, with information gathered from parents, teachers, and the child. The American Academy of Pediatrics (AAP) recognizes the importance of accurate diagnosis and management of children with attention-deficit/hyperactivity disorder (ADHD). The AAP developed a practice guideline for the diagnosis of ADHD among children from 6 to 12 years of age who are evaluated by primary care clinicians. The significant components of the diagnostic guideline include 1) the use of explicit criteria for the diagnosis using the Diagnostic and Statistical Manual of Mental Health Disorders, Fourth Edition (DSM-IV) criteria5; 2) the importance of obtaining information about the child's symptoms in more than 1 setting (especially from schools); and 3) the search for coexisting conditions that may make the diagnosis more difficult or complicate treatment planning. This guideline is based on an extensive review of the medical, psychological, and educational literature. The objectives of the literature review were to determine the long- and short-term effectiveness and safety of pharmacological and nonpharmacological interventions for ADHD in children from 6 to 12 years of age, and to compare single treatment methods (e.g., medications alone) with combined management strategies. Two systematic, evidence-based reviews were used 55 extensively in the development of this guideline. In addition, other resources were used to gather more information. Primary care clinicians cannot work alone in the treatment of school-aged children with ADHD. Ongoing communication with parents, teachers, and other schoolbased professionals is necessary to monitor the progress and effectiveness of specific interventions. Parents are key partners in the management plan as sources of information and as the child's primary caregiver. Integration of services with psychologists, child psychiatrists, neurologists, educational specialists, developmental-behavioral pediatricians, and other mental health professionals may be appropriate for children with ADHD who have coexisting conditions and may continue to have problems in functioning despite treatment. Attention to the child's social development in community settings other than school requires clinical knowledge of a variety of activities and services in the community. This information is from the American Academy of Pediatrics website: http://www.aap.org/policy/s0120.html 56 Attachment G Positive Behavior Support Program “PBS is a broad range of systematic and individualized strategies for achieving important social and learning results while preventing problem behavior” (Center on Positive Behavioral Interventions and Support, 2001). PBS is a collaborative project that includes the Delaware Department of Education, the University of Delaware Center for Disabilities Studies, and Delaware's Public Schools. PBS is in its sixth year in Delaware. Currently, there are fifty two schools throughout the State involved in the program. Twenty-five new sites were added this year. The sites include public, schools and alternative programs. When PBS strategies are implemented school-wide, students benefit by having an environment that is conducive to learning. All individuals (students, staff, teachers, parents) learn more about their own behavior, learn to work together, and support each other as a community of learners. The following are some key elements that characterize PBS schools in Delaware. They: Embrace both “systems” and “individualized” perspectives in adopting a broad range of evidenced-based strategies, programs, and supports. Establish a positive and safe school climate that promotes academic, social and emotional development. Place great emphasis on the importance of preventing behavior problems. They are proactive and positive rather than reactive and punitive. Recognize that ALL students can benefit from proactive positive behavioral supports. Adopt a team process for planning, development, implementation, and evaluation. Implement, with demonstrated fidelity, a variety of positive techniques, strategies, programs, and supports at three levels of prevention and intervention: universal (for all students), secondary (target “at-risk” students), and tertiary (targeting students with serious and/or chronic behavior problems). Develop individualized behavioral support plans, linked to functional behavioral assessments, when supporting a student with challenging problem behavior. Recognize that many students with serious and chronic behaviors require coordinated and integrated “wrap around” services. 57 Attachment H Prescription Monitoring Program A Prescription Monitoring Program is an electronic system in which pharmacies, as well as medical providers, enter prescription data into a centralized data bank. According to the Bureau of Justice, the purpose of the Prescription Drug Monitoring Program is to enhance the capacity of regulatory and law enforcement agencies to collect and analyze controlled substance prescription data. The U.S. Department of Justice offers funding to assist states interested in creating a prescription drug monitoring program or improving an already existing program. Currently 22 states have Prescription Monitoring Programs. 58