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Putting Mental Retardation and Mental Illness on Health Care Professionals' Radar Screen

Putting Mental Retardation and Mental Illness on Health Care Professionals' Radar Screen In the last 10 to 20 years, geneticists, neuroscientists, and others have made tantalizing discoveries about some basic features of mental retardation and developmental disabilities. For example, researchers have linked fragile X syndrome with excess or abnormal neuronal connections in the brain. They've found that adults who have velocardiofacial syndrome are very likely also to have psychosis. Another major finding is the difference in behavioral phenotypes in Prader-Willi syndrome (PWS) and Angelman syndrome (AS) because of genetic imprinting. The same region on chromosome 15 is deleted in both disorders, but a deletion inherited from the father results in PWS while a deletion inherited from the mother causes AS. These findings and others are helping to build a foundation for improved diagnoses and medical care for people with mental retardation and developmental disabilities. But perhaps the greatest challenge for researchers and clinicians will be translating these findings into accurate diagnostic methods and appropriate treatment for people with mental retardation who also have mental illnesses. Experts say people with this dual diagnosis are among the most overlooked and ignored patient populations in the United States. "There has been a paucity of psychiatric research and a lack of framework in psychiatry to address emotional, behavioral, and psychiatric problems in these people," says James Harris, MD, director of developmental neuropsychiatry at Johns Hopkins University School of Medicine. "The problems in access to mental health care are far more extensive and widespread than in terms of physical health." Common condition Experts currently estimate that emotional, behavioral, and psychiatric disorders are three to four times more common in people with mental retardation and developmental disabilities than they are in the general public. However, current estimates may overlook people with mild retardation and those with very rare syndromes. Now that research has established some genetic underpinnings for mental retardation, and the people who have these genetic disorders have been actively living and working in their communities for three decades or more, the dual diagnosis of mental retardation and mental illness appears to be gaining acceptance in the medical community. "Most people now believe [coexisting mental retardation and mental illness] can occur, that the impaired behavior is not just because of the mental retardation," says Nancy Cain, MD, director of the Mental Retardation/Developmental Disorders Psychiatric Service at the University of Rochester (NY) Medical Center. "It used to be that people would say, ‘This is just Joe,' even though Joe was hallucinating like mad. They just accepted it. As long as patients weren't aggressive, it was accepted." Even if the recognition factor has increased, the diagnosis of coexisting mental illness frequently is missed or ignored. "There appears to be a reluctance [by clinicians] to make the diagnosis because they don't want to add to the stigma that people with mental retardation already have," notes Bryan King, MD, professor of psychiatry and pediatrics at Dartmouth Medical School. "The other concern we see expressed is that the diagnosis will sentence the individual to a life of heartache. It's a variation on the stigma theme." King says these perspectives echo the days when cancer was a dirty word that physicians didn't want to utter in front of patients. "In terms of the diagnostic process, patients don't have cancer because I say so, they have an illness that has this name. It's the same thing with mental retardation [and mental illness]." The biggest reason that dual diagnoses are overlooked, King says, is because it's so difficult to know if or how the symptoms of mental illness are different in an individual with cognitive impairments. Patients with a dual diagnosis can have a number of different genetic syndromes, and it's arduous work to identify specific symptoms for each one. If there's one conclusion that is coming out of recent research in genetics and neuroscience, it's that people with mental retardation aren't afflicted with just one genetic abnormality, they have several. Communication is key Without laboratory tests to confirm diagnoses of mental illnesses, patients' communication skills become a key diagnostic tool. But cognitive deficits impede or skew communication; some patients don't speak. Despite the communication barriers, some diagnoses are more straightforward than others. "If you have a nonverbal patient with an anxiety disorder, you have to come to the diagnosis by inference," says King. "You can make a solid case for that diagnosis when the person's behavior looks like they are fearful or anxious." Other diagnoses are far more complex. "An individual with significant cognitive impairment may not articulate a delusion the same way as another individual," he adds. "The issue of imaginary friends, which is a normal part of typical development, may become more problematic in someone with a cognitive disability. It may be interpreted as pathological when it's not." Diagnoses that are incorrect, incomplete, or overlooked can lead to inappropriate treatment. Often, says Harris, clinicians aren't trained adequately to know that some mental illnesses occur more commonly in certain cognitive disorders. "Depression is higher in Down syndrome than in other mental retardation syndromes," he says. "Sometimes young people with Down syndrome are diagnosed with Alzheimer disease because the clinician didn't recognize they are depressed." In other cases, assumptions about treatment are made prematurely. "Behavior management techniques sometimes are used with people with mental retardation before a diagnosis is made," adds Harris. "It's assumed the person has behavioral problems, but it might be attention deficit disorder or early schizophrenia." When Mark Fleisher, MD, sees adult patients at the University of Nebraska College of Medicine's Neuro-Developmental Psychiatry Clinic, most have come from a group home setting. If they don't have a friend or family member to accompany them, the patient's medical history often is a mystery. Lack of information compounds the already difficult job of making a diagnosis. "Has the patient been referred by another doctor? No one knows. Has the patient had medications in the past? No one knows. Has this person been hospitalized? No one knows," says Fleisher, who is director of the clinic. Inaccurate or missing diagnoses mean subpar treatment. But experts say treatment is deficient in many cases because psychopharmacology research has not been extended to populations with mental retardation and developmental disabilities. New medications are on the market, but no one really knows if these agents act differently or should be prescribed in different dosages than in the general population. "A new medication that is used a lot [for depression] in the general population is Effexor (venlafaxine), which affects serotonin and norepinephrine. There has been no work at all with that medication in the developmentally disabled population," says Mark Lewis, PhD, professor of psychiatry, neuroscience, and psychology at the University of Florida College of Medicine. "It is surprising how few medications have undergone appropriate, methodologically rigorous evaluations in interventions with the developmentally disabled population." Long-overdue attention In the meantime, advocates for improved research, diagnoses, and treatment for people with mental retardation and developmental disabilities feel that they finally are getting some long-overdue attention from federal health authorities. After the 1999 White House Conference on Mental Health and the first Surgeon General's Report on Mental Health the same year, the needs of people with mental retardation and developmental disabilities were not addressed in any comprehensive way. Late last year, a few days prior to the Surgeon General's Conference on Health Disparities and Mental Retardation held on December 5-6, three constituents of the National Institutes of Health, along with the Joseph P. Kennedy Jr Foundation, convened a workshop that specifically addressed emotional and behavioral health in people with mental retardation and developmental disabilities. The workshop produced a series of recommendations on ways to improve training and research (report available online at http://www.ninds.nih.gov/news_and_events/Emotional_Behavioral_Health_2001.htm?format=printable). In his report from the health disparities and mental retardation conference, former Surgeon General David Satcher, MD, PhD, endorsed the implementation of recommendations from the workshop. "It took a lot of effort to get the surgeon general and three of the NIHs to do this," says Harris, who was chair of the workshop's organizing committee. "But unless you bring this to the public's attention, nothing will happen. In terms of health care, those who lose out will be those who take the most time" in developing strategies and carrying them out. Box Section Ref ID Operation HouseCall Teaches New Attitudes At Boston University School of Medicine, when parents of mentally retarded and developmentally disabled children complained that the medical professional treated them poorly, a pair of physicians listened. "The parents were angry and frustrated," says Benjamin Siegel, MD, director of medical student education in pediatrics. "They felt that physicians didn't really understand what developmental delay is all about, or how to give parents bad news and talk about their child's condition." Siegel and a neurologist colleague, David Coulter, MD, discussed the matter. Coulter was on the board of the Greater Boston Arc, a local chapter of a national organization that deals with mental retardation, and had heard the parents' complaints firsthand. Coulter and Siegel talked with the parents, and tried to devise a way to let them tell medical students how they would like to be treated. Their talks gave rise to Operation HouseCall, now a mandatory program for third-year medical students in their pediatric rotation. The program covers a number of issues that parents have said are important—their relationships with health care professionals, locating resources for their children in their communities, and the effect their child's disability has on other members of the family. "The parents are very open, articulate, and they are not here to bash the medical students," says Siegel. After an orientation lecture by one of the parents participating in the program, students are "assigned" to one of about 20 families that has a child with mental retardation or a developmental disability. The students contact the families and make plans to spend an evening with them. Does the program really change attitudes? A survey of 115 students who participated showed that 70% felt that Operation HouseCall enhanced their educational experience (Ambulatory Child Health. 1998;4:307-316). In the 13 years that the program has been in existence, nearly 2000 students have participated. "Developmental disability is a very important part of pediatrics," says Siegel, "and for the most part it is not taught very well."—R.V. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JAMA American Medical Association

Putting Mental Retardation and Mental Illness on Health Care Professionals' Radar Screen

JAMA , Volume 288 (4) – Jul 24, 2002

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Publisher
American Medical Association
Copyright
Copyright © 2002 American Medical Association. All Rights Reserved.
ISSN
0098-7484
eISSN
1538-3598
DOI
10.1001/jama.288.4.433
Publisher site
See Article on Publisher Site

Abstract

In the last 10 to 20 years, geneticists, neuroscientists, and others have made tantalizing discoveries about some basic features of mental retardation and developmental disabilities. For example, researchers have linked fragile X syndrome with excess or abnormal neuronal connections in the brain. They've found that adults who have velocardiofacial syndrome are very likely also to have psychosis. Another major finding is the difference in behavioral phenotypes in Prader-Willi syndrome (PWS) and Angelman syndrome (AS) because of genetic imprinting. The same region on chromosome 15 is deleted in both disorders, but a deletion inherited from the father results in PWS while a deletion inherited from the mother causes AS. These findings and others are helping to build a foundation for improved diagnoses and medical care for people with mental retardation and developmental disabilities. But perhaps the greatest challenge for researchers and clinicians will be translating these findings into accurate diagnostic methods and appropriate treatment for people with mental retardation who also have mental illnesses. Experts say people with this dual diagnosis are among the most overlooked and ignored patient populations in the United States. "There has been a paucity of psychiatric research and a lack of framework in psychiatry to address emotional, behavioral, and psychiatric problems in these people," says James Harris, MD, director of developmental neuropsychiatry at Johns Hopkins University School of Medicine. "The problems in access to mental health care are far more extensive and widespread than in terms of physical health." Common condition Experts currently estimate that emotional, behavioral, and psychiatric disorders are three to four times more common in people with mental retardation and developmental disabilities than they are in the general public. However, current estimates may overlook people with mild retardation and those with very rare syndromes. Now that research has established some genetic underpinnings for mental retardation, and the people who have these genetic disorders have been actively living and working in their communities for three decades or more, the dual diagnosis of mental retardation and mental illness appears to be gaining acceptance in the medical community. "Most people now believe [coexisting mental retardation and mental illness] can occur, that the impaired behavior is not just because of the mental retardation," says Nancy Cain, MD, director of the Mental Retardation/Developmental Disorders Psychiatric Service at the University of Rochester (NY) Medical Center. "It used to be that people would say, ‘This is just Joe,' even though Joe was hallucinating like mad. They just accepted it. As long as patients weren't aggressive, it was accepted." Even if the recognition factor has increased, the diagnosis of coexisting mental illness frequently is missed or ignored. "There appears to be a reluctance [by clinicians] to make the diagnosis because they don't want to add to the stigma that people with mental retardation already have," notes Bryan King, MD, professor of psychiatry and pediatrics at Dartmouth Medical School. "The other concern we see expressed is that the diagnosis will sentence the individual to a life of heartache. It's a variation on the stigma theme." King says these perspectives echo the days when cancer was a dirty word that physicians didn't want to utter in front of patients. "In terms of the diagnostic process, patients don't have cancer because I say so, they have an illness that has this name. It's the same thing with mental retardation [and mental illness]." The biggest reason that dual diagnoses are overlooked, King says, is because it's so difficult to know if or how the symptoms of mental illness are different in an individual with cognitive impairments. Patients with a dual diagnosis can have a number of different genetic syndromes, and it's arduous work to identify specific symptoms for each one. If there's one conclusion that is coming out of recent research in genetics and neuroscience, it's that people with mental retardation aren't afflicted with just one genetic abnormality, they have several. Communication is key Without laboratory tests to confirm diagnoses of mental illnesses, patients' communication skills become a key diagnostic tool. But cognitive deficits impede or skew communication; some patients don't speak. Despite the communication barriers, some diagnoses are more straightforward than others. "If you have a nonverbal patient with an anxiety disorder, you have to come to the diagnosis by inference," says King. "You can make a solid case for that diagnosis when the person's behavior looks like they are fearful or anxious." Other diagnoses are far more complex. "An individual with significant cognitive impairment may not articulate a delusion the same way as another individual," he adds. "The issue of imaginary friends, which is a normal part of typical development, may become more problematic in someone with a cognitive disability. It may be interpreted as pathological when it's not." Diagnoses that are incorrect, incomplete, or overlooked can lead to inappropriate treatment. Often, says Harris, clinicians aren't trained adequately to know that some mental illnesses occur more commonly in certain cognitive disorders. "Depression is higher in Down syndrome than in other mental retardation syndromes," he says. "Sometimes young people with Down syndrome are diagnosed with Alzheimer disease because the clinician didn't recognize they are depressed." In other cases, assumptions about treatment are made prematurely. "Behavior management techniques sometimes are used with people with mental retardation before a diagnosis is made," adds Harris. "It's assumed the person has behavioral problems, but it might be attention deficit disorder or early schizophrenia." When Mark Fleisher, MD, sees adult patients at the University of Nebraska College of Medicine's Neuro-Developmental Psychiatry Clinic, most have come from a group home setting. If they don't have a friend or family member to accompany them, the patient's medical history often is a mystery. Lack of information compounds the already difficult job of making a diagnosis. "Has the patient been referred by another doctor? No one knows. Has the patient had medications in the past? No one knows. Has this person been hospitalized? No one knows," says Fleisher, who is director of the clinic. Inaccurate or missing diagnoses mean subpar treatment. But experts say treatment is deficient in many cases because psychopharmacology research has not been extended to populations with mental retardation and developmental disabilities. New medications are on the market, but no one really knows if these agents act differently or should be prescribed in different dosages than in the general population. "A new medication that is used a lot [for depression] in the general population is Effexor (venlafaxine), which affects serotonin and norepinephrine. There has been no work at all with that medication in the developmentally disabled population," says Mark Lewis, PhD, professor of psychiatry, neuroscience, and psychology at the University of Florida College of Medicine. "It is surprising how few medications have undergone appropriate, methodologically rigorous evaluations in interventions with the developmentally disabled population." Long-overdue attention In the meantime, advocates for improved research, diagnoses, and treatment for people with mental retardation and developmental disabilities feel that they finally are getting some long-overdue attention from federal health authorities. After the 1999 White House Conference on Mental Health and the first Surgeon General's Report on Mental Health the same year, the needs of people with mental retardation and developmental disabilities were not addressed in any comprehensive way. Late last year, a few days prior to the Surgeon General's Conference on Health Disparities and Mental Retardation held on December 5-6, three constituents of the National Institutes of Health, along with the Joseph P. Kennedy Jr Foundation, convened a workshop that specifically addressed emotional and behavioral health in people with mental retardation and developmental disabilities. The workshop produced a series of recommendations on ways to improve training and research (report available online at http://www.ninds.nih.gov/news_and_events/Emotional_Behavioral_Health_2001.htm?format=printable). In his report from the health disparities and mental retardation conference, former Surgeon General David Satcher, MD, PhD, endorsed the implementation of recommendations from the workshop. "It took a lot of effort to get the surgeon general and three of the NIHs to do this," says Harris, who was chair of the workshop's organizing committee. "But unless you bring this to the public's attention, nothing will happen. In terms of health care, those who lose out will be those who take the most time" in developing strategies and carrying them out. Box Section Ref ID Operation HouseCall Teaches New Attitudes At Boston University School of Medicine, when parents of mentally retarded and developmentally disabled children complained that the medical professional treated them poorly, a pair of physicians listened. "The parents were angry and frustrated," says Benjamin Siegel, MD, director of medical student education in pediatrics. "They felt that physicians didn't really understand what developmental delay is all about, or how to give parents bad news and talk about their child's condition." Siegel and a neurologist colleague, David Coulter, MD, discussed the matter. Coulter was on the board of the Greater Boston Arc, a local chapter of a national organization that deals with mental retardation, and had heard the parents' complaints firsthand. Coulter and Siegel talked with the parents, and tried to devise a way to let them tell medical students how they would like to be treated. Their talks gave rise to Operation HouseCall, now a mandatory program for third-year medical students in their pediatric rotation. The program covers a number of issues that parents have said are important—their relationships with health care professionals, locating resources for their children in their communities, and the effect their child's disability has on other members of the family. "The parents are very open, articulate, and they are not here to bash the medical students," says Siegel. After an orientation lecture by one of the parents participating in the program, students are "assigned" to one of about 20 families that has a child with mental retardation or a developmental disability. The students contact the families and make plans to spend an evening with them. Does the program really change attitudes? A survey of 115 students who participated showed that 70% felt that Operation HouseCall enhanced their educational experience (Ambulatory Child Health. 1998;4:307-316). In the 13 years that the program has been in existence, nearly 2000 students have participated. "Developmental disability is a very important part of pediatrics," says Siegel, "and for the most part it is not taught very well."—R.V.

Journal

JAMAAmerican Medical Association

Published: Jul 24, 2002

Keywords: health personnel,mental disorders,intellectual disability,radar

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