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Interventions for Adolescents and Young Adults With Autism Spectrum Disorders PDF

374 Pages·2012·2.93 MB·English
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Comparative Effectiveness Review Number 65 Interventions for Adolescents and Young Adults With Autism Spectrum Disorders Comparative Effectiveness Review Number 65 Interventions for Adolescents and Young Adults With Autism Spectrum Disorders Prepared for: Agency for Healthcare Research and Quality U.S. Department of Health and Human Services 540 Gaither Road Rockville, MD 20850 www.ahrq.gov Contract No. 290-2007-10065-I Prepared by: Vanderbilt Evidence-based Practice Center Nashville, TN Investigators: Julie Lounds Taylor, Ph.D. Dwayne Dove, M.D. Jeremy Veenstra-VanderWeele, M.D. Nila A. Sathe, M.A., M.L.I.S. Melissa L. McPheeters, Ph.D., M.P.H. Rebecca N. Jerome, M.L.I.S., M.P.H. Zachary Warren, Ph.D. AHRQ Publication No. 12-EHC063-EF August 2012 This report is based on research conducted by the Vanderbilt Evidence-based Practice Center under contract to the Agency for Healthcare Research and Quality (AHRQ), Rockville, MD (Contract No. 290-2007-10065-I). The findings and conclusions in this document are those of the author(s), who are responsible for its content, and do not necessarily represent the views of AHRQ. No statement in this report should be construed as an official position of AHRQ or of the U.S. Department of Health and Human Services. The information in this report is intended to help health care decisionmakers—patients and clinicians, health system leaders, and policymakers, among others—make well-informed decisions and thereby improve the quality of health care services. This report is not intended to be a substitute for the application of clinical judgment. Anyone who makes decisions concerning the provision of clinical care should consider this report in the same way as any medical reference and in conjunction with all other pertinent information, i.e., in the context of available resources and circumstances presented by individual patients. This report may be used, in whole or in part, as the basis for the development of clinical practice guidelines and other quality enhancement tools, or as a basis for reimbursement and coverage policies. AHRQ or U.S. Department of Health and Human Services endorsement of such derivative products or actions may not be stated or implied. This document is in the public domain and may be used and reprinted without permission except those copyrighted materials that are clearly noted in the document. Further reproduction of those copyrighted materials is prohibited without the specific permission of copyright holders. Persons using assistive technology may not be able to fully access information in this report. For assistance contact [email protected]. None of the investigators has any affiliations or financial involvement that conflicts with the material presented in this report. Suggested citation: Lounds Taylor J, Dove D, Veenstra-VanderWeele J, Sathe NA, McPheeters ML, Jerome RN, Warren Z. Interventions for Adolescents and Young Adults With Autism Spectrum Disorders. Comparative Effectiveness Review No. 65. (Prepared by the Vanderbilt Evidence-based Practice Center under Contract No. 290-2007-10065-I.) AHRQ Publication No. 12-EHC063-EF. Rockville, MD: Agency for Healthcare Research and Quality. August 2012. www.effectivehealthcare.ahrq.gov/reports/final.cfm. ii Preface The Agency for Healthcare Research and Quality (AHRQ) conducts the Effective Health Care Program as part of its mission to organize knowledge and make it available to inform decisions about health care. As part of the Medicare Prescription Drug, Improvement, and Modernization Act of 2003, Congress directed AHRQ to conduct and support research on the comparative outcomes, clinical effectiveness, and appropriateness of pharmaceuticals, devices and health care services to meet the needs of Medicare, Medicaid, and the Children’s Health Insurance Program (CHIP). AHRQ has an established network of Evidence-based Practice Centers (EPCs) that produce Evidence Reports/Technology Assessments to assist public- and private-sector organizations in their efforts to improve the quality of health care. The EPCs now lend their expertise to the Effective Health Care Program by conducting comparative effectiveness reviews (CERs) of medications, devices, and other relevant interventions, including strategies for how these items and services can best be organized, managed, and delivered. Systematic reviews are the building blocks underlying evidence-based practice; they focus attention on the strength and limits of evidence from research studies about the effectiveness and safety of a clinical intervention. In the context of developing recommendations for practice, systematic reviews are useful because they define the strengths and limits of the evidence, clarifying whether assertions about the value of the intervention are based on strong evidence from clinical studies. For more information about systematic reviews, see www.effectivehealthcare.ahrq.gov/reference/purpose.cfm AHRQ expects that CERs will be helpful to health plans, providers, purchasers, government programs, and the health care system as a whole. In addition, AHRQ is committed to presenting information in different formats so that consumers who make decisions about their own and their family’s health can benefit from the evidence. Transparency and stakeholder input from are essential to the Effective Health Care Program. Please visit the Web site (www.effectivehealthcare.ahrq.gov) to see draft research questions and reports or to join an email list to learn about new program products and opportunities for input. Comparative Effectiveness Reviews will be updated regularly. We welcome comments on this CER. They may be sent by mail to the Task Order Officer named below at: Agency for Healthcare Research and Quality, 540 Gaither Road, Rockville, MD 20850, or by email to [email protected]. Carolyn M. Clancy, M.D. Jean Slutsky, P.A., M.S.P.H. Director Director, Center for Outcomes and Evidence Agency for Healthcare Research and Quality Agency for Healthcare Research and Quality Stephanie Chang, M.D., M.P.H. Shilpa Amin, M.D., MBsc, FAAFP Director Task Order Officer Evidence-based Practice Program Center for Outcomes and Evidence Center for Outcomes and Evidence Agency for Healthcare Research and Quality Agency for Healthcare Research and Quality iii Acknowledgments The authors gratefully acknowledge the following individuals for their contributions to this project: Dr. Adeola Davis assisted with reviewing abstracts and full-text articles and data extraction. We appreciate her willingness to take on whatever was asked of her. Dr. Shanthi Krishnaswami lent her keen eye for detail to data extraction and reviews of abstracts and full text articles. We also appreciate her thoughtful input into methodological discussions. Ms. Kathy Lee provided helpful assistance in locating articles and preparing materials for meetings. Ms. Sanura Latham and Ms. Leah Vance assisted with formatting tables and appendices and lent their support to logistical elements of the review. Key Informants Somer L. Bishop, Ph.D. Marcia Mailick Seltzer, Ph.D. Cincinnati Children’s Hospital Waisman Center Cincinnati, OH Madison, WI Edwin H. Cook, Jr., M.D. Fred R. Volkmar, M.D. University of Illinois, Chicago Yale Child Study Center Chicago, IL New Haven, CT Jim Perrin, M.D. Massachusetts General Hospital Boston, MA Technical Expert Panel Somer L. Bishop, Ph.D. Patricia Howlin, Ph.D. Cincinnati Children’s Hospital Institute of Psychiatry Cincinnati, OH London, United Kingdom Daniel Coury, M.D. Jim Perrin, M.D. Ohio State University Massachusetts General Hospital Columbus, OH Boston, MA Edwin H. Cook, Jr., M.D. Peter Szatmari, M.D., M.Sc. University of Illinois, Chicago McMaster University Chicago, IL Hamilton, Ontario, Canada iv Peer Reviewers Somer L. Bishop, Ph.D. Jim Perrin, M.D. Cincinnati Children’s Hospital Massachusetts General Hospital Cincinnati, OH Boston, MA Edwin H. Cook, Jr., M.D. Lawrence Scahill, Ph.D. University of Illinois, Chicago Yale University Chicago, IL New Haven, CT Patricia Howlin, Ph.D. Tristram Smith, Ph.D. Institute of Psychiatry University of Rochester London, United Kingdom Rochester, NY Doris Lotz, M.D. Peter Szatmari, M.D., M.Sc. New Hampshire Department of Health and McMaster University Human Services Hamilton, Ontario, Canada Concord, NH Gary Mesibov, Ph.D. University of North Carolina Chapel Hill, NC v Interventions for Adolescents and Young Adults With Autism Spectrum Disorders Structured Abstract Objectives. We systematically reviewed evidence on therapies for adolescents and young adults (ages 13 to 30) with autism spectrum disorders (ASD). We focused on the outcomes, including harms and adverse effects, of interventions addressing the core symptoms of ASD; common medical and mental health comorbidities occurring with ASD; the attainment of goals toward functional/adult independence; educational and occupational/vocational attainment; quality of life; access to health and other services; and the transitioning process (i.e., process of transitioning to greater independent functioning). We also addressed the effects of interventions on family outcomes including parent distress and satisfaction with interventions. Data sources. We searched MEDLINE® via PubMed, PsycINFO®, the Educational Resources Information Clearinghouse, and the Cumulative Index of Nursing and Allied Health Literature databases as well as the reference lists of included studies. Review Methods. We included studies published in English from January 1980 to December 2011. We excluded intervention studies with fewer than 20 adolescents or young adults with ASD or fewer than 20 parents or family members of such individuals and studies lacking relevance to ASD treatment. Results. We identified 32 unique studies, most of which were poor quality. Five studies, mostly of medical interventions, were fair quality, and none were good. In the behavioral literature, studies of group- and computer-based interventions reported short-term gains in social skills. Two poor-quality studies of educational interventions reported some gains in vocabulary and reading. Four small studies investigated disparate interventions addressing highly specific adaptive/life skills with some positive results in studies typically of short duration. Studies of vocational interventions, all of poor quality, reported that on-the job supports may promote employment in the community. Little evidence supports the use of medical interventions in adolescents and young adults with ASD; however, antipsychotic medications and serotonin reuptake inhibitors were associated with improvements in specific challenging behaviors. Similarly, little evidence supports the use of allied health interventions including facilitated communication. Conclusions. Few studies have been conducted to assess treatment approaches for adolescents and young adults with ASD, and as such there is very little evidence available for specific treatment approaches in this population; this is especially the case for evidence-based approaches to support the transition of youth with autism to adulthood. Of the small number of studies available, most were of poor quality, which may reflect the relative recency of the field. Five studies, primarily of medical interventions, had fair quality. Behavioral, educational, and adaptive/life skills studies were typically small and short term and suggested some potential improvements in social skills and functional behavior. Small studies suggested that vocational programs may increase employment success for some individuals. Few data are available to support the use of medical or allied health interventions in the adolescent and young adult vi population. The medical studies that have been conducted focused on the use of medications to address specific challenging behaviors, including irritability and aggression, for which effectiveness in this age group is largely unknown and inferred from studies including mostly younger children. vii Contents Executive Summary .................................................................................................................ES-1 Introduction ....................................................................................................................................1 Need for Evidence Regading Treatment of Autism Spectrum Disorders in Adolescents and Young Adults ................................................................................................................1 Interventions Used To Treat ASD .............................................................................................2 Behavioral Interventions ......................................................................................................2 Educational Interventions ....................................................................................................3 Vocational Interventions ......................................................................................................3 Adaptive/Life Skills Interventions .......................................................................................3 Medical and Related Interventions ......................................................................................4 Allied Health Interventions ..................................................................................................4 Importance of this Review .........................................................................................................5 Scope and Key Questions ..........................................................................................................5 Scope of This Report ...........................................................................................................5 Key Questions ......................................................................................................................5 Organization of This Evidence Report ......................................................................................6 Uses of This Report ...................................................................................................................6 Methods ...........................................................................................................................................8 Topic Development and Refinement .........................................................................................8 Role of the AHRQ Task Order Officer ................................................................................8 Analytic Framework ..................................................................................................................8 Literature Search Strategy........................................................................................................10 Databases ...........................................................................................................................10 Regulatory Information ......................................................................................................10 Search Terms .....................................................................................................................10 Process for Study Selection .....................................................................................................11 Inclusion and Exclusion Criteria ........................................................................................11 Screening of Studies ................................................................................................................13 Categorization of Interventions................................................................................................13 Data Extraction and Data Management ...................................................................................14 Individual Study Quality Assessment ......................................................................................14 Determining Quality Levels ...............................................................................................15 Data Synthesis ..........................................................................................................................15 Grading the Body of Evidence for Each Key Question ...........................................................15 Applicability ............................................................................................................................17 Peer Review and Public Commentary .....................................................................................17 Results ...........................................................................................................................................18 Article Selection.......................................................................................................................18 Organization of Results............................................................................................................19 Overview of the Literature .......................................................................................................19 Studies of Behavioral Interventions .........................................................................................20 Key Points ..........................................................................................................................20 Overview of the Literature .................................................................................................21 Detailed Analysis ...............................................................................................................21 Studies of Educational Interventions .......................................................................................26 viii Key Points ..........................................................................................................................26 Overview of the Literature .................................................................................................26 Detailed Analysis ...............................................................................................................26 Studies of Adaptive/Life Skills Interventions ..........................................................................28 Key Points ..........................................................................................................................28 Overview of the Literature .................................................................................................28 Detailed Analysis ...............................................................................................................29 Studies of Vocational Interventions .........................................................................................32 Key Points ..........................................................................................................................32 Overview of the Literature .................................................................................................32 Detailed Analysis ...............................................................................................................32 Studies of Medical Interventions .............................................................................................37 Key Points ..........................................................................................................................37 Overview of the Literature .................................................................................................37 Detailed Analysis ...............................................................................................................38 Studies of Allied Health Interventions .....................................................................................49 Key Points ..........................................................................................................................49 Overview of the Literature .................................................................................................49 Detailed Analysis ...............................................................................................................49 Discussion......................................................................................................................................54 State of the Literature...............................................................................................................54 Summary of Outcomes ............................................................................................................54 Studies of Behavioral Interventions ...................................................................................54 Studies of Educational Interventions .................................................................................54 Studies of Adaptive/Life Skills Interventions ....................................................................55 Studies of Vocational Interventions ...................................................................................55 Studies of Medical Interventions .......................................................................................55 Studies of Allied Health Interventions ...............................................................................57 Strength of the Evidence for Effectiveness of Therapies .........................................................57 Overview ............................................................................................................................57 Applicability ............................................................................................................................61 Applicability of the Evidence ............................................................................................61 Gaps in the Evidence ...............................................................................................................64 Methodologic Considerations ............................................................................................64 Future Research .................................................................................................................65 Conclusions ..............................................................................................................................67 References .....................................................................................................................................68 Acronyms and Abbreviations .....................................................................................................73 Tables Table A. Description of Study Quality Levels...........................................................................ES-6 Table B. Summary of Strength of Evidence and Key Outcomes of Studies ...........................ES-11 Table 1. Inclusion and Exclusion Criteria ......................................................................................11 Table 2. Description of Study Quality Levels ...............................................................................15 Table 3. Domains Used To Assess Strength of Evidence ..............................................................16 ix

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Lawrence Scahill, Ph.D. Yale University. New Haven, CT. Tristram Smith, Ph.D. University of Rochester. Rochester, NY. Peter Szatmari, M.D., M.Sc.
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