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Cerebral Palsy Research White Paper Developmental Disabilities Issues Exploration Forum: Cerebral Palsy Research White Paper_____________________________ Developmental Disabilities Issues Exploration Forum: Cerebral Palsy 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 Prepared by: Vanderbilt Evidence-based Practice Center Nashville, TN Contract No. 290-2007-10065-I Authors: Dwayne Dove, M.D., Ph.D. Tyler Reimschisel, M.D. Melissa McPheeters, Ph.D., M.P.H. Katie Jackson, B.A. Allison Glasser, B.A. Pamela Curtis, M.S. Cathy Gordon, M.P.H. Susan Stearns, M.A., M.B.A. Kay Mattson, M.P.H., M.S.W. Beth Church AHRQ Publication No. 11(12)-EHC078-EF October 2011 This report is based on research conducted by the Vanderbilt Evidence-based Practice Center (EPC) 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 authors, 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 clinicians, employers, policymakers, and others make informed decisions about the provision of health care services. This report is intended as a reference and not as a substitute for the application of clinical judgment. 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 special permission. Citation of the source is appreciated. Persons using assistive technology may not be able to fully access information in this report. For assistance contact [email protected] None of the investigators have any affiliations or financial involvement that conflicts with the material presented in this report. Suggested citation: Dove D, Reimschisel T, McPheeters M, Jackson K, Glasser A, Curtis P, Gordon C, Stearns S, Mattson K, Church B. Developmental Disabilities Issues Exploration Forum: Cerebral Palsy. Research White Paper. (Prepared by the Vanderbilt Evidence-based Practice Center under Contract No. 290-2007-10065-I.) AHRQ Publication No. 11(12)-EHC078- EF. Rockville, MD: Agency for Healthcare Research and Quality, October 2011. Available at www.effectivehealthcare.ahrq.gov/reports/final.cfm. ii Preface The Agency for Healthcare Research and Quality (AHRQ), through its Evidence-based Practice Centers (EPCs), sponsors the development of evidence reports and technology assessments to assist public- and private-sector organizations in their efforts to improve the quality of health care in the United States. The reports and assessments provide organizations with comprehensive, science-based information on common, costly medical conditions and new health care technologies. The EPCs systematically review the relevant scientific literature on topics assigned to them by AHRQ and conduct additional analyses when appropriate prior to developing their reports and assessments. To improve the scientific rigor of these evidence reports, AHRQ supports empiric research by the EPCs to help understand or improve complex methodologic issues in systematic reviews. These methods research projects are intended to contribute to the research base and be used to improve the science of systematic reviews. They are not intended to be guidance to the EPC program, although may be considered by EPCs along with other scientific research when determining EPC program methods guidance. AHRQ expects that the EPC evidence reports and technology assessments will inform individual health plans, providers, and purchasers; as well as the health care system as a whole by providing important information to help improve health care quality. The reports undergo peer review prior to their release as a final report. We welcome comments on this Methods Research Project. 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 e-mail 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 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 Developmental Disabilities Issues Exploration Forum: Cerebral Palsy Structured Abstract Background/Purpose. The Effective Health Care Program undertook a stakeholder engagement forum to determine and prioritize topics for comparative effectiveness reviews related to the priority condition “developmental delays,” of which cerebral palsy (CP) was chosen as a developmental delay in need of such an analysis. Literature Search. A literature search for guidelines, consensus statements, systematic reviews, and meta-analyses uncovered 104 articles related to CP treatment and management. Examination of the articles revealed a limited secondary literature in most aspects of the care of patients with CP. Meeting Materials. Forty-one stakeholders were contacted to participate in two teleconferences and one in-person meeting. The stakeholders represented patients, families, advocates, clinicians, policymakers, public and private payers, Federal agencies, researchers, and methodologists. Stakeholders used the literature results as well as their own backgrounds and knowledge to develop an initial 88 potential topics for comparative effectiveness research which were subsequently prioritized into 24 topic areas for future research. Meeting Results. Stakeholders identified future research needs for comparative effectiveness reviews, primary research, as well as suggestions for research translation, dissemination, and general concepts. Proposed topics for comparative effectiveness reviews of treatments for patients with CP included screening for secondary and related conditions, rehabilitation treatments following surgical interventions, surgical interventions versus nonsurgical interventions for spasticity, surgical interventions for spasticity in particular subgroups of patients, feeding and nutritional interventions, and speech and language interventions. Conclusions. The Issues Exploration Forum for CP successfully brought together stakeholders from disparate disciplines to formulate comparative effectiveness review questions for further research. The stakeholders expressed the need for primary research, improved translation, dissemination, and methodological standardization of research in addition to reviews. iv Contents Background ......................................................................................................................................1 Cerebral Palsy ...........................................................................................................................1 Comparative Effectiveness Research and the Evidence-based Practice Centers .....................1 Methods............................................................................................................................................3 Identification of Evidence Gaps and Development of Research Questions .............................3 Stakeholder Engagement ..........................................................................................................3 Recruitment and Preparation.............................................................................................3 Stakeholder Committee: Review and Prioritization of Research Questions ....................5 Priority Setting Process .....................................................................................................6 Results ..............................................................................................................................................7 Literature Scan .........................................................................................................................7 Practice Guidelines and Consensus Statements .......................................................................7 Systematic Reviews ..................................................................................................................7 Meetings ...................................................................................................................................8 Stakeholder Discussion One .............................................................................................8 Stakeholder Discussion Two.............................................................................................8 In-Person Meeting .............................................................................................................9 Discussion ......................................................................................................................................11
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