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.
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.
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.
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.
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.