A Standard Set of Outcome Measures for the Comprehensive Appraisal of Cleft Care

2017 ◽  
Vol 54 (5) ◽  
pp. 540-554 ◽  
Author(s):  
Alexander C. Allori ◽  
Thomas Kelley ◽  
John G. Meara ◽  
Asteria Albert ◽  
Krishnamurthy Bonanthaya ◽  
...  

Care of the patient with cleft lip and/or palate remains complex. Prior attempts at aggregating data to study the effectiveness of specific interventions or overall treatment protocols have been hindered by a lack of data standards. There exists a critical need to better define the outcomes- particularly those that matter most to patients and their families-and to standardize the methods by which these outcomes will be measured. This report summarizes the recommendations of an international, multidisciplinary working group with regard to which outcomes a typical cleft team could track, how those outcomes could be measured and recorded, and what strategies may be employed to sustainably implement a system for prospective data collection. It is only by agreeing on a common, standard set of outcome measures for the comprehensive appraisal of cleft care that intercenter comparisons can become possible. This is important for quality-improvement endeavors, comparative effectiveness research, and value-based health-care reform.

2012 ◽  
Vol 8 (3S) ◽  
pp. 22s-27s ◽  
Author(s):  
Anthony Wang ◽  
Ronald J. Halbert ◽  
Tiffany Baerwaldt ◽  
Robert J. Nordyke

To improve formulary design processes and support payers in providing more effective health care, policy makers should consider involving commercial payers in the development of comparative effectiveness research and creation of research and treatment guidelines.


2012 ◽  
Vol 30 (34) ◽  
pp. 4194-4201 ◽  
Author(s):  
Olwen M. Hahn ◽  
Richard L. Schilsky

Comparative effectiveness research (CER) has been promoted as a way to improve the translation gap between clinical research and everyday clinical practice as well as to deliver more cost-effective health care. CER will account for a significant portion of funding allocated by the US government for health care research. Oncology has a rich history of improving clinical outcomes and advancing research through randomized controlled trials (RCTs). In this article, we review the role of RCTs in achieving the goals of CER, with particular emphasis on the role of publicly funded clinical trials.


2012 ◽  
Vol 33 (1) ◽  
pp. E6 ◽  
Author(s):  
Edie E. Zusman

Comparative effectiveness research (CER) is the basis for some of the fiercest rhetoric of the current political era. While it is a relatively old and previously academic pursuit, CER may well become the foundation upon which the future of health care in the US is based. The actual impact of CER on—and uptake among—doctors, patients, hospitals, and health insurers, however, remains to be seen. Political considerations and compromises have led to the removal of key aspects of CER implementation from policy legislation to prevent alienating stakeholders critical to the success of health care reform. Health care providers, including specialists such as neurosurgeons, will need to understand both the policies and political implications of CER as its practices becomes an indelible part of the future health care landscape.


2018 ◽  
Vol 55 (10) ◽  
pp. 1382-1390 ◽  
Author(s):  
Peter G. Bittar ◽  
Anna R. Carlson ◽  
Ann Mabie-DeRuyter ◽  
Jeffrey R. Marcus ◽  
Alexander C. Allori

Objective: Our objective is to describe the process of adapting a conceptual framework into a practical toolkit for one cleft team. Design: This is a single-arm implementation study in a single institution. Setting: Implementation took place at a mid-sized multidisciplinary clinic for patients with cleft lip and/or palate (CL/P) from urban/suburban and rural areas across North Carolina and neighboring states. Participants: Eligible participants were patients with CL/P from English-speaking families. Sixty patients entered and finished the study. Interventions: The implementation of a prospective data collection system based on the International Consortium for Health Outcomes Measurement (ICHOM) standard set of outcome measures for CL/P was accomplished in multiple stages. Patient- and clinician-reported forms and protocols for gathering data were created. Team members were trained and the system was tested; finally, the system was deployed. Main outcome measures: Success was appraised using the RE-AIM framework to assess reach, effectiveness, adoption, implementation, and maintenance. Results: Ninety-eight percent of patients and all team members agreed to participate. Ninety-four percent of required data were captured. Adaptations to friction points were made; specifically, visible reminders were affixed to charts, primary clinicians were required to assume data entry responsibility, and e-mail reminders were instituted. Development cost was US$7707; average time cost per clinician was 21 min/wk. Conclusions: Conceptual frameworks for outcomes studies must be tailored to their environments; otherwise, they cannot be practically implemented and sustained. We present this process for a cleft team using the ICHOM standard set. The process may help other teams implement the standard set or other conceptual frameworks.


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