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The Center of Excellence for Pediatric Quality Measurement (CEPQM) at Boston Children's Hospital worked with pediatric disability experts from across the country to develop the Children with Disabilities Algorithm (CWDA). We developed CWDA through a rigorous code classification process involving experts and triangulated CWDA’s classification of children with disabilities (CWD) with parent perspective and physician chart abstraction.

Disability Concepts and Definitions

We based all aspects of CWDA development on the disability concepts and definitions detailed by the World Health Organization’s International Classification of Functioning, Disability, and Health (ICF) and the United Nations Convention on the Rights of Persons with Disabilities.

Code Classification Process

We implemented a four-step code classification process to identify a list of ICD-9 codes indicative of CWD. Each of the 14,567 codes within the 2012 ICD-9 codebook was independently reviewed by multiple pediatricians and relevant subspecialists in order to classify the codes based on their likelihood of indicating CWD. A total of eight fellowship-trained general pediatricians with expertise in CWD and 42 subspecialists from across the United States participated in the code classification process; 669 codes were identified as having a ≥75 percent likelihood of indicating CWD and were ultimately included in CWDA.

Triangulation

We triangulated CWDA’s identification of CWD against parent perspective and physician assessment of patient charts. We included both parent and physician assessments because they offer complementary viewpoints — parents have more intimate knowledge of their own children in non-clinical settings than physicians do, and physicians are exposed to greater volumes of children and thus able to make comparative assessments of children’s functional ability.

Parent Survey

We conducted a parent survey to compare CWDA’s determination of child disability status to the parent perspective. We assembled our parent survey questions from three previously used parent-report instruments that have been used to form the basis for establishing CWD prevalence in prior national surveys. The survey asked parents to reflect on their child’s functional ability in several domains (e.g., seeing, hearing, walking, learning) over the prior year and ended with the question “Do you consider your child to have a disability?”

Physician Chart Abstraction

We conducted a chart abstraction to compare CWDA’s determination of child disability status to the physician assessment of patient charts. We developed a novel chart abstraction tool that required physicians to abstract data pertaining to several domains of potential impairments and provide a clinical summary for the year’s encounters and ended with the question “Do you consider this child to have at least one disability for the full duration of the target abstraction period?”