Background: Quantifying the burden of multimorbidity for healthcare research using administrative data has been constrained. Existing measures incompletely capture chronic conditions of relevance and are narrowly focused on risk-adjustment for mortality, healthcare cost or utilization. Moreover, the measures have not undergone a rigorous review for how accurately the components, specifically the International Classification of Diseases, Ninth Revision (ICD-9) codes, represent the chronic conditions that comprise the measures. We performed a comprehensive, structured literature review of research studies on the accuracy of ICD-9 codes validated using external sources across an inventory of 81 chronic conditions. The conditions as a weighted measure set have previously been demonstrated to impact not only mortality but also physical and mental health-related quality of life.

Methods: For each of 81 conditions we performed a structured literature search with the goal to identify 1) studies that externally validate ICD-9 codes mapped to each chronic condition against an external source of data, and 2) the accuracy of ICD-9 codes reported in the identified validation studies. The primary measure of accuracy was the positive predictive value (PPV). We also reported negative predictive value (NPV), sensitivity, specificity, and kappa statistics when available. We searched PubMed and Google Scholar for studies published before June 2019.

Results: We identified studies with validation statistics of ICD-9 codes for 51 (64%) of 81 conditions. Most of the studies (47/51 or 92%) used medical chart review as the external reference standard. Of the validated using medical chart review, the median (range) of mean PPVs was 85% (39-100%) and NPVs was 91% (41-100%). Most conditions had at least one validation study reporting PPV ≥70%.

Conclusions: To help facilitate the use of patient-centered measures of multimorbidity in administrative data, this review provides the accuracy of ICD-9 codes for chronic conditions that impact a universally valued patient-centered outcome: health-related quality of life. These findings will assist health services studies that measure chronic disease burden and risk-adjust for comorbidity and multimorbidity using patient-centered outcomes in administrative data.