Abstract:Due to complex medical profiles, adults with neurodevelopmental disabilities (NDDs) may have a heightened risk for early development of chronic kidney disease (CKD) and accelerated CKD progression to advanced stages and kidney failure. The purpose of this study was to estimate the incidence rate of advanced CKD for adults with NDDs and compare the incidence rate to adults without NDDs. Patients and Methods: Data were used from the Optum Clinformatics ® Data Mart to conduct this retrospective cohort study. The … Show more
“…Given the unknown validity, an administrative‐based ambulatory status variable was not considered for inclusion in the WCI. Nonetheless, the severity of CP is associated with multi‐morbidity 5–10 and may not add substantial prognostic value as long as relevant comorbidities are included in the index.…”
Section: Methodsmentioning
confidence: 99%
“…Ethnic grouping was not included for statistical adjustment due to the extent of missing or unknown data. We assessed for possible confounding and selection bias, as described previously, 7 when comparing the AIC and C‐statistics between the different comorbidity index models. Briefly, we restricted the sample to individuals with complete data on ethnic grouping and performed analysis before and after adjusting for ethnic grouping.…”
Aim
To develop a new comorbidity index for adults with cerebral palsy (CP), the Whitney Comorbidity Index (WCI), which includes relevant comorbidities for this population and better predicts mortality than the Charlson Comorbidity Index (CCI) and Elixhauser Comorbidity Index (ECI).
Method
Data from the Optum Clinformatics Data Mart was used for this retrospective cohort study. Diagnosis codes were used to identify adults aged 18 years or older with CP (n=1511 females, n=1511 males; mean [SD; range] age=48y [19y 2mo; 18–89y]) and all comorbidities in the year 2014. The WCI was developed based on the comorbidities of the CCI and ECI and other relevant comorbidities associated with 2‐year mortality using Cox regression and competing risk analysis. The WCI was examined as unweighted (WCIunw) and weighted (WCIw). The model fit and discrimination (C‐statistic) of each index was assessed using Cox regression.
Results
Twenty‐seven comorbidities were included in the WCI; seven new comorbidities that were not part of the CCI or ECI were added. The WCIunw and WCIw showed a better model fit and discrimination for 1‐ and 2‐year mortality compared to the CCI and ECI. The WCIunw and WCIw were strong predictors for 1‐ and 2‐year mortality (C‐statistic [95% confidence interval] ranging from 0.81 [0.76–0.85] to 0.88 [0.82–0.94]).
Interpretation
The new WCI, designed to include clinically relevant comorbidities, provides a better model fit and discrimination of mortality for adults with CP.
What this paper adds
Common comorbidity indices exclude relevant comorbidities for adults with cerebral palsy (CP).
A new comorbidity index for adults with CP was created by harmonizing clinical theory and data‐driven methods.
The Whitney Comorbidity Index better predicted 1‐ and 2‐year mortality than other commonly used comorbidity indices.
“…Given the unknown validity, an administrative‐based ambulatory status variable was not considered for inclusion in the WCI. Nonetheless, the severity of CP is associated with multi‐morbidity 5–10 and may not add substantial prognostic value as long as relevant comorbidities are included in the index.…”
Section: Methodsmentioning
confidence: 99%
“…Ethnic grouping was not included for statistical adjustment due to the extent of missing or unknown data. We assessed for possible confounding and selection bias, as described previously, 7 when comparing the AIC and C‐statistics between the different comorbidity index models. Briefly, we restricted the sample to individuals with complete data on ethnic grouping and performed analysis before and after adjusting for ethnic grouping.…”
Aim
To develop a new comorbidity index for adults with cerebral palsy (CP), the Whitney Comorbidity Index (WCI), which includes relevant comorbidities for this population and better predicts mortality than the Charlson Comorbidity Index (CCI) and Elixhauser Comorbidity Index (ECI).
Method
Data from the Optum Clinformatics Data Mart was used for this retrospective cohort study. Diagnosis codes were used to identify adults aged 18 years or older with CP (n=1511 females, n=1511 males; mean [SD; range] age=48y [19y 2mo; 18–89y]) and all comorbidities in the year 2014. The WCI was developed based on the comorbidities of the CCI and ECI and other relevant comorbidities associated with 2‐year mortality using Cox regression and competing risk analysis. The WCI was examined as unweighted (WCIunw) and weighted (WCIw). The model fit and discrimination (C‐statistic) of each index was assessed using Cox regression.
Results
Twenty‐seven comorbidities were included in the WCI; seven new comorbidities that were not part of the CCI or ECI were added. The WCIunw and WCIw showed a better model fit and discrimination for 1‐ and 2‐year mortality compared to the CCI and ECI. The WCIunw and WCIw were strong predictors for 1‐ and 2‐year mortality (C‐statistic [95% confidence interval] ranging from 0.81 [0.76–0.85] to 0.88 [0.82–0.94]).
Interpretation
The new WCI, designed to include clinically relevant comorbidities, provides a better model fit and discrimination of mortality for adults with CP.
What this paper adds
Common comorbidity indices exclude relevant comorbidities for adults with cerebral palsy (CP).
A new comorbidity index for adults with CP was created by harmonizing clinical theory and data‐driven methods.
The Whitney Comorbidity Index better predicted 1‐ and 2‐year mortality than other commonly used comorbidity indices.
“…We therefore selected more advanced stages of CKD for the outcome to limit this bias, which is also consistent with our previous study. 13 Thus, our estimates of the incidence of advanced CKD in the cerebral palsy population may be conservative. Administrative claims data also limit the ability to examine the full set of risk factors for advanced CKD, in part due to statistical considerations given the low number of outcome events and lack of representative codes for some risk factors.…”
Section: Discussionmentioning
confidence: 99%
“…The full calendar year 2013 was used to identify eligible participants: adults 18 years or older with cerebral palsy, complete data for race, without advanced CKD, continuous enrollment in a health plan, and had 1 or more service utilization, to limit detection bias due to failure of CKD detection among persons who were not seen by a clinician ( Fig 1 ). 13 Participants were followed up from January 1, 2014, to advanced CKD, death, loss to follow-up, or end of the study period, December 31, 2017. Figure 1 Flow chart describes the sample selection process.…”
Section: Methodsmentioning
confidence: 99%
“…A recent report suggests that the incidence of advanced CKD is 72% higher for adults with versus without cerebral palsy after adjusting for cardiometabolic diseases, 13 which are well-established risk factors for CKD. 14 The findings suggest that there may be other factors in addition to cardiometabolic diseases that increase the risk for advanced CKD specific to adults with cerebral palsy.…”
Key Points
Question
What individual and residential characteristics are associated with COVID-19 outcomes for people with intellectual and developmental disabilities receiving residential services?
Findings
In this cohort study of 543 adults with intellectual and developmental disabilities receiving residential services in New York City, age, larger residential settings, Down syndrome, and chronic kidney disease were associated with COVID-19 diagnosis. Heart disease was associated with COVID-19 mortality.
Meaning
This study’s findings suggest that risk factors for COVID-19 diagnosis and mortality for people with intellectual and developmental disabilities receiving residential services are similar to (age, preexisting conditions, size of residence) and unique from (Down syndrome) those reported in the general population.
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