DOI: 10.5061/dryad.p2ngf1w4c
title: Evaluation of equity in hospice care utilization among medicare-enrolled autistic older adults

description: Background: Better identification of autistic people and increased life
 expectancy for people with intellectual and developmental disabilities
 have given rise to an urgent need to better understand end-of-life care in
 autistic people. We compared hospice utilization of autistic older adults
 with non-autistic older adults and examined if known inequities in hospice
 utilization among the general population are exacerbated among autistic
 older adults. Methods: We analyzed hospice claims from Medicare, which
 insures Americans older than 65 years and covers hospice costs. Our sample
 included 5468 autistic older adults and 10,934 matched population
 comparison older adults who died during 2013–2021. We used multivariable
 logistic regression to compare these groups on the odds of any, early,
 intermediate, and late hospice utilization. We defined early hospice
 utilization as at least 28 days before death, intermediate as 4–27 days
 before death, and late as within 3 days of death. Interaction terms were
 used to assess whether effects were modified by beneficiary’s sex, race,
 or rurality. In a sensitivity analysis, we repeated our analyses in
 unmatched samples. Results: The autistic older adult and matched
 population comparison groups had similar odds of any hospice utilization
 (odds ratio [OR]: 1.05; 95% confidence interval [CI]: 0.98–1.13), early
 (OR: 1.01; 95% CI: 0.91–1.11), intermediate (OR: 1.03; 95% CI: 0.95–1.13),
 and late hospice (OR: 1.07; 95% CI: 0.96–1.19). In our models evaluating
 the impact of other known inequities, we did not find significant
 interactions between autism diagnostic status and sex, race, or rurality.
 Results were similar in the unmatched samples. Conclusion: Given the body
 of literature documenting health disparities in autistic people, our
 findings are heartening, suggesting that Medicare-enrolled autistic older
 adults experience similar receipt and timing of hospice as their
 non-autistic peers. Our findings highlight the potential power of health
 policies that provide zero-cost, universal benefits to Americans in
 reducing health care utilization disparities among autistic people.
description: # Evaluation of equity in hospice care utilization among medicare-enrolled
 autistic older adults Dataset DOI:
 [10.5061/dryad.p2ngf1w4c](https://doi.org/10.5061/dryad.p2ngf1w4c) ##
 Project Overview This project uses Medicare claims data (Parts A & B)
 to compare hospice care utilization in autistic vs. non-autistic older
 adults. Key components: \- Data Cleaning: Prepares raw Medicare claims
 data for analysis. \- Table Generation: Produces descriptive and outcome
 tables for matched and unmatched cohorts. \- Matched Cohort Analysis: Uses
 propensity-score matching (1 autistic : ~2 non-autistic ratio). \-
 Unmatched Cohort Analysis: Uses the full sample without matching. NOTE:
 This project uses restricted Medicare data that require CMS Data Use
 Agreement (DUA) approval. The datasets cannot be shared publicly. ## Tools
 and Dependencies \- Language: SAS v9.4 \- Required Access: Secure server
 with Medicare Parts A & B claims files \- Matching Method:
 Variable-ratio propensity score matching \- Required SAS Macros: Ensure
 "Proc Table 1 Macro.sas" is saved in the working directory
 before running table generation scripts. ## Project Structure project_root
 ├── data_cleaning │          ├── 1. Data Cleaning Part 1.sas │         
 ├── 2. Data Cleaning Part 2.sas ├── table_generation │          ├── Proc
 Table 1 Macro.sas │          ├── 3. Table 1 Matched.sas │          ├── 3.
 Table 1 Unmatched.sas ├── analysis │          ├── 4. Multivariable
 Analysis Matched.sas │          ├── 4. Multivariable Analysis
 Unmatched.sas ├── docs │          ├── Hospice Data Dictionary.docx │     
     ├── READme.txt └── results (output datasets and tables saved here) ##
 File Descriptions #### File: READme.txt **Description:** READme file as a
 txt file #### File: Hospice_Data_Dictionary.docx **Description:** Variable
 names and definitions #### File: 1._Data_Cleaning_Part_1.sas
 **Description:** Cleans and prepares raw Medicare data (step 1) #### File:
 2._Data_Cleaning_Part_2.sas **Description:** Finalizes analytic datasets
 (step 2) #### File: 3._Table_1_Matched.sas **Description:** Generates
 descriptive statistics for matched cohort #### File:
 3._Table_1_Unmatched.sas **Description:** Generates descriptive statistics
 for unmatched cohort #### File: 4._Multivariable_Analysis_Matched.sas
 **Description:** Runs models for matched cohort #### File:
 4._Multivariable_Analysis_Unmatched.sas **Description:** Runs models for
 unmatched cohort #### File: Proc_Table_1_Macro.sas **Description:** Macro
 to produce descriptive statistics ## How to Run Matched Cohort Analysis:
 /* Step 1: Data Cleaning */ Run the file "1. Data Cleanin Part
 1.sas" Run the file "2. Data Cleaning Part 2.sas" /* Step
 2: Table Generation */ Run the file "Proc Table 1 Macro.sas" Rn
 the file"3. Table 1 Matched.sas" /* Step 3: Multivariable Models
 */ Run the file "4. Multivariable Analysis Matched.sas" NOTE:
 Run each model separately to prevent over writing model estimates; the
 model estimates are saved as diff2 for each model. Unmatched Cohort
 Analysis: /* Step 1: Data Cleaning */ Run the file "1. Data Cleanin
 Part 1.sas" Run the file "2. Data Cleaning Part 2.sas" /*
 Step 2: Table Generation */ Run the file "Proc Table 1
 Macro.sas" Rn the file"3. Table 1 Unmatched.sas" /* Step 3:
 Multivariable Models */ Run the file "4. Multivariable Analysis
 Unmatched.sas" NOTE: Run each model separately to prevent over
 writing model estimates; the model estimates are saved as diff2 for each
 model. ## Outputs SAS Table 1 - 17NOV202.rtf * ``` Descriptive statistics
 for matched cohort ``` SAS Table 1 Unmatched - 14DEC202.rtf * ```
 Descriptive statistics for unmatched cohort ``` work.diff2.sas7bdat *
 Model estimates for each model ## Data Use Disclaimer Medicare data are
 protected under CMS Data Use Agreements. This repository does NOT include
 raw data. Users must obtain appropriate DUA approval to access Medicare
 claims. ## Citation If you use this project or scripts, please cite:
 Bishop, L., Nikahd, M., Wolf, B. J., Patterson, B. W., Longo, A., Radford,
 D., ... & Hand, B. N. (2024). Evaluation of Equity in Hospice Care
 Utilization Among Medicare-Enrolled Autistic Older Adults. *Autism in
 Adulthood*.