Evaluation of equity in hospice care utilization among medicare-enrolled autistic older adults
Data files
Sep 23, 2025 version files 186.11 KB
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1._Data_Cleaning_Part_1.sas
33.38 KB
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2._Data_Cleaning_Part_2.sas
33.76 KB
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3._Table_1_Matched.sas
3.59 KB
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3._Table_1_Unmatched.sas
3.44 KB
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4._Multivariable_Analysis_Matched.sas
21.66 KB
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4._Multivariable_Analysis_Unmatched.sas
33.59 KB
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Hospice_Data_Dictionary.docx
40.19 KB
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Proc_Table_1_Macro.sas
6.84 KB
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README.md
4.43 KB
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READme.txt
5.24 KB
Abstract
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.
Dataset DOI: 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
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Descriptive statistics for matched cohort
SAS Table 1 Unmatched - 14DEC202.rtf
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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.